I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: johnswife on July 22, 2012, 05:24:46 AM
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:Kit n Stik;
Hi guys. My husband John who is 45 has missed his last 3 dialysis sessions and says he's not going back. He has been on hemo incenter dialysis for 3 months and he hates it. He usually has to be wheelchaired out-very weak, sometimes his body hurts all over so bad that he lays in bed on pain meds for 1-2 days. He has a lot of other problems too; high blood pressure, diabetes, heart failure, neuropathy, retinopathy, copd. He's miserable 90% of the time and stays pretty sick. He has a fistula in his arm that didn't mature enough to use it, a catheter in his chest that they do use, and 3 weeks ago put catheter in belly to start home dislysis. After they put the belly one in he got very sick//was rushed to hospital the next day with 104 temp, 219/112 Bp, and only 86% oxygen. They said he has phneumonia and an infection. They kept him for a week. Now they are telling him he could have an infection in the chest catheter and maybe the belly one as well. They're wanting him to have them both taken out and start over with new ones put in. He said he's had enough and his quality of life is not getting any better; he just lays around and doesn't do much. Well he can't do too much. He can barely walk, can no longer see from retinopathy, legs in constant pain, and he is refusing to go back. I'm sure his in center social worker will be around Monday. She said she's going to have to call hospice if he doesn't start back and he says he's not going to. He says it just hurts too bad-he thinks he will last months with nothing. He had just 5% kidney function when he started. His last labs were high phosphorus, 4.9 pottasium, elevated white blood count.
I want him to go yet I also hate seeing him suffer and being miserable most of the time. I don't want to let him go yet feel selfish for wanting him to stay.
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I am so sorry. I hope that your husband can make a peaceful recovery from this set back
My prayers are with both of you
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I feel for you. You are in a horrible dilemma. I hate to hear about anyone suffering, but one also hopes to live on.
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I'm so so sorry to hear that JW. Don't know what else to say. I wish you both all the strength, and love in the world.
love Cas
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Thank you guys so much. His feet are starting to swell and he's very sleepy today. He hasn't eaten anything since noon yesterday and barely drank anything either. He sat up and talked for about 45 minutes earlier and was in good spirits just very tired. I'm hoping the social worker can talk him into starting back up and hope its not too late. His last dialysis was only 3 hours on Monday and he usually does 4.1/2 hours so it wasn't a full session.
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I just want to wrap you in arms of support and sympathy. I cannot even begin to imagine what you are going through, but I understand that it is difficult for you.
:grouphug;
I wish there were something we could do for you.
Aleta
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I am really feeling very hurt for you and John. Please be assured of my caring thoughts and prayers :grouphug;
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Hi John's Wife. I'm so sorry that you're having to deal with this. I have no words of advice though, but send you many *huggles*.
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Thank you all!! He's still about the same; getting weaker and a lot of diarrhea. He's sleeping peacefully at the moment and the kids are gone to church so I'm just taking a few minutes to rest and digest all that is going on. He's a very strong willed stubborn country boy and I'm hoping he is strong enough to pull through until we can change his mind. If we can't change his mind then I will respect his decision. I hate to think of him not being here but at the same time I know the pain his poor body has been through and don't know how much more he could possibly take.
He's been by my side for 25 years and always will be in my heart.
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This breaks my heart to hear. I dont want to have to be there ever but what choice do we have. We need to pull strength from a place we dont know we have until we have to find it. Im so sorry, and pray for healing or peace. Sending hugs as well...
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:grouphug; :grouphug; :grouphug;
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Such a difficult place to be, sending you both strength and peace.......
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I hope you both find whatever peace you can. :grouphug;
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Hi Johns wife, welcome to the site. :welcomesign;
I am so sorry that you are both going through this, I can see Johns point of view and I can see yours. Dialysis is not an easy path, you do get sick, you do get infections, to be honest it can be a pain in the ars* but then there is the other side where you get days when things are not too bad, you except what you have and get on with it. John is still young, he is probably scared of the un-known like most of us were. I am the carer for my husband and it brakes my heart to see him in pain, but like you I want to keep him here. Once they sort out the infections he will feel alot better. Tell him to hang in there, tell him you need him with you. It will get better. Is there any chance of getting a transplant.
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Just an update, johns still here first! He still has not been to dialysis and refuses to go back. To answer your question no he is not a candidate for transplant. John has alor of medical problems and they say he couldn't take the operation. He's not had dialysis for 8 days now. He is weaker today, has no taste at all and bad muscle cramps. I have talked him into seeing the dr tomorrow.
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Hi Johnswife,
THere's probably nothing we can say that has not already been said but I would like to add my small contribution in the hope it may help your husband. From personal experience I think your husband needs a mental hook to give him something to hang on to no matter how bad it gets. I do know what I;m talking about I have been there and bought a mug. Being blunt, as far as I can gather, nobody has told your husband he is terminal, that was the key for me. He can take the attitude that no matter how bad it gets that one day he will feel better than he does now. His problem is mechanical for want of a better word and a lot of the trouble can be fixed. It will help if he has a goal to aim for, a wedding to go to that sort of thing. He must believe that he can handle whatever is thrown at him, in this case giving up is not the answer. It will get better. Try to get him to do one thing, anything
today that he could not do yestertday ,tie his shoelaces-anything, just one a day and it will add up.
I hope this helps somehow and you are in my prayers. As they say don't knock it till you've tried it.
God bless.
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I feel for your husband, I really do, but I feel for you too.
If your,husband wants to die, why is he doing it the hard way? Why not go into a hospice and let them manage the symptoms? The fact that he isn't suggests that there may be a lot,of depression that is causing some sort of denial state. Does he actively say that he wants to die? Does he acknowledge that he will die with his current course of action?
I don't mean to sound mean but perhaps you are being too nice to him. Tell him what a selfish b****** he is is being. He is young and has children that love him. Tell him how you feel too because I am sure that you are frightened and angry too. Don't let him go without a fight.
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We are now on day 10. He's still refusing any medical care and still no dialysis. His condition is about the same; no better nor seems to be any worse. I say seems because I'm sure he's much worse than we know. We've all talked to him; he I believe is just tired of being sick and he's ready to go. I don't know what will happen next but he doesn't seem to be in any pain these last 2 days; just sleeping a lot.
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This is the worst part of having such diseases. I'm sure he loves u more then anything in the world. Even life itself. Noone can tell how another person feels yes we can hues and wonder but we can never know. Much like a man will never know the joys of giving birth, best example for now sorry.
I'm ready to go. If not for Karen is b gone long ago. I don't want to leave her alone. So I suffer on and for the most part am happy. But the inner me does often think if I left the world earlier rather then later she could make a new life and love again. If I hold out till later she may live alone the rest of her life. And that makes me sad.
So just a different view of the inner struggles of a patient who truly is on death watch and being kept alive artificially.
With that said i hope he realizes even though sick and dialyisis does suck. He could if willing still have many many good times to come if he decides to stick around .
prayers to u both
P&K
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He does say that exact thing. He says he needs to go so the rest of us me included can still have a happy life that doesn't revolve around doctors and being so sick. He feels like he's a burden and that he's just holding me back. I tell him that he's def not a burden and my life is with him and always will be. We've been together 25 years. And 6 children---this is my life and don't need or want a new one!
Today is day 11---anyone else hear of someone going off for this length of time?
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yes Johnswife,
I have heard up to two weeks without dialysis, but it also determines how much he still pees and what he is eating.
Im sorry your husband wants to give up. Im 29 and there are days I want to do the same thing.
Lisa
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While I'm not in the same situation as John, I can relate to his feelings about being a burdon. I truly feel that if I become a burdon to my family (to the extent of not being able to do any for myself) then I will consider taking the same road John is.
Reminds me of my dad. Dad was living with us for about a year when the Dr told him he had colon cancer. The Dr gave us all the options, the pro and cons of each and then dad ask "if I go through these procedures, what is my quality of life after?" He was told that it wouldn't be much different than the cancer was now. Dad didn't have much energy to do much, did eat very well or sleep very well at that point. So dad decided that all the procedures was not worth the extra pain and suffering and decide to let it run its course. He passed away about 2 weeks later. While it was sad to lose him, I respected his decisions.
Same with John, While it is hard to let some one go, if that is what John decide, then let it be. I'm not sure I agree with being a burdon on family as you said you been married to him 25 years - if you can change his mind on that maybe he will decide to stay around a bit longer. Grumpy
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Yes he says he's ready. He's been in the hospital up to a month at a time because he gets bad infections. He's actually had 4 surgeries just over what would start out as a bump. He had one that got so bad they removed enough of the back of his neck/head that you could literally put your hand inside his head. He's been through more than I could ever endure. We love him very much and while we def don't want him to go we also have seen him go through more than anyone should.
Now for how he's doing. He feels very ill this afternoon, throwing up and said just feels crappy and very tired, sleeping a lot but no pain so that is good. In 2 more days it will have been 2 weeks since last dialysis. I tell him at anytime he can change his mind and I will rush him to nearest hospital but he really seems at peace with everything so I'm just going to be here to support him no matter what he decides.
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You are a good wife, Lisa.
I'm a similar age and have similar health issues as your husband, although mine are more manageable and I'm doing relatively well. If I were to make the decision to stop dialysis I would want my wife to support me as you are him.
I will say that once I got the bugs worked out of my dialysis my health improved dramatically.The year leading up to dialysis I was in the hospital three times for over a week at a time and I was in the Emergency Room at least once a month. I was in a bad way. I'm glad to report that I have had no hospital stays in the over a year that I've been on dialysis.
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There isn't much I can say here, but felt compelled to respond. I'm so sorry for what you are all going through. There isn't anything easy about this disease, certainly not when it comes to making decisions about the quality of life. Wishing for strength, peace, and comfort for all of you through this time.
Jen
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:cuddle; :cuddle; :cuddle; those are for you.
:grouphug; :grouphug; :grouphug; those are for you, him and your family.
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Just an update guys. Johns still here and still the same. Just weak and sleeping. It's I think day 12 or 13 I lost count. He's a tough guy is all I know!!!
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:cuddle; Hi johnswife,
Do you have hospice helping you now?
Sending you {{HUGS}}
:grouphug;
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No hospice hasn't been notified. He says he's not in pain so he doesn't think he needs it.
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But maybe you would? and so that might help him too?
lots of love, and strength Cas
:grouphug;
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:grouphug; :grouphug; :grouphug; :grouphug;
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Keeping you in our thoughts and prayers. And I think the hospice idea is a good one, it will help you through this too. Just my :twocents;
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:grouphug; Bless these days for you.. Strength and peace... :grouphug;
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Hospice isn't just for pain. It is for mental and physical help for the patient AND the family. Please give them a call. Grumpy
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Just checking on you Johnswife :(
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Hospice helps keep the patient clean, calm and comfortable, as well as giving support to the family.
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Sending :grouphug; :grouphug; and keeping your family in my prayers
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Please encourage your husband to hang in there. I won't say dialysis gets easier over time, but having been on for almost seven years, I can say that the side effects will lessen as you learn more about what works for you as an individual. The treatments affect everybody differently, but once you get into a routine, it is less stressful on the body.
Please keep this community advised of your progress, you'll find a lot of caring and support here.
Bless.
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Lisa, I soooooo respect you for standing by HIS choice to stop. I pray for comfort and strength for you :cuddle; i do hope you have hospice come and help they r amazing.
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Sending my thoughts and prayers to you :grouphug; xxx
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I'm so sorry that you all are going through this. You are good to try to change his mind, and good to support him when he doesn't change his mind, but either way, it's a very hard thing to got through. God bless you, sweetheart, we are all thinking of you!
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Sorry I haven't posted in a few days. John is now on day 16 no dialysis. Had blood work done yesterday.
Gfr 3
Bun 4.8
Blood urea nitrogen 79
Potassium 6.4
They set him up for surgery today to remove his pd catheter and his chest catheter. He's def getting weaker by the day but still hanging on.
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I admire the strength you show through all of this. I see your heart is breaking, and also that you're willing to allow it to be broken if this is what your husband feels is right for him.
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Thank you for the update.. Have you called hospice? My experience wasn't so great, but the nurse there round the clock was a comfort, and took care of necessary notifications, etc. Also, I wasn't alone with my dad that way, and she checked his vitals and told me what was going on, which was a comfort of sorts. His last nurse was actually my favorite, and like I said, I was so glad not to be alone, not to have to know what to do....and I still cleaned him up, changed his clothes, and dressed his wounds, I just had help.
I'm sorry to be morbid, it's just easier to have them there, even the company that we hired, which I wouldn't recommend (Vitas), had good people. Even if he changed his mind, I think they might still help if he is extremely ill like this. You can go in and out of hospice.
I'm so sorry. :'(
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I hope you continue to know that you are not àlone as you go through this. Your entire IHD family around the globe is with you. Thank you for updating us. My caring thoughts and prayers are with you. :grouphug;
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This is absolutely heartbreaking . my Mum chose to end her treatment ( not dialysis , she had cancer )two years ago and Iwent through this . It was the hardest thing I have ever done and I still have not recovered . May you find the courage to cope . God bless you and John . I think of you every day and hope it is over soon .
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:grouphug;
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WhY are they putting him through surgery? That seems cruel and unnecessary. :flower;
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WhY are they putting him through surgery? That seems cruel and unnecessary. :flower;
My thoughts exactly!
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Well they didn't do the surgery. We went and when we were waiting in preop they had his dr come in and he told him he was admitting him, well he was furious. They were wheeling him up to hemo to have dialysis that he didn't want through his chest catheter that is infected. They took a culture last week and it does have an infection. They just would not listen or hear him when he was telling them I am no longer interested in dialysis. Well needless to say he had to argue with social workers, nurses, doctors all day!! They finally let him go AMA and told him he was selfish and not thinking clearly. I told then he's been very Ill for a long time and they don't know him or what he's went through and that he's thought long and hard about everything. They were so mad that he didn't listen to them that they never even took out his iv!! He had to take it out himself in the van on our way home. So he's now resting, infected catheter still in place as well as pd catheter. They couldn't believe he's not had dislysis 17 days and still walking.
I told them my husband is as strong Willed and stubborn as they come and he's going on his terms. They think he's only got a few days at most. We will see.
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How horrible you both went through such a day ! Maybe if someone had shown him a little compassion and understanding , they could have talked him round . He obviously is at a point that he is not thinking clearly . Laurie once walked out of our local hospital after a nurse stood toe to toe arguing with him about pain meds he has been taking for over 30 years . She told him he could not leave with the iv in , he said watch me ! She actually sent the police to our house to bring him back as he still had an iv in . He had in the meantime removed it himself . I know what you mean about strong willed and stubborn . I just wish this was not happening and I continue to send you both my best wishes . I hope you have lots of support .
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Hi John's wife...I understand how he feels, it is not easy to deal with being sick all the time. You do feel like you are a burden on everyone. My grandma lasted for over 3 weeks, and she had just had enough. She had no quality of life, and was not a good sick person. The family just supported her as best they could, and respected her wishes, after all, it was HER life. We just kept reminding her of all the good times we had had with her over the years, and even showed her some pictures of the best times throughout her life. Technology has progressed so much in the last 20 years, and we are able to sustain life so much further than when she passed, but the desire to live is a big factor on how well a person can tolerate the treatment. Some people just feel so lousy that they can't imagine getting any worse. Some people just keep up a brave face, and just carry on. The Lord will take him when the time is right, and really all you can do is love him and offer words of comfort.....tell him all the things he needs to know....be there . God Bless you
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:grouphug; I wish you strength and peace, and Gods arms around you... blessings
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:grouphug; What a difficult time, he should be listened to. It's his life.
Big hugs for you johnswife! :cuddle; :cuddle; :cuddle;
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So many hugs coming your way.
:grouphug; :grouphug; :grouphug;
I'm sorry that the medical staff put John through all that. Why won't they just listen to the patient? :banghead;
Aleta
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johnswife, I'm sorry you had to deal with self-important jerks who felt they knew better than you and John. You two are going through such a difficult time already and certainly didn't need that kind of disrespectful idiocy on top of everything else. :Kit n Stik;
I wish you weren't in this position to begin with. I really admire your commitment to John's wishes and I wish there were something I could do to ease your pain. Just know that there are many more people than you realize sending strength and healing thoughts your way. :grouphug;
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You are in my prayers.
:grouphug;
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You were right and they were wrong, plain and simple. At the moment, you need to put all your energy in to supporting your family. When you are in a position to do so, I would love you to do something to redressed the wrong that was done to you and John today. Complain for sure, butmore importantly, Ithink that you should go to the hospital (I hope it's a teaching hospital, if so, so much the better) or go to this one plus the nearest teaching hospital,not for retribution (bu for that as well if needs be) but to arrange a teaching seminar, where you can tell John's story and his treatment today and use it as a way to raise discussion why this was wrong in so many ways. Hopefully, some new docs. Will walk away having learnt avaluable lesson, and with a bit of luck, some older ones will too. The doctors responsible for this treatment should simply hang their head in shame.
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when u said they were gonna do surgery, i wondered why, i mean he has made his decision, he hass accepted what it means and you guys are supporting his wishes, to try to make him dialize i rediculous. what a crazy rediculous day
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Lisa, I'm keeping you and your family in my thoughts and prayers. i know this is very hard for all of you, and I admire your ability to support your husband and take care of your children through all the stress and pain. I'm glad John is not in any pain.
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Hello to everyone. Just an update John is still here and actually still feeling ok. He's tired ect but it's been almost 3 weeks which the doctors didn't think could be done. Here's wishing for yet another day!
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:cuddle;
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:grouphug; Sending good thoughts to you both.
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Hugz hang in there.
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:cuddle;
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Hello to everyone. Just an update John is still here and actually still feeling ok. He's tired ect but it's been almost 3 weeks which the doctors didn't think could be done. Here's wishing for yet another day!
:grouphug; :grouphug; :grouphug;
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:cuddle; Thanks for contact and bless ya both,
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Lisa, Thank you for keeping in touch. I'm glad to hear that John is still feeling O.K. Praying for physical comfort for John, spiritual comfort and peace of mind for all of you and of course "yet another day". :grouphug;
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Hugs! :grouphug;
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May God Bless you as you go through this difficult time.......
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Sounds to me like your husband has been dealt a bad hand. I was only on dialysis for about 6 months. It was killing me. I did work out occasionally with weights. One day I went to dialysis and someone was being prepped for a transplant. Went home and told my brother that I thought I was next. Just about got to sleep and my brother was pounding on my door. When I angrily asked what he wanted, he told me my number was up. Seems the guy that was to get the transplant chickened out. The kidney was mine if I wanted it. It was a cadaver kidney and I am pretty certain they said it had a 50/50 chance of taking. That was 32 years ago. Sometimes you just don't know and that is why it is important that you don't give up.
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Sounds to me like your husband has been dealt a bad hand. I was only on dialysis for about 6 months. It was killing me. I did work out occasionally with weights. One day I went to dialysis and someone was being prepped for a transplant. Went home and told my brother that I thought I was next. Just about got to sleep and my brother was pounding on my door. When I angrily asked what he wanted, he told me my number was up. Seems the guy that was to get the transplant chickened out. The kidney was mine if I wanted it. It was a cadaver kidney and I am pretty certain they said it had a 50/50 chance of taking. That was 32 years ago. Sometimes you just don't know and that is why it is important that you don't give up.
Awesome story!
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Johns sure hanging on for something; I know that. He shouldn't be here-it's been 23 days with no dialysis and he's still fighting. I think he's staying around to tell the doctors kiss my a$$. They told him with his function he
Wouldn't make it past 1-2 weeks!!
Something very ironic though-he's tried to get disability and was turned down well he got approved now starting september 1st!! What's the odds. It's like a cruel joke.
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Or......Maybe a blessing instead of a cruel joke. Wishing you both well, it is hard. I m struggling with D. hopefully things will get better soon.
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What about his infections? Is he on antibiotics? The chest catheter sounds painful. It also sounds like they agreed to remove his catheters as a ruse, to get him in the hospital and bully him back onto dialysis. Of course, it must be frustrating to think you can help a sick person and they refuse your help. They are trained to keep people alive, seemingly at any cost, and to a hammer, everything is a nail...oh, hugs, I am glad he's not in pain!
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No he's not on any antibiotics. He's not taking anything except Xanax to sleep.
He feels good today just weak.
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What can I say? I was in the same position as your husband minus all of the other problems, just had cancer and renal failure. After eight months I quit dialysis, had an immature fistula, and just had had enough. There was no changing my mind.
But my timing was very good. Immediately after quitting I tested and had a 20% kidney function. It has improved since then. What's the point? His mind set. I know right where he is at. I have felt the subborness, the rancor towards the Doctors and nurses, the "I don't give a damn" feeling because I'd rather be gone than be punished by the medical community (treatment). And, yes, when the toxins get heavy you do go out of your head.
He may not be thinking correctly. At some point you may have to think for him.
Sorry this is happening to someone, anyone! God bless you.
gerald
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Today is day 24 or 25/--I'm losing count. He's still going and not feeling any worse. His labs are horrible so I don't know how to explain it. He actually says he doesn't feel too bad and he's still eating/peeing, ect. He's thinking he may go months like this which I know is highly unlikely with 3% kidney function but with my husband anything is possible. The doctors sure didn't think he'd last a week or 2 at most.
I'm just glad he's here. It's hard that the first thing I look for when I open my eyes is him breathing but that's my reality at the moment.
Thank you to all of you on here; you have helped me a great deal just to talk to someone.
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You are in my prayers. Tough but hang in there.
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i cant imagine what either of you are going through. I know thats a very hard decision to make.
I quit for a little over 2 weeks and felt fine, and i ate and drank what i want.... at the last day i did have shortness of breath and all that jazz, ended up going to the hospital then. So i do think that its very possible, especially if someone watches what they are eating and drinking, and they still pee, then it could potentially be a rather long time.
i hope things go as smoothly as possible for everyone :cuddle;
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I can't imagine how strong you are, John's Wife, to endure this. Your love for him is so beautiful. My husband was in the hospital a couple of weeks ago, he coded and they had him on a respirator. The first day he was not entirely sedated he wrote me a note that said "kill me." That night he asked one of the nurses to remove the respirator and let him die. He has been through hell with his health, like your husband, and I knew he was just about fed up with the struggle. But they never gave me any reason to think he wouldn't recover and come home. If they had said he wasn't going to recover to any decent quality of life, I wouldn't have fought him. I know he wouldn't want to have been kept alive artificially. But he got better, is now home and doing a little better each day. We do home hemo and he's doing all right. He had to have two stents put in and they broke his sternum but he is able to get out and do things, though he tires easily. I think I did the right thing - this time. I dread a situation like what you are living through right now, and I hope if it happens I will be strong enough to support him as you are doing for John. He is so lucky to have a wife like you.
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johnswife, You are being so brave for your husband. I know we are all thinking about you both.
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Like everyone else on this site, I'm really in awe of how strong you are to go through this. Not sure you even necessarily see that right now, but your love is such an incredible gift for him. God be with you both. :grouphug;
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:grouphug; :grouphug; :grouphug;
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:grouphug; :grouphug; :grouphug;
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Just stopping by to let you know that I'm thinking about you, and still praying for peace and comfort for your family. :cuddle;
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:cuddle; :grouphug; my thoughts and prayers go out to you. i understand what your going through. My friend gave up and i sat with her for 3 days till she was gone. Hospice helpes alot. I do miss my friend but i also understand that the pain can be very bad. I just wish both of you do find peace. xoxo
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You and your family are in my thoughts and prayers.
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I feel for you, I really do. given that it has been so much time without dialysis, it suggests to me that maybe,he was started on dialysis too soon. it sounds like he could go on like this for some time, although the fact that he is sleeping a lot does suggest that he is borderline for dialysis as I am sure that his eGFR testifies to this fact. I imagine that the strain must be especially trying for,you. how are the children dealing with this?
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just sending support and :grouphug;
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I worry every time I come to this thread....
I have been thinking of you. :cuddle;
Aleta
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Praying & thinking of you and your family! It has to be so hard. Please, do not rule out Hospice. They can really help out in times like this. Please tell John we are thinking of him!
lmunchkin
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Still thinking about you and your family. Praying and sending hugs :grouphug;
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Sending many thoughts & prayers your way as well as :grouphug; :grouphug;
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Prayers for you, your husband, and your family. God bless you. :flower;
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Has any one heard from Johnswife about is condition to date? Grumpy
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Can you guys believe---30 days (I think) and no dislysis. To respond to one of the earlier questions. My husband is a diabetic and they say he should have started at 10% function but he waitied until 7 % and he's now at 3%. I don't know how he's going with that little of function left. He does still pee 1-2 a day so I guess it's filtering just enough. He's gained 5 lbs this week though so the fluids are starting to build up. He had a good day yesterday and was outside working on his truck. But he came in so weak he could barely stand. He's just a fighter is all I know!!! He's having labs done again today to see what his no.s are so I will let you guys know if they are miraculously better or worse. I'm betting the 5 lbs in one week is def not a good of what they will show.
On another note-I had a pretty intense headache for a week plus just feel like crap so went to dr yesterday and my white blood cells were 2,000 which they said was really low so I have to go back and have them repeated today. From what dr said that low of WBC can mean bone disease, leukemia, and a whole bunch of other things. Some were obvious like bronchitis, phneumonia-ect which of course I know I don't have. So hoping for the best with both labs today!!!!
Hugs everyone!!!! :grouphug;
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Damn girl, you guys just can't get a break. John's multiple problems and now yours. Just wondering, do you think your condition is a result of the stress of caring for John? Grumpy
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Oh and just had to tell ya the dislysis center called here by mistake asking for another patient!! When I told them who they called they just said he's still alive without any treatment. Very surprised people. He's also started getting his taste back---very odd. He hasn't been able to taste food for about 5-6 weeks and now starting to taste some stuff. No telling with him. I tell him (jokingly) he's a freak of nature. The doctors can read their books all they want and learn all they want and then they meet JOHN!! He defies everything they tell us and I love
Him for being such a strong stubborn a$$ that he is. They said he was septic 3 weeks ago and would go within days without antibiotics through iv. He's not taken anything of any kind.
I know he's slowly dyeing and I'm not saying that's not happening but he's going in his own time
And in his own way which i think is just his way of having some control over his life and care. I'm just proud of how strong he is and if he decided tomorrow to go back on hemo I'd be right behind him; not that I think that will ever happen but maybe he's sticking around for a higher reason and maybe he's got a whole lot
Left and someone bigger than us is seeing that he gets everything done.
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Damn girl, you guys just can't get a break. John's multiple problems and now yours. Just wondering, do you think your condition is a result of the stress of caring for John? Grumpy
I don't know---they said low WBC is not a condition of stress. I've had headaches for years!!! I'm sure it will be something small--they are worried a tumor because of severe headaches and the body aches, ect. Maybe today's lab numbers will be back to normal. Fingers crossed!! We can only have 1 sick person at a time and it can't be me. I don't have time right now to get sick!!!
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May be true, but I've heard stress can do things to our bodies that we don't understand. While maybe not a direct cause, it sure can contribute to any illness, and such. Anyway, wishing you the best on your labs. I like your thought that you can't be sick - don't have the time. Think positive. Love Grumpy
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Poor thing, I hope you're feeling well soon and that it is nothing serious. It's awful to look for breathing first thing in the morning, but I would be doing the same. I can't believe he worked on his truck! It sort of reminds me of Goofynina's story. She didn't believe that her condition was that bad and was in bed all day, cold and had a lot of water weight, and her mother threatened to call an ambulance. Her function was very, very low by then, too.. They started her on emergency dialysis and couldn't believe she was alive, I think. Doctors often can't believe it when we're still conscious or alive, within we just intervene a lot of times and don't really remember what courses illnesses tale anymore.
:grouphug;
I, too, hold me breath before reading this thera. I came online to see how you all were doing. Take care of yourself, I'm sorry that you're suffering.
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Just a virus on my part do feel like crap but will be fine. John was super sleepy yesterday and had a lot of pain last night. The doctor gave him some pretty good pain meds though so he slept fine after taking them. He's def starting to swell. Belly is very swollen as well as legs, feet. For the most part he still feels ok though. Last night he said I really don't want to die but I can't stand the pain of living either. What a statement I thought. It's August 17th and I think it's been 31 days with no dialysis.
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I feel bad for all of you. I can see his point of view. But I am sure it's very hard on you too. I'm glad he has the pain meds for comfort. All you can do now is love him.
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He could go into dialysis and have them just do a PUFF. That means they just pull fluid no toxins. That would at least take some of that swelling down so he is not so miserable. That is what I would want. Let the toxins kill me but don't let me drown.
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I have been thinking about you and wondering how you have both been doing. I don't know anywhere near as much as the rest of the people on this site, but what Rerun says sounds like it would help, if they can remove some of the fluids that are making him feel so miserable. This must be so hard for you; I am continuing to send healing thoughts in your direction. :grouphug;
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Johnswife, your comme ts about saying that he doesn't want to die/doesn't want to live sounds awfully like a bargaining statement nada denial which happens as a step in the grieving process. do you think his refusal to do Ida
hiss is a type of denial and his attitude could be depression, which is treatable. how does he feel about leaving his children behind? i am not trying to judge him because I know that he has a lot of other health issues but it does concern me that he may not be thinking straight, and having had depression, I know how hopeless for the future that can make you feel. would there be any chance for him to do home HD? this is so different from in unit, as day is from night, or would PD be an option? I would live to hear that he has had good dialysis so that he can see the difference.
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Okay….I was not going to comment on this but to penny back off of Amanda100’s post. I must agree with Amanda100, I think he is in a state of depression. I can truly understand because I was there one time myself. I’ve been in-center for 11 years and I was tired. I was ready to give up because I couldn’t take it anymore. Not so much of the treatment but the way patients were treated in-center. The same routine over and over and over and over and over again, now don’t get me wrong some patients do well and very satisfied, I was ready to end it all.
As I was searching through IHD, I do almost everyday but don’t really respond, the thought of Nxstage came to my mind. I told myself I will try this and see what happens. I’m so glad I made that choice. It was the best choice I made in years. Now my whole attitude and physical fitness have changed. I no longer feel like giving up. I am a lot happier and live my life a whole lot better. I feel like I’m back in the game again. Now, I’m not 100% there but I’m 95% and that good enough for me.
That said; please try to talk to your husband about other options Now, if you tried all options and your husband still decides not to give in, at least you know you’ve tried. I think about him a lot and wish I was close to you so I can talk to him. I will continue to keep your husband, you and your family in my prayers. :pray;
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johnswife, thinking and praying for you both.
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:grouphug; :grouphug; :grouphug;
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I don't really have a lot to add here. do have a number of thoughts on the situation - some of them conflicting - so I think I will just add my general support. It must be hard, in a way, to emotionally come to terms with a decision and an expected outcome, and then not have it happen as you expect - I am not sure if that is a blessing or not because there are so many sides to that one (for example, the joy that he continues to live mostly OK as opposed to the pain he is in as opposed to your own coming to terms with the choice and so on). I simply can't imagine.
You mentioned his swelling from fluid - is he able to move a lot still, walk around etc, or is it all too hard/painful now?
You are indeed very brave - both of you I think.
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Well day 35 and still going. To answer a few questions. He can walk and get around just a little unsteady but he already was like that. He's still eating although not much because he can't taste anything he eats and he either throws in back up or has diarrhea within 15-30 minutes. His body def gets rid of anything that goes inane doesn't waste time. About being depressed; I'm sure he is but here us his thought. He hates dialysis and he refuses to go back on hemo. It was simply too painful for him; his bones ect would hurt something awful and he was sent to hospital on more than one occasion because of Bp while on dialysis. He at first got the fistula and it's 7 months old, not mature and too small so can't use it without having it redone ( he doesn't want to do this) he was incenter hemo for 3 months in constant pain but with the hopes of doubt pd home dislysis. He finally gets his pd catheter put in 2 months ago and it wouldn't drain correctly not to mention it was infected within a week; all this time he's still suffering through the hemo and hating every day when he hears that a culture shows his chest catheter is septic and needs to come out and a new one put in. It was at this moment he said no I'm done---he said however long his body lets him live is what he's got but he refuses to go back on hemo and tired of trying; against anymore surgeries ect.
So while he wants to live he's going to do it as long as he can on his terms and he said for him life on hemo is no longer an option nor is anymore surgeries. He's had trouble with about every surgery with infections and so on.
If any of you get a chance and get on YouTube look up diabetic infection head--something like that. That's just a but of what he's been through with infections. It's very graphic and shows the process of a simple infection for us and what it does to John.
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YouTube video is done by kkat123
And title is huge infection graphic.
If you want to see it and have trouble you can type in Kelly at dentist on laughing gas. That's my then 9 yr old daughter--just click other videos and you will see johns infections and just some of what he went through.
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I sincerely understand and wish you and your family well. No one knows what another person is going through unless that person has experience it his or herself. Sorry things did not work as he planned. I truly know that feeling as I, too, has a lot of plans after receiving my transplant when I was called; unfortunately, I didn't receive the transplant and my plans went down the drian. Everyone has their own way of dealling with things. I will still keep John in my prays.
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:grouphug; :grouphug; :grouphug;
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oh johnswife, i just went and watched your adorable "then" 9 year old daughter on laughing gass. Precious little heart.. And then................ oh how awful the infection of your dear John. Bless his and all your hearts, how very awful!! I hope you are all in peace with whats going on, and pray for comfort in it all. :grouphug;
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I watched the video, and poor John really hasbeen through so much with all those infections, and it doesn't sound and look as if it was dealt with very well. that doctor who sliced into his neck with no pain meds. should have a taste of her own medicine, that is inhumane in my view. with all that going on, I can understand why he feels like he does. I think that it is a shame the way that the medical staff behaved when he went to have the catheter out. my thoughts are with you both. :flower; :grouphug;
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Hello everyone. I don't even know what day it is I think 37. Last night was the worst ever; John threw up all day yesterday-he couldn't hold down anything. He was hurting real bad last night all over! His head he said felt like it was exploding , his guts he said were hurting something awful, he was itching from head to toe, couldn't sleep, anxiety was driving him 1/2 crazy. Needless to say it was a horrible long night with no sleep. His feet and lower legs are getting swollen and tight. He's sleeping like a baby now after 3 Xanax through the night. He said last night he just wishes it would finally end. He said he's in purgatory---not living but can't die and he's in misery.
Here's hoping for a better day and night!! Well I'm gonna try to catch a little sleep while he's out. These 2-3 hours of sleep a night and really rough and it's hard to be understanding and kind when you are so tired yourself. After rubbing legs for 3 hours last night I finally got him to sleep and went to bed for 45 minutes!!!! Yep he woke up again needing back scratched for another 2 hrs. I know he's in misery so I try to understand but man it's hard!! I think we need to call hospice at this point but he thinks that's an intrusion on his last days and just wants family around. Another few nights like these and he may want someone else --- I get awfully grumpy on no sleep day after day. But I want to be there for him in everyday and def don't want him to ever feel like a burden so we will just deal with all this as it comes. One day at a time and one breath at a time.
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:grouphug; and I'm so sorry that you're all going through this.
However, please excuse my bluntness but it feels very unfair that John is rejecting any kind of professional help at this stage of things. You sound exhausted and should not be expected to rub and scratch for hours. Just not fair and I say that with full personal knowledge of ESRD itchiness, cramping etc. I understand his wish for it all to be over but it doesn't need to be quite this difficult.
:grouphug;
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I agree with you about having Hospice come in at this point. It sounds to me that at least some of the things he is suffering through right now would be able to be alleviated (anxiety, pain for instance). Hospice nurses are trained to deal with end-of-life care, as well as being (hopefully) sensitive to family needs as well. I was a Hospice volunteer for a number of years and can vouch for the need of caregivers (that means you, in this case) to not forget to take care of themselves also and especially at this time....the point being here, that you really don't know exactly how long this will go on. It may be true that it will only be a few days - but it's already been over a month when the doctors were not giving him a fraction of that time. It could be awhile yet.
You can still be there for him; just don't exhaust yourself so much that that becomes an impossibility. My :twocents; (especially after seeing my sister go through something similar).
Anyway, you have many friends on this board and elsewhere who want you to know that they care and are supporting you and John whatever happens.
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Please, please have Hospice help John (and You!) through this difficult time.
:grouphug; :grouphug; :grouphug;
I've been thinking of you....
Aleta
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I'm so sorry you're having to go through all of this, both of you. I wish your husband would let hospice come in. Even just to give it a shot. I messaged my sister-in-law, who manages a hospice organization, about resources that might help shed some light on how hospice can assist you. Here's one link: http://www.nhpco.org/i4a/pages/index.cfm?pageid=3254&openpage=3254
She's supposed to get me some more information. I'll send that along when I get it.
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yes, hospice care. it is not just about John and you have children to think of too.
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Hospice is for you, not him is one point to make so you can get some needed rest. At this rate exhaustion can be doing you harm in the long run. You need to get out for a bit to while someone else canwatch over. It's not like they will be there 24 hrs a day unless specified.
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all this suffereing on both of your parts is not necessary. It's hard enough on your heart(emotionally) but when the staying up takes over, it's not good. Please, and i believe they dont even have to announce themselves as hospice. At least they dont here in cali. When i needed for my mom (though she passed before i actually got them) i didnt want my mom to know and fear that she was this close to the end. They said they could come in as visiting (i thinik nurses??, or just companions) and do their magnificent work like that. Please consider... I dont believe tonight will be anybetter w/o them :( Im so sorry... Sending love and prayers.. :cuddle;
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I'm sending you some love and prayers. God bless this time and make it easier on your family.. :grouphug;
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:grouphug; :grouphug; :grouphug;
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:grouphug; :grouphug; :grouphug;
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:cuddle; Thinking of you.
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:grouphug; hi Johnswife. I just officially joined but have been coming here reading for a while and have kept up with this thread. You have both been in myprayers and thoughts. I understand where you are completely. My younger brother passed in May after a long painful battle with MS. He chose not to have any lifesaving measures if his life was in danger so when hegot an infection that went septic I chose to honor his wishes and he spent his last days on hospice. I didn't want to lose him but that was what he wanted. There are no words to ease you but I do want you to know that I will keep thinking of youboth and praying for you. Hoping God gives you strength to do what you must. Hugs to you and thinking of you.....
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Hi all! Johns still with us over 40 days---doctors don't know what to think. He's very sick though. He cannot eat without having immediate and I mean within minutes diahrea and if he doesn't eat he throws up horribly. So it sucks for him no matter what he does!! I can't even imagine. Last night he had sever back pain to the point he was about to pass out. I've finally gotten him to agree to hospice so going to call his doctor tomm. He's been asleep most of today but resting comfortable. I'm just resting and bracing for tonight;( he's much worse at night.
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Glad to hear he agreed to hospice. I hope that helps you both.
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I am glad you are calling hospice. They helped me so much with my brother. They were as worried about me as him and all were lovely caring people. Still thinking of you both and praying for you... :cuddle;
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My prayers are with you. My mother works hospice and they can really help. I know she mentioned that it is not pleasant when you are going with renal failure but the nurses can help with meds to make him more comfortable.
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hospice realy helped when my friend passed i held her hand for 3 days as she passed. They always made sure i was ok and brought me things to drink and kept me in better spirits as i watch my good friend pass. The messed up part is I know someday it will be my turn and i hope I have a friend like me in my last days.
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So glad he has agreed to have Hospice. They can help him be more comfortable and the volunteers can move mountains. Please take this time to get a little rest. So sorry for all you are going thru. :pray; :pray;
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My heart goes out to you both. He will be far better off in a hospice. You are both in my prayers.
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So glad he agreed to hospice, johnswife; I think it will really provide some needed relief. Just want you to know I'm sending all kinds of loving thoughts your way, and prayers for your continued strength. :cuddle;
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Thinking of you all, and glad John has agreed to hospice.
love Cas
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I am so glad that he has agreed to hospice. I believe that it will be better for both of you. Amanda
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:grouphug; :grouphug; :grouphug;
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I, too, am glad that John has agreed to let Hospice in to help, as much for your sake as his.
You have been on my thoughts....
:grouphug;
Aleta
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:cuddle; Hospice is a good choice. They'll be able to give you a break from caregiving and they know how to handle the kinds of difficulties that can come up at a time like now. You are both in my prayers.
:flower;
Anne
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:cuddle; Just thinking of you this evening, saying a little prayer that things are going ok.
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Remembering you and John. My caring thoughts and prayers are still with you all the way.
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Well my John is still here and showing no signs of slowing down. He hasn't thrown up for 2 days and actually feeling pretty good. I def can't explain it nor can the doctors. He hasn't even needed pain meds for 2 days. He's a strong man for sure.
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Good news! Enjoy this reprieve to the fullest. My caring thoughts and prayers are still with you all :grouphug;
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Wow. That's amazing.
:yahoo;
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wow for sure!! It's kind of hard to know what to even say at this point but seems you have many prayers commen your way, and mine as well. As long as all is somewhat peaceful these days, it's all blessed time. I truly wish that his kidneys (and all other issues) would just have healed themseves and your on the road to a whole different story that you anticipated. All the best,,, bless ya both
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I'm glad that John has rallied. Did you get hospice in to help?
Sending you...... :grouphug; :grouphug; :grouphug;
Aleta
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:clap;
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:bandance;
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CHERISH this time with him! Its truly a gift!
So glad he has you there with him.
God Bless,
lmunchkin
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Just checking in to see how you are doing. I'm glad John is getting a break from the vomiting and pain and I hope you can get some much needed rest. You're right, he is a strong man, and you are a strong woman to be able to stand by him through this difficult time. :grouphug;
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So happy for you. Even if this is only temporary, at least it is a little more time with him. Enjoy it. God Bless you both.
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Just checking in. So glad he has a break from the vomiting and stuff. A much needed relief for you both. You continue to be in my thoughts and prayers. :grouphug;
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Hi guys. Well the vomiting returned yesterday and to make matters worse; he feel 2 days ago really hard because of being weak. He hit his back on a metal tire hub so he's had a really rough couple of days. But he's still here; def lost about another 5 lbs. but no dialysis for well over 5-6 weeks.
Will keep ya updated
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Thank you for the update. I think everyone here is checking and hoping that things are going as easy as they can for you both.
Take care of each other and yourself. I hope you're getting some rest when you can.
Bev
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Just sending hugs.....
:grouphug; :grouphug; :grouphug; :grouphug;
Aleta
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*huggles* for all of you ...
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:grouphug; :grouphug; :grouphug;
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:grouphug; Hoping you both are doing ok. Thinking of you...
EDITED: Fixed tag error- kitkatz, Moderator
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:grouphug; :grouphug; :grouphug;
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Starting on approx. July 16 - looks like it's been 7 1/2 weeks.
Sorry to hear he fell, poor guy.
I hope you and your family have help.
Sending lots of {{{HUGS}}} your way.
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:grouphug; :pray;
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:pray; :pray; :pray; for comfort for all.... :cuddle; :cuddle;
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Your husband is an amazing man. God Bless you both.
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hi Johnswife, watching your journey with your husband. I can not help but think he is luck to have you being there for him. I am sure it is not a easy road to take for both of you.
Me as a kidney failure patient, I think I may one day will face the same choice he made when dialysis is too much to take. Without the support like you provide, I do not know if I would be able to really make the right decision for me.
Well... praying less suffering for him, strength and comfort for you.
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:cuddle; You're both in my thoughts and prayers. :grouphug;
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Thinking of you all.
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HI JOHNSWIFE!
I can only imagine what you and he; and your entire family are going through. I can't say any more, nor can I say it enough, that anyone hasn't already said, but our thoughts and prayers are with you and your husband.
How lucky he is, to have someone like you stainding by his side, day after day, after day. I too, am lucky, as my girlfriend of 12 years, stands next to me, too, as I struggle with this awful disease. She is my inspiration and my strength; as I am sure that you are to your husband.
As I can not say that I agree with his decision to stop Dialysis, I know where he is coming from and can CLEARLY see his point of view. I do not think that I have the courage that he does, to make that decision. I would not wish Dialysis on my worst enemy. I have gone through so many physical and emotional changes the past few years, it just wears me out. Not to mention the stress and strain that it has put on my family.
God Bless you and your husband. We are ALL thinking of him; and YOU! Just remember, you are never alone, we are all here for you and John.
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Is he in any pain???
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:grouphug; :grouphug; :grouphug;
:-*
good luck
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Every day I come here to see if there is any news. Silence makes me worried.
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me too :waiting;
Every day I come here to see if there is any news. Silence makes me worried.
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We havent heard from you since the 6th. How is John and you doing?
Lisa
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Definitely getting concerned here, especially since both of you were not feeling that great. Update soon, please!
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OH MY! It's been a week and a half since last reply. Anybody heard from JOHNSWIFE?????
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I can't help but be worried.
:grouphug;
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Me too. This does not look any too good.
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You both are in our prayers, Johnswife. Let us know! We are here for you!
lmunchkin
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Been thinking of your family, your in my thoughts & prayers :grouphug;
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Hello dialysis family. I'm happy to say John is still with us at about 9 weeks. Doctors cannot believe it!! He's weak, has fallen a couple times, he is still throwing up everyday, can't eat without diahrea following within minutes. Hes been freezing past couple of days so he been staying under alot of covers unless the wa sun come out and then he loves to sit out in it. He's not in any pain other than his back is sore from that fall. He does get very anxious though very easily and takes Xanax. That's the only med he is on period. He did say yesterday he can tell it won't be long; he said his heart just feels weak and worn out. He's had a few pretty bad headaches as well over last 2 days. Overall though he feels ok.
Thank you all for the prayers and kind words;)
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Wow - so glad to hear from you.
How are YOU doing?
:cuddle; :cuddle; :cuddle;
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John is so amazing.
And yes, how are YOU? :grouphug;
My thoughts turn to you every day. :cuddle;
Envelope yourself in warm loving thoughts.
Aleta
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I'm sure your heart aches to watch this. I can tell your love for him. Please take care of yourself as well.
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These are really hard times for you. You are a wonderful wife and caregiver, please stay in touch with us. Wow, 9 weeks. He is tough!!
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He is very tough. I hope you're managing to take care of YOU as well. *huggles*
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WOW. Thats the only thing I can manage to say. :grouphug; and :pray; for you both.
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johnswife, Thanks for letting us know. Our thoughts and prayers are with you. You are two very brave people.
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blessings and prayers and :grouphug; I can only pray that you all get the comfort and peace you need. with love :cuddle;
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:grouphug; :grouphug; :grouphug;
God Bless you and your entire family. What a strong woman you are.
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Thank you for taking the time to let us know John and you are doing. I know this is a very hard time for you and I am amazed at your strength -- and John's. I hope he gets some relief from the headaches, vomiting and diarrhea, it would be nice if you both could have a little peace through all this. :grouphug;
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Hoping for comfort for you and John. :cuddle;
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:waving; Hi - thinking of you guys.
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Just wanted to add that I'm thinking of you guys too.
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Just a quick update--johns still with us and feeling a little better but his site where his pd catheter is looks very bad. It had some blood around it yesterday, looks very puffy and like its getting an infection. He refuses to go back to the hospital to try again and have his 2 catheters removed. If you remember the lady time he went to get them out they admitted him and tried to force dialysis--he left AMA and so for 9 weeks he's had the tubes chest catheter and pd catheter in him and not being used. I'm worried this infection will turn out bad but he just says I'm going a slow painful way now and maybe this will speed it up. He's truly miserable at this point. Itching is really getting bad to the point he's scratching sores on his legs.
His back is still very very sore from that bad fall as well; I'm positive he broke something but he just refuses to do anything but wait on death. Very sad.
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This is such a tough road for you to travel. Do make sure you are taking care of yourself.
John's itching is likely due to his potassium levels getting all wonky. I have that problem when I stray from what I'm supposed to do ::)
Just know we are thinking of you.
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Did you get Hospice involved? They can ease his pain as he waits out his last days, and they will be a help to you!
Loving thoughts are flowing your way.
:grouphug; :grouphug;
Aleta
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Greeting Johnwife,
Do you think it’s too late to get him some mental help? Maybe a therapist can come to your house and talk to him. It sounds like he is off balance and off reality with life. Can you call a therapist and ask him or her for a home visit?
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This is such a tough road for you to travel. Do make sure you are taking care of yourself.
John's itching is likely due to his potassium levels getting all wonky. I have that problem when I stray from what I'm supposed to do ::)
Just know we are thinking of you.
I thought the itching came from the high levels of phos?? Just saying. I dont think I heard of high potassium doing that.
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This is such a tough road for you to travel. Do make sure you are taking care of yourself.
John's itching is likely due to his potassium levels getting all wonky. I have that problem when I stray from what I'm supposed to do ::)
Just know we are thinking of you.
I thought the itching came from the high levels of phos?? Just saying. I dont think I heard of high potassium doing that.
You're likely correct, I mix the two of them up constantly.
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My friend just finally called hospice for her hubby. She had avoided it because he didn't want it. Now that they are there she wishes she had called sooner. They are so gentle and sweet to her husband and while there are no rescue attempts to change the outcome, they are bathing him and doing everything on earth to make each day comfortable.
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My friend just finally called hospice for her hubby. She had avoided it because he didn't want it. Now that they are there she wishes she had called sooner. They are so gentle and sweet to her husband and while there are no rescue attempts to change the outcome, they are bathing him and doing everything on earth to make each day comfortable.
If your days are numbered, they should at least be as pain-free as possible. I am so glad your friend called hospice. They can lift so much of the burden from the shoulders of family members who should be made free to spend quality time with their loved one.
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If any loved one of mine is in their last days, Hospice is the way to do it. They were there for my mother & father, and they will be there for me & my husband when the time has come. They have a way about them that Dignifies the passing. They take care of it ALL, and it goes so much smoother for the ones left to Grieve.
Please keep us posted on how John is doing. So many prayers are being said for you all.
God Bless,
lmunchkin
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Hello Johnswife,
I have been following the struggle you, your husband and family are going through. And I wanted to let you know I say prayers for you every day.
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Thinking of you.
:grouphug; :grouphug;
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Thinking of you today and hoping you are taking care of yourself as well as John. Sending hugs and good thoughts your way. I hope John has some relief from the terrible itching and back pain. :cuddle;
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good luck !
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Still praying for you both... :grouphug;
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Updates???
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Johnswife, thinking about you. Have have been off a while, and wanted to check up on you first.
:grouphug;
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Been thinking of you and of course, worried too. Hope things are as okay as can be for you and DH.
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This is one of the first threads I turn to - my caring thoughts continue to be with you all. :grouphug; Let us know how things are going.
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Me too Bajanne it seems ages since we heard how thinks are going.
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You and John are still in my thoughts and prayers. I always check for updates when I come here. :cuddle;
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I always check this thread out first: being of a similar age, I wish the best for this couple. God bless. :bestwishes;
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Johnswife, thinking of you, praying for you. Come back to us when you are ready. :grouphug;
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Sending hugs....
:grouphug; :grouphug; :grouphug;
Aleta
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I always check...please take care of yourself. Still praying for ease and comfort for you both. Hugs to you :grouphug;
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praying that all is well with you and family.
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Has anyone heard anything??? It has been quite awhile, and havent heard a peep.
:sos; :sos;
Lisa
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Keeping them in my prayers for all that is needed.
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That was inhumane of the docs to leave those infected catheters in. It's such a simple procedure to remove them. Would have been the more well mannered thing to do since they likely gave him the infections when they put them in (and made a cool $10,000 bucks). He would have had a lot more peace with them out. I know from having a staph infection in my chest catheter and my friend had an infected peritoneal catheter--they are pure misery!
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I don't think I've said a word here, but I have been silently following. I have been keeping you both in my thoughts and in my prayers to give you strength and peace.
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Hello to all of you wonderful friends. I just read all of your kind words and they mean alot. First John is still here--I don't know what keeps him going but he's def a strong man. He is getting alot of fluid in his lungs now and coughing alot. This just started yesterday. He's also very swollen. But he's not in any pain other than sore from coughing. I'm sorry I wasn't on here in a while but first we moved again and took a while to get Internet back on. Second I've been trying to do odd jobs to get us through since I can't work outside the home because of John. I lifted a heavy transmission yesterday and back is def out today!! It's amazing what you can do when you have to. I pressire washed a house down the street last week and it went pretty well other than bleach burning my skin up. (Next time ill use gloves!!) anyways just trying to make ends meet so John doesn't worry about me and the girls. I found out ill be having a new grand daughter in December. My first granddaughter. I hope johns around to meet her but with this fluid and horrible cough I'm afraid he may not.
I loved reading all the messages and appreciate all the prayers and thoughts. They mean alot to us!
Thank you all and I will try to not wait so long for the next update. I think it's been 12-13 weeks now. Somewhere in there.
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thank you for sharing with us. You are so strong.
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Hello to all of you wonderful friends. I just read all of your kind words and they mean alot. First John is still here--I don't know what keeps him going but he's def a strong man. He is getting alot of fluid in his lungs now and coughing alot. This just started yesterday. He's also very swollen. But he's not in any pain other than sore from coughing. I'm sorry I wasn't on here in a while but first we moved again and took a while to get Internet back on. Second I've been trying to do odd jobs to get us through since I can't work outside the home because of John. I lifted a heavy transmission yesterday and back is def out today!! It's amazing what you can do when you have to. I pressire washed a house down the street last week and it went pretty well other than bleach burning my skin up. (Next time ill use gloves!!) anyways just trying to make ends meet so John doesn't worry about me and the girls. I found out ill be having a new grand daughter in December. My first granddaughter. I hope johns around to meet her but with this fluid and horrible cough I'm afraid he may not.
I loved reading all the messages and appreciate all the prayers and thoughts. They mean alot to us!
Thank you all and I will try to not wait so long for the next update. I think it's been 12-13 weeks now. Somewhere in there.
Wow Im so glad that you finally posted. You had us worried. I was actually going to send you an e-mail. I feared the worse. Yeah its been since July. Wow and he is still here! He is still not willing to start all over?? Its not too late is it?
Lisa
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so good to hear from you and know your are on all our minds every day wheather we post or not. Prayers and hugs, and all good things to help you get through all this. Why oh why does it have to be so hard :( Sending love, and :grouphug;
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That is really amazing.
Thanks for posting and letting us know.
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:waving; Hi johnswife, thanks for updating us. You moved in the middle of all this? Wow!
Sending you lots of hugs! :cuddle; :cuddle; :cuddle;
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John is remarkable. What a testament to the human will. :grouphug; :grouphug; :grouphug;
And you are amazing. You deserve a medal for your dedication and perseverance. :flower;
I am sending warm hugs and good wishes to you both. :grouphug; :cuddle; :grouphug; :cuddle;
Aleta
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johnswife - Thanks for letting us know what is going on with you and John. I'm glad John is still with you, he has an amazingly strong will and clearly is not ready to leave you and the girls yet. I'm relieved to hear he is not in any painand I pray that this time can be as peaceful as possible for all of you.
:o Speaking of strong... did you say you lifted a transmission and pressure washed a house?! That gives whole new meaning to "odd jobs"! My body aches just hearing about it. We never know all that we're capable of until we have to do it, do we? Please be careful that you don't hurt yourself. I know you are trying to ease John's mind, but putting yourself in traction is not the way to do that.
Congratulationson your 1st granddaughter! That's a Christmas present you can really look forward to!
Please tell John and the girls that we are thinking of them and sending lots of hugs and positive energy to you all. :grouphug;
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Sending you many *huggles* ... you're both so amazingly strong!
:grouphug;
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You are thought of each and every day, we are all rooting for you and the family. Glad to hear that all is still okay. Please remember that we are all here for you.
Debra.(http://:bestwishes;)
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Hi Johnwife,
It is good to hear that John is still here. Congratulations on your first granddaughter!!! If God permits John to live to see his granddaughter, I hope that will encourage him to give D another chance. Anyhoo, I’m just not giving up on him yet and still praying for him.
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Thanks so much for posting. We've all been following your story and can't help but feeling sympathetic. :cuddle;
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after 12 to 13 weeks, it is pretty certain that John was not truly ESRD when they started dialysis, symptomatic, yes, but he must still have clearance at some level. I appreciate that he has been through so much, and the doctors are doesn't seem to have helped (poor management of catheter, forced dialysis etc.), it just seems such a shame that he won't have dialysis. whilst he may perceive it as poor quality life, it doesn't sound as if if has a great quality now. I really believe that had he continued with the dialysis and if needs be, switched doctors and dialysis units to get a better experience, that he may have been able to realise that it was better tha. going through what he is going through at the moment. I really do understand that it is his decision but I feel sad everytime that I think that he has probably been driven to this in part by his poor experiences with and of, his medical personnel. nonetheless, he must be one tough cookie, as I would,have caved in long ago for the short-term 'fix' of feeling better. sure when my time comes that I will OD on a bunch of bananas (only kidding)
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You are very strong. I'm so sorry things are rough for John. A granddaughter is something to smile about.
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Actually he was most def esrd. His GFR was 5% when they started and it was 3% last check. He's just a stubborn country boy!!! It takes alot to get him down. The doctors and hospital both didn't think he would last 2 weeks. I think he vomits so much and often that its keeping just enough fluid off to survive but not to really help in any way.
He had a real bad night last night--thrower up 9-10 times, no sleep, and pain, I don't know how he does it.
Thank you to you all and hugs to everybody;)
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Actually he was most def esrd. His GFR was 5% when they started and it was 3% last check. He's just a stubborn country boy!!! It takes alot to get him down. The doctors and hospital both didn't think he would last 2 weeks. I think he vomits so much and often that its keeping just enough fluid off to survive but not to really help in any way.
He had a real bad night last night--thrower up 9-10 times, no sleep, and pain, I don't know how he does it.
Thank you to you all and hugs to everybody;)
You should ask him is dialysis as bad as throwing up this much?? Would it be that bad for me to go somewhere else and start all over. If he is or was in that much pain, itching, throwing up, etc, ask him is it really better then kidney dialysis. I could be wrong, but I dont think its too late to slowly get him back into a dialysis.
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Just sending another batch of hugs to you and John.
:grouphug; :grouphug; :grouphug; :grouphug;
:flower;
Aleta
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Lilllupie, my thoughts exactly.
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I too wish he would reconsider his options as I watch my own husband's struggle . Sending you best wishes - you are very courageous .
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lillupie and amanda - I think you've missed the point. Read early posts and please respect John and his wife. I'm sure they've been surrounded by thousands of people with opinions in line with yours. They are not stupid. Do you really think that, as johnswife listens to her husband's agony she is not smart enough to consider making the suggestions or asking the questions you suggest? Do you think John does not know that perhaps a dialysis session might improve his health temporarily? Support, don't challenge and don't assume. I hope I'm not out of line when I say that this board is a place for johnswife and others to come for support and hugs on their journey, not people second guessing and challenging their decisions. We've all had people who know much less than we about our situations who try to step in and tell us what to do. That's not what this thread is about. And moderators, if I'm out of line, please delete me. I want only to provide a safe place for Johnswife to share without judgement.
Johnswife - much love to you and John. You are two of the most courageous people I know. I send you strength and comfort.
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I'm sure that John seriously considered continuing or stopping dialysis. I can see why he could want to stop. I think we all have that choice. I just feel bad for his whole family. It must be difficult to go through this as the patient or the caregiver.
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yeah,
Im really sorry for what I said. :( Im sorry.
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johnswife,
thanks for the update.
As I mentioned before I respect your strength to stand by your man though this difficult path, when I read "trying to make ends meet so John doesn't worry about me and the girls", can not help but with tears in my eyes. I have no words ... but just want to let you know, I really admire you. Will continue keep you, john and your family in my prayer.
Rose
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:waving; johnswife,
Thinking of you guys today and wanted to let you know. I keep hoping that this part of John's journey could be pain free and peaceful. Please take care of yourself and know we are thinking of you often. :grouphug;
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Sending more hugs your way....
:grouphug; :grouphug;
Thinking of you.
Aleta
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This is also a thread I look for for updates on and have been wondering how John was going.
I hope he finds moments of comfort as he struggles on, and you (Johnswife) also continue to handle things as best as possible in these difficult situations.
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Don't worry I took no offense. Believe me we all argue with John alot around here!! He fell again in the middle of the floor. He's still vomitting but not as much but the diahrea is horrible. Yesterday he slept almost the entire day just waking up here and there but never over an hour. I had to run out at 1:00 am to krogers to get him some parfait. He doesn't eat or want to eat much but when he does want something I try to get it. He has said a couple of times that he thought about going back on dialysis but not because he feels any better on it. He's mad that once he decided to stop and accept the outcome that instead of getting peace finally-he's going through a whole other kind of hell. He says he's in purgatory.
I just want him to not hurt anymore. And I although I try to be supportive- it gets hard. He's so miserable that he is def grumpy and there are times that he's almost mean. But I'm sure no one knows what pain he's in but him. He needs to understand we all care for him and there are times he doesn't. But I have to tell myself that I have to look over certain things but it does get hard.
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Bless your heart. Could you call his doctor for maybe something to keep him comfortable like morphine?
:grouphug;
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:grouphug;
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johnswife - Is he still refusing to let Hospice come? I think they could make him at least a little more comfortable. And maybe give you some breathing room. I think you're right about no one but John knowing just how much pain he is in, and maybe that's a mercy for you. You are carrying such a heavy load right now and maybe having him get grumpy, and you get irritated (who wouldn't?) keeps just a smidge of the heartache at bay. (Sounds silly now that I've read it, but it made sense in my brain! :waiting; )
Anyway, I wanted you to know that I'm thinking about you, and hoping you'll have the best possible day. :cuddle;
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It's hard to think about that at some point he will be gone. Sad that it has to be this way. Sending you {{{HUGS}}}
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He sounds like he has most of the same issues that I have/had, all I can say is the pain gets a little better with time and if the blood sugar is under control the eyes maybe able to be fixed. I'm a chiropractor and tried everything else and the only thing that helped with the nerve pain was acupuncture. Good luck & I hope he finds what is best for him & you.
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My prayers are with you both. Stay strong.
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OH, this must be so hard. Just think about the happier memories when you can.
:grouphug; :grouphug;
Aleta
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This is just so tough I can't imagine how you must feel :(
This may sound heartless somehow but reading your last post about how he would have felt he would get peace following his decision but all he's got is more struggle - it occurs to me, in a way, that given they all say that once off D you'd last 2-3 weeks - and look at this it's been a few months now? Maybe longer? It's almost like facing that choice and making it accepting a relatively quick end that the universe has taken even that "choice" from him and I can understand that because the current situation just gives him pain and struggle and nigh on zero quality of life. Like you, I read this ongoing story, and just wish he could be pain free and his struggles, one way or the other, be over.
I wonder if his thoughts regarding maybe going back on D are because his body seems to be telling him, and us, that it's just not ready to go yet? Maybe he sees how this is affecting you and the extended family?
I'm so sorry this is so drawn out - it must make it so hard, every day, to come to terms with his choices and decision.
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Hello all
What a night. First John had a nice night and is still resting very well. He hasn't thrown up in almost 24 hrs which is great. Feet and ankles are about the size of mini basketballs though. I on the other hand was at tge hospital all night with my daughter in law who's pregnant. We got in at 6:30 and she's ok by the way as well as the baby. By the way both new grandchildren will be girls;)
Today is my 41 birthday, had no sleep, and I have to mop kool silver on a trailor roof today so ill be worn out tonight but its a beautiful day so time to get started. Gotta start working on Christmas --9 weeks to go and 6 kids so no time like the present;)
You all have a great and healthy day
To richardmel -you are so right. He had accepted his fate and was at peace with it and life wouldn't even let him go in his own way but miracles can and do happen so maybe there's a bigger reason he's still here. I still hope and pray that one day he just wakes up feeling great and back to his old self. I'd love for him to have one great day!!! He doesn't really have any of those anymore. You just have to cherish the time you do have and take what you can get. He's depressed because he feels he's let me down and not the man I married. He couldn't be more wrong!! I think he is one of the strongest man I know and I couldn't be more proud and honored to have been his wife for 25 years and to continue this journey with him good times and bad.
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I know your husband has brought much joy into your life. If he feels like he has disappointed you, maybe you could spend the time remaining to him reinforcing that idea. Even though he has accepted his fate, it must still be such a huge psychological struggle for him, so some tender words would do him a lot of good. I know that I have had similar thoughts, that maybe my husband's life could have been much better had I not been ill for almost the whole time we've been married. When he tells me that that is not true, it makes me feel better.
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Hey All! Everytime I read one of Johnswife's comments, I just want to cry! It makes me so upset and so sad, to think of the awful struggle that this man has to endure; not to mention the awful way it is making his poor wife and family feel.
It also makes me upset with myself, for feeling sorry for ME and my illness, and what ME and my family go through with this GOD awful disease. Some days, as bad as I feel, I know, that I'm not even close to what they are feeling or going through.
God Bless you, Johnswife, God Bless you, John and your entire family. I pray for you each and every day, and pray that GOD will Bless you and ease you through your struggles and pain. I wish a MIRACLE for you.
:grouphug; :grouphug; :grouphug; and so many more :grouphug;
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Johnswife, you are one very special person and John is very lucky to,have such a person as his wife. my thoughts are with you,and I do think about you even when I am not reading these posts.
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:Kit n Stik;
Hope you guys don't mind but I needed to vent and talk to someone. Well today started out well and optimistic but ended up pretty crappy. John got pretty sick around noon, fell trying to walk very hard and I had a time getting him up. He's 260 and I'm 130 soooo. Anyways he thrower up all evening, couldn't hold anything down and so he went to bed. I didn't get to do tge roof I was going to do because too much going on but the most depressing part of today was I turned 41 ( which I know we should stop counting after 35;) but its as if no one remembered. I know we shouldn't care but it still hurts. Now I can't say no one-a few old friends sent me an email and 3 of my 6 kids remembered. John forgot most of the day but of course that's perfectly understandable. He had a rough day poor thing! But my parents forgot, all my siblings and I have 4. It just feels like a crappy long day and I'm just ready for it to be over.
Sorry but I needed to vent and you guys are like family so thank you for that;)
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I'm sorry! It's hard being a caregiver...but I wish you a very happy birthday! vent on!! that's what this board is for.
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:birthday; :flower; :grouphug; You're in my prayers, johnswife
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WEll well,,,, It's a tad late as you've already had a crappy day but.................. :birthday; Lady. :grouphug; I wish for you that this night will bring you some peace and some happyness comming from somewhere, and that tomorrow, well, that you will have some moments of goodness that helps relieve some of your gosh awful things your going through. Prayers always, with Gods blessings on you... :cuddle;
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I'm sorry you had a terrible birthday. :birthday;
Maybe they all thought you did stop at 35 and that you'd be mad at them if they remembered? ;)
Just know, there are a lot of people here who think about you a lot and wish you well for the year ahead.
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Johnswife - don't you DARE be sorry at all!!! This is what we are here for - if all we can do is support you as you vent and if it gives you any small measure of comfort to get that off your chest than you do it!!!! What's more it's not unreasonable at all to expect/hope with all you are dealing with that most people around you - those close like kids and parents - could even remember or take the time to recognise YOUR day because heavens you spend all the time putting everything and everyone ahead of yourself it's only fair you should feel hurt that all these other people forget(or at least not say anything). I'm soon to leave the land of 41 myself and I agree don't count, but it doesn't stop you thinking of it when it is your bday - I know I will in a few weeks.
I send you big long post-birthday HUGS!! Scorpos have to stick together! :grouphug; :grouphug; :grouphug; :grouphug;
And I also wanted to add that you are one awesome lady with how you feel and act specially in relation to John. Most of us would be so lucky to have someone like you in our corner and I can understand that John feels like he has let you down - because he clearly knows better than the rest of us, what a special person you are and how valuable that is to have.
All I can say at this point is that I hope BOTH of you have a good day coming up (all relative I know) and I hope YOU can find some time, for you, to find some peace - even if briefly.
And I hope you get a surprise from someone that treats you and reminds you how special YOU are.
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Happy Belated Birthday to you. Keep in mind that everyone here is behind you 100% and we are here to listen to you and we love you. You are an amazing woman. I have also been a caregiver much in the same situation you are in. It sucks!!!! As my Mom always said, " Keep your chin up".
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I'm awestruck by your resolve to stand by your husband and honour his decision. I think Richard said it all beautifully - it doesn't seem fair that you both go to all this effort to come to terms with his wishes and then things seem to go so much harder than expected. I hope that there is a peaceful resolution to this, and that you and John can enjoy each others' company in the time that you still have together.
And happy birthday! :grouphug;
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If you can't come here to vent, where CAN you go??
Never apologize for using us as your collective shoulder to cry on. That's what IHD is all about. I agree that you are showing far more fortitude than the ordinary person, but none of us are beyond getting down at times.
:grouphug; :grouphug; :grouphug;
I wish we could just come and hug you and sing Happy Birthday to you. :birthday;
Please know that I am thinking of you every day and wishing that things were easier for you. Hold on to those happy memories. I know, I've said that before....
Aleta
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Happy Birthday and may you continue to be blessed. You are a Gos send.
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You really wouldn't want me to sing Happy Birthday for you, but I hope your day improved and someone remembered to tell you how much you are loved. It's always nice to hear that you are appreciated, even when we know that we are.
I know how you feel, all I got for my birthday last week was a card from my husband, and a horrible stomach virus! Spent most of my big day in the bathroom. :puke; At least I got the day off. :rofl;
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:birthday; and many, many, more. Stay strong, I really admire your strength.
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:bestwishes; :birthday; :flower; you are one strong lady , but I do feel that in all of this that you are dealing with with John, that you and your needs are getting lost. could your family step up to the plate to give you some respite? it really isn't just about John, it's about you too.
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Johnswife - :birthday;
Happy Belated Birthday! :birthday; I am so sorry for all that you are going through and I hope you and your family find the peace that you desire soon!
NewGrl
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I would like to send Johnswife a little birthday gift. Can anyone suggest how I might get her address?
I would also like to suggest that anyone else who is able think about doing the same. What do you think?
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Wow it's been over 14 weeks since he had dialysis - I think - was it July 15? ???
So hard to fathom.
:( I am so sorry about your birthday. What's with your family???
Please send me your address and we will celebrate! :bestwishes;
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I would like to send Johnswife a little birthday gift. Can anyone suggest how I might get her address?
I would also like to suggest that anyone else who is able think about doing the same. What do you think?
I think thats a great Idea!! You should pm her.
Lisa
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:Kit n Stik;
Hope you guys don't mind but I needed to vent and talk to someone. Well today started out well and optimistic but ended up pretty crappy. John got pretty sick around noon, fell trying to walk very hard and I had a time getting him up. He's 260 and I'm 130 soooo. Anyways he thrower up all evening, couldn't hold anything down and so he went to bed. I didn't get to do tge roof I was going to do because too much going on but the most depressing part of today was I turned 41 ( which I know we should stop counting after 35;) but its as if no one remembered. I know we shouldn't care but it still hurts. Now I can't say no one-a few old friends sent me an email and 3 of my 6 kids remembered. John forgot most of the day but of course that's perfectly understandable. He had a rough day poor thing! But my parents forgot, all my siblings and I have 4. It just feels like a crappy long day and I'm just ready for it to be over.
Sorry but I needed to vent and you guys are like family so thank you for that;)
Happy belated birthday :birthday;
Never apologize for venting here my understanding is that the legendary Epoman created this place so we could come and say anything we want! and my experience has been that everyone here understands better that any medical professional or social worker or other non dialysis patient or family member/caregiver.
we dont mind because we have all been there at one time or another
Your husband sound s like one tough SOB and I must say you do too.... People like you make our lives livable ano no matter the outcome of this situation you should be proud of the sacrifice you have made and the exceptional support you have given him...
Happy happy birthday and thank you for being you!
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:birthday; :flower; :bandance; Happy Belated Birthday! There are so many people to whom you and John are so special, you are an inspiration to the rest of us! Thank you... :cuddle;
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Hello Everyone and thank you very much for all the kind words and thoughts. They mean alot to me. John is about the same but no worse so I guess thats a good thing. Just doing alot of vomitting pretty much everything he eats now doesnt stay down over 20-30 minutes and comes right back up. sleep at night is pretty much non-existent but he sleeps very well in the early morning and until after lunch so thats good. I said something this morning that I thought Id share--He said do you know what its like to just WAIT to die. He said the waiting is the hardest part and you know its coming but the waiting is torture. Hes had a few pretty bad heart pains over past 2 days and he says he can tell hes getting closer and just feels like hes being drained a bit more everyday. And yes he is one tough SOB--I tell you!! strongest man Ive ever known.
:stressed;now for my big problem of the week--As you all know I have 6 children --3 are grown and 3 girls at home ages 8,10,and 14. Well my 14 year old daughter was sexually abused in the 3rd grade and never got over it. She changed completely but afte a couple years of therepy ect I was hoping she was getting better--I found out the hard way shes not!! SHe has been cutting herself to deal with the pain which I cannot understand or wrap my mind around how that would help with pain. Im scheduling her for another visit to the phsychiatrist but she says the last thing she wants to do is talk about the teacher who abused her and it would make her worse. She has at least 10 cuts on her right now and I dont want to worry john but have no idea of what to do to help my daughter. She is also being bullied at school and says she just wants to die. I take everything she says very seriously so Im terrified for her. She has so much anger built up in her. They didnt convict this teacher by the way even though our daughter wasnt the only victim. There were 3 more and because hes rich and it was a small town he got away with it so that made everything much worse. I too was abused from age 6-12 by more than one family member but I dont ever remember wanting to hurt myself. I burried it and in my family ever after I told they just swept it under the rug and left it. My parent still speak and have dinners with one of the men who abused me so I dont know. -- I did try suicide at age 16 though and thank the lord I made it through and found john at age 17 and have been with him ever since. I just wanted to know have any of you went through childhood depression or something like this and have any thoughts?? I dont know what to do and would absolutely loose it if something happened to my little Katie. :rant; Id love to kill that man that did this to her!! sicko doesnt deserve to breathe but I know in my heart that he will have his day with the good lord and will get everything that is coming to him. Ive never met up with him after the trial but he wouldnt want this little 130 lb woman to get a hold of him either---Id tear his eyes out and rid the world of one of the many cockroaches claiming to be human. :rant; sorry bouth that
by the way my address is po box 3007 somerset, ky 42564
if you all wanted to send a card or any advice. but you really dont need to!!! In years I dont expect or get anything for birthdays from anyone so Im use to it. I got more happy birthdays here than in the past 5 years combined!! :clap; than you all!!!!!
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:waving; Hi johnswife, thanks for updating us. You moved in the middle of all this? Wow!
Sending you lots of hugs! :cuddle; :cuddle; :cuddle;
I echo that sentiment. You need lots of :grouphug; and rest, too. God bless you!
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Hi Johnswife. So pleased (not convinced that's the right sentiment) to hear that John is soldiering on. Sending you both serene and peaceful vibes.
With regards to your daughter ... like you I have no real understanding of the need to cut oneself (and like you I do fall into the contemporary category of having a reason to do it) but I do work with teenagers who cut themselves (I'm not professionally trained or anything, I just happen to know students who do this to themselves). My gut reaction would be that the fact you know is a good thing. Whether you found out by accident or not, you now know and she knows that you know. Don't try to understand why she does it, because she probably couldn't vocalise her reasons even if she wanted to. Just be there and let her talk to you about ANYTHING. ANYTHING is capitalised because it is highly probable that she's reverted back into a dark place with John's decline in health and the choice he's made ... she's a hormonal child on the cusp of adulthood and the likelihood is that she's going to lose her dad sooner rather than later. I would lean towards that being the primary reason for her current anger and pain and a visit to the psychologist would probably help with that if she feels unable to talk to anyone else within the family. A professional would be able to advise on strategies as a way of directing the pain away from wanting to hurt herself.
If she's being bullied at school then this needs sorting immediately. The school needs to know that when she's away from home they're in loco parentis and they need to be safeguarding her welfare; she needs to feel secure and happy at school especially with everything that's going on at home. If the school won't deal with it then take it to the next level. They'll have a bullying policy in place and they should be following it. If you're not able to do this yourself can someone do it for you? Are the school aware of the situation (the bullying, the self-harming, John ...)? If not, make them aware so they too can support her through it all.
I really hope that you get through this, together. I doubt she really wants to die so try not to worry about that part too much; I remember telling my mum that I wanted to die and looking back it must have frightened the living daylights out of her, but all I really wanted was somebody to listen to me and cuddle me and make me feel safe.
She seems able to talk to you so let her talk. Don't ask her leading questions, just allow her to tell you how she's feeling and the reasons why (if she can). Do you get to have quality time together or is that impossible at the moment?
Sending you all oodles of *huggles* ...
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I agree. Your daughter talking to you is a good sign. Keep checking in with her. Make sure she knows she can talk to you any time. And try to get her to a counselor. It can help her.
I'm sure it's tough for John waiting to die. I remember before my first transplant just laying on the couch for days. My body knew that I was starting to die. It was something I knew unconsciously. I'm sure it's worse for him. I'm so sorry for you both. His anguish comes through. Peace to you both.
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If youi possibly, possibly can, get her to some sort of professional counselling. Our children, one male, one female were molested by a family friend - they both got counselling but our daughter at 30 had to go again when she had her own child. So it's just something that will have to be dealt with ongoing and while a parent can help as much as they can, they have so much emotional skin in the game, it's difficult. Add that on top of what you're already dealing with and it's almost unbearable.
Perhaps you could speak to a counsellor together and set some boundaries as to things that she will talk about and things she won't. At least a professional could probably gauge if she's truly in danger of self-harm other than the cutting. If she doesn't want to talk about the actual abuse, perhps she can talk about how things are going at home and how she is dealing with everything else.
If you possibly can, get some professional help.
Take care.
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i am so sorry to hear that you havethis to deal with too. Johnswife, do you think that this is what it is truly about? she must feel so helpless watching her Daddy go through what he is going through , and that must go for your other children as well. is there a councillor at school that could talk to her? could you move her o another school? this doesn't sound good, I agree.
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Hi johns wife, Glad to her from you. You know it is sad about your daughter, however, the best thing you could possibly do is continue to show your love and support for her, it's very hard on a person who has been abused. I was in your daughter shoes and hated the world for many many years and felt if I harmed myself, it would make the pain go way, it never does And what I learn is that only time heal your wounds and time will heal your daughters wounds. The more you try to stop her And interfere, the more she is going to do it. It's attention seeking. Pray for her And Ask god to give you strength to continue. Even though she knows its wrong and therapy may or maynot help, but she has to open her mind to it. Hang in there, you are a strong woman. Praying for you all
Debra
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Hi Johnwife,
I really don't know what to say at this point, all I know is God won't give you more than you can bear. Trust in the Lord with all your heart; and lean not unto your own understanding. In all your ways acknowledge Him, and He shall direct your paths. There nothing impossible for God to do. He will not fail you when you ask Him for help. Just remember, God does not force His Self on anyone. Believe in Him and He will help you.
I'm still praying for you and your family. :pray;
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I have an update thats not very good. John went to the hospital last night with blood pressure of 223/134 and was just very sick. They are sending hospice out today and here are his new lap nos. They are incredible being that he is still walking around.
severely anemic--6.5
BUN---103
creatinine--18.5
pottasium--6.5
rbc--2.3
EOS--0.69
EOS %--9.5
calcium 6.8
all very bad numbers I know and he is just so weak and sick today. I will keep you all updated.
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johnswife, You are one brave family, I hope it will be over for you very soon. My prayers and tears are with you all.
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I'm glad you're getting help from hospice. They will help you. This is so sad.
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I, too, am glad that hospice is now going to be in the picture. You have shouldered so much.
:grouphug; :grouphug; :grouphug;
I continue to think of you. :cuddle;
Aleta
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Bless your hearts, all of you. you are held up in all our hearts..... and my prayers are with you :grouphug;
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Keeping you in our thoughts and prayers.
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Thinking of you as well as sending prayers your way to you & your family!
:grouphug; :grouphug;
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:cuddle; Thinking of you all
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Sending prayers and :grouphug; :grouphug; . Hoping your family finds peace and keeping you all in my thoughts and prayers.
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All this is very very sad, but so glad that Hospice is there. They will help tremendously. Keeping you in my prayers, JW, always.
lmunchkin
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:grouphug; :grouphug; :grouphug;
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So so sorry for all of your suffering and pain......
I will keep all of you in my prayers.
Olivia
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:grouphug; Big love to you Johnswife and your beautiful daughter and strong as an ox husband. It's such a sad time, and hard to have nothing but hugs to offer. :grouphug; :grouphug; :grouphug;
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:grouphug; :grouphug; :grouphug;
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Johnswife,
Im thinking about you everyday. Im really sorry about your husband still suffering. Im surprised that he is alive with those numbers and the potassium. Look how far he has gone if you say his numbers are this bad. This has been going on since July.
Please keep us posted.
And we will keep you in our thoughts and prayers.
Lisa
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Sending loving thoughts your way....
:grouphug; :grouphug; :grouphug;
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:pray; :pray; :pray; :pray; :pray;
lmunchkin
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Johnswife, keeping you in our thoughts and prayers for all that is needed at this time.
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heavens - those numbers are(were) pretty scary in a number of areas - but I agree with all those weeks and weeks and weeks without D things like the potassium are actually probably pretty good.
John is a fighter - with all the pain and struggle he has.
my best wishes go out to you both
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Hello everyone. First he is still with us. It's now been well over 3 months. Sleep is almost non-exhistant at this point. The only real pains are the extreme itching(constant!!), he lays down and within 30 minutes fluid makes it where he can't breathe so then he sits up and his legs and feet feel like they are going to bust open. He has horrible headaches from the high blood pressure as well. I just don't know what keeps him going or how!! If I'm ever not on here for a few days please don't think the worse. If and when John does go I will for sure make a point to update you all as I feel you have went through this long journey with us.
Hugs and best wishes to you all!!!
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God be with you both xxx
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Can Hospice come in and administer comfort drugs?
:pray;
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God bless you all and bring peace. :grouphug;
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you know I've tried to take absence on my treatment schedule,,, i last 2 weeks without dialysis, but the result was worse,
From that time we are really low at money, being guilty for myself, I decide not to take dialysis, and it did last for 2 weeks, after that at night
i was admitted to the hospital by ambulance. I stay at the hospital for 2 weeks, and we have this huge bill.
that was stupid of me. i almost died on that moment as the doctor said. i can't move my body, i can recognize around me,
and they told me i keep saying my mothers name, can't really remember what happen at that time when i arrive at the ER.
so convince your patient to take his treatment so he/she wont suffer just what i suffer before.
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ceb3370 - Her husband John made the decision to quit dialysis completely, and expected to pass away by now. He has not and it's been a tough 3 months for him and his family.
I wish he would do a couple of dialysis treatments, not for survival by removing toxins, but for fluid removal to give him comfort.
Take care johnswife. :cuddle; :cuddle; :cuddle;
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You have an amazingly strong husband & you have the same strength in you. A hope for a speed out come :pray;
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Every time I come on here, I check to see how you and John are doing. I am amazed at how strong he is, you both are. God bless you both. You're never far from my thoughts and good wishes. :grouphug;
Anne
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I always check this post when I log in and am amazed and thrilled to read that John is still with us. My thoughts and prayers are with you and your family as always.What a strong brave man he is. Love all the way from Ireland.xxx :grouphug;
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You are all such amazing people. God Bless you both and keep you at least comfortable.
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:grouphug; :grouphug;
My thoughts and prayers are with you and your family.
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Hello everyone. Sorry for taking so long. First off Hospice is great!! They are keeping him conforatable and not in much pain. He is finally getting some sleep at night which is great and they have him on something for the itching. They are also helping us get some other things in order and even helping with getting my daughter someone to talk with. They have gotten him a hospital bed, oxygen, walker, and a side table. I just cant say enough about how good they have been to us. Now as for john both hospice nurses said when they go this chart to come out they could not beleive that he could still stand, walk, or was even alert for that matter. The one lady said she has been a nurse for over 20 years and while she has seen worse labs -- never with a patient that was still up moving around and alert. They dont think he will make it until christmas though but as you all know its been since july and he is still here so I think he will go when he is ready or gives up.
I also would like to say thank you thank you thank you to those of you who sent cards!!! I greatly appreciate it and love you all. :grouphug;
I will keep you updated on his progress. He is sleeping comforatable at the moment so that is a blessing.
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I am so glad you are getting some support. I think of you every day.
:grouphug;
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I, too, am glad that Hospice is now helping. John is amazing. Hugs to all of your family.
:grouphug;
Aleta
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glad to hear this news in spite of the circumstances.
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Thanks for the update. :cuddle; :cuddle; :cuddle;
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God do answers prayers! Glad things are going okay with you. You and your family are still in my prayers.
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I'm so glad that hospice is working so well for your family. :cuddle;
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So glad you and John and your daughter are getting the support you are getting. I've never been directly involved with Hospice, but I have heard wonderful things about the emotional and practical support they provide. I think of you often and pray for you to have what ever you need when ever you need it.
Wish I knew the perfect thing to say... :grouphug;
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Sending you lots of hugs.
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we are doing it at home with next stage--it nowhere has the bad affects your husband gets-and our nurse is very careful about not pulling too much water from me--our nurse has horror stories about clinics--consider the home method
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we are doing it at home with next stage--it nowhere has the bad affects your husband gets-and our nurse is very careful about not pulling too much water from me--our nurse has horror stories about clinics--consider the home method
I agree. I like the idea of NxStage. But her husband is not going through with dialysis.
Lisa
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Thinking of you....
:grouphug; :grouphug; :grouphug;
Aleta
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Hi guys. Still here. He's starting to hallucinate though and talk alot while sleeping. He's sleeping alot. Hasn't eaten anything since yesterday. He's not in any pain and resting comfortably. Of course as strong willed and stubborn as he is; he will probably be back up and walking in a day or 2. God bless you all and hope you are all doing ok;)
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I know he is stubborn, but the sleeping and not eating sounds like he is getting much closer to stepping out of this life. I'm thinking of you. It has been simply amazing that he has held on this long. I'm so glad that he is comfortable.
How are YOU doing?
:cuddle;
Aleta
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Have you both in our thoughts and prayers. :grouphug;
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God bless you, and keep him comfortable. :pray; :pray; :pray; :pray;
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:grouphug;
lots of love, and strength Cas
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You are on everyone's mind Johnswife, and I like so many others hit this post first thing. I hope he makes it thru Christmas anyways. God will decide that for him. You are all in my prayers.
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I'm glad to hear that John is not in pain. I hope you are able to get more rest now that hospice has made him more comfortable. You and the girls (as well as John) are in my thoughts often. :grouphug;
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Thinking of you and John :cuddle;
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I'm glad John is not in any pain. You and your family are still in my thoughts and prayers. Please remember to take care of yourself as well as you are taking care of your family. God Bless!!!
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you can actually if you feel your ready
there was a couple that was at my center he was on diaylsis and his wife would always be there
and all of sudden they wernt there anymore
so i had ask and i didnt realize he was 8oyrs old'
he didnt look that old and his wife was in her 60s.. she didnt look her age either
but they decided that it was time and he wasent going to come to the center anymore
he had enough.
dont know if he past or not
but im sure he has
for they usually give a patient 6months if they refuse treatment
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Updates?
Still thinking of you guys!
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Hi-This is the hardest thing ive even wrote but my husband died at 5:30 on December 5th. He died in his sleep and you know we are suppose to be ready after all this time but Im not. Id give aqnything for one more hug or just another hour to tell him what he means to me. I just let him go--I should have made him fight harder or go back or someting. aNow i cant. I was awake and I heard the odd breathing and I just laid there hugging him and didnt shake him or wke him back up. WHY?????????????????????????????????????????????????????????????????????????????? He might of woke back up if only for a day but I just let him go. Why didnt I do cpr--I mean I was just numb. I cant handle it. We had both granddaughters born within 24 hours before he passed. One only 2 lbs. Our 3 young girls are devastasted and kelly my 11 yr old is walking around with her daddys hat on. This is just bull crap. He was so strong for so long. He was out Hoss and I guess we thought no matter what those doctors say he will pull though. Its 5:50 am on the 6th so hes been gone for just over 24 hours and people please hug htem and love them now---I told him I loved him but you iknow every day I would get aggravated--more scratching his back, more rubbing his legs, shoulder hurting from all the lifting and tugging but what I wouldnt give to rub his back right now. I have t be at the funeral home early in the morning and I just dont know If I can take it. The night before he died he set up on the bed and out 2 youngest girls sung to him and he had them play alabama roll on eighteen wheeler, and a bunch of others. they hugged and kissed him and he cried. It meant the world to him but why didnt I fight harder with him!!!!! I maybe could have woke him back up and i just let him lay there---the pain is unbearable and all the what iffs I cant deal with. I gotta go but thank you all for the kind words; he never knew about this site or all of you. My biggest hope and what I pray is that he went to heaven and is ok. AHe isnt in anymore pain. and you know he died with those dam tubes still in him!!!! He was scheduled to get them out at one the day he died. I know he prayed with a preacher the night he passed but I just dont know and its breaking my heart. If I knew I think Id be ok---but what if he needed anothe day to get saved ad I could have gave him that and let him go. It may be a few days before i can get back on here but tell them now what they mean to you and love them please.
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Johnswife :grouphug;
Don't blame yourself for John's going. It must have taken great strength to let him go. And great strength for him to have made the decision to go. Take care of yourself and your family. I wish for peace and continuing strength for you
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God bless you Johnswife and your family as you mourn the loss of John. John is resting in heaven, no more tears, no more pain (((((hugs))))
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Bless you johnswife, and prayers for all that is needed. :grouphug; It sounds like he was ready to pass over, and delaying that would not have been what he wanted. As rough as it is, it was time. We will be here when you are ready.
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You have nothing to regret. We have been with you through this journey and we are amazed at your selflessness and your care for and of John. He is much happier now. I am glad that he prayed with the pastor. Our God is so merciful. I am also glad that he had such a time with the family. I know you can't help but miss him, but please look after yourself now. That is what I know he would want. My caring thoughts are with you all the way :cuddle;
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I am so sorry for your loss, but I am thankful that your husband's suffering has come to an end. As you chronicled his daily struggles, I grew more and more horrified; we all know how the body and the spirit suffers as the kidneys shut down, and I hated seeing your husband suffer in that way.
If you had shaken him awake, yes, he MAY have survived one more day, but that means one more day of suffering. Surely you didn't want that. You let him go because you love him and wanted to show him mercy. That's real love, selfless and enduring.
You are in our prayers.
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I'm so sorry for your loss. This must be so hard. Do not blame yourself for anything. You loved him and took care of him. His body gave out. I'm sure he felt your love.
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Being on the other side of this (the patient side, that is) all I can tell you (which won't be much comfort now, but I hope you'll understand my message later) is that you did a very brave and kind thing for him by letting him go and not keeping him alive another hour or day.
You miss him, but he is no longer suffering. Your life and that of your familiy members can now go on. His time was over, and he knew it.
Whatever comfort it may bring you, please understand that you made the hard choice and did the right thing.
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Lisa, I'm so sorry that you and the girls are in such pain. I know there is no way to really be prepared to lose someone you love. Even when the brain knows what is coming the heart still hopes and prays for more time. John was a strong man and you have both fought a long, hard battle since July. Maybe he was just ready to rest. I think the 'what ifs' are a natural part of grieving but you should remember that you did everything John asked of you and more. John knew he was loved and cherished, and that he would be missed. please know that we are here for you when you need us.
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He didn't need another day, he went on just like he wanted to. He finally found the way to leave, and was ready to go to the next place. It had to be when he was ready. He hung on for so long. He was home, in his own house with you and the family there. What a blessing, a gift you all gave him! He will come and go in spirit with you, but you may not be aware that he is there, in and out. You and the family will go on, but you have got to know you did the best thing you could ever do for him letting him go slowly like this in his own time, in his own way. Its been months since you have told us all and we have been following your posts. Some are folks on dialysis, others are like me whose husbands just started dialysis last Spring. I want to be a stong lady like you when the time comes for my husband, because everyone on dialysis eventualy gets to the point when its time to quit and say enough and family members have to accept it. Your story through all this has been an inspiration and I have been praying for you and the family all along. Bless you sweet lady as you go through the pain of funeral, and all that comes after our loved ones die. You will go on and think of him and in time will feel blessed hes been in your life and you were there when he passed. Its the best gift you could have given him. Sorry he has died and left such a void, but glad he has moved on to the next place we all go. Theres no way to know if he has "gone to Heaven", but its comforting to think he could be there with those he loved who has already gone, and waiting for you to come in your time. Death is not the end, just the beginning in another place.
Sharon
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johnswife, I'm so sorry for your loss. :cuddle;
Please don't blame yourself. John did exactly what John wanted to do, and allowing his suffering to come to an end was the most loving and unselfish thing you could have done. I so admire your strength and devotion, and I don't know if I could have done what you did for him yesterday.
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May John rest in peace.
You and your family will remain in my prayers.
To me it sounds like there were some lovely moments in his last days.
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I am so sorry for your loss. Words can not say how I feel for you and your family, You have all been so very brave. I have admired your strength and love through the last few months. You and your family will be in my prayers. it is time to take care of your self now.
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I'm so sorry to hear of your loss. Don't second guess your decisions. John did what he wanted to and you loved him enough to let him do it. God Bless You! The grieving process is different for each of us and you will go through yours. Jesus knows your pain and will get you through it. He never leaves us or forsakes us. You are a strong woman who has gone through an awful lot. You and your family are in many peoples prayers right now, including mine. :grouphug; :'(
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I echo smokinbeaver words. We all have things we have to deal with not only dialysis (patient or care giver) I commend you on supporting your hubby during his trials and pains. As smokinbeaver said he will be with you and your family when you need support some love some caring, you will feel him there with you. Just stop and let his love come to you. We here all send you our love and support. Please keep coming back and let us know how things are going with you. Love Grumpy
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:grouphug; :pray;
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Unable are the loved to die. For love is immortality. ~Emily Dickinson
:'(
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Idont have my own words at this time but would like to borrow some from bill777bill if i may. God will get you through this and i offer prayers. I will tell you too that your thoughts and feelings and fears are all carried in my heart. I wish you the healing you need and strength to get through this all. You were a pillar through it all, and now you need some help for you. Bless your heart, and God bless you for what you did for hub. :pray;
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I am so sorry the news was so sad.
You did everything you could to support your husband but take no blame for any of this. You did not want him to choose death...that was his decision and you honored it and him every step of the way. That is the epitome of a good spouse. If you had awoken him from his gentle slumber which eased him into death...what would that have accomplished? More suffering and more pain and he wouldn't even have thanked you for it as he wanted to pass on.
Much of him will live on in your children and grandchildren...cherish them and your memories and he will never be far from you.
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:grouphug; :grouphug; :grouphug;
All can give you besides my tears.
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:'( He must have known how hard it would be to leave, because he lasted 4 months longer than anyone expected. That is amazing to me. You honored his wishes and I truly believe you'll have more days in heaven. Sending lots of love and hugs. :grouphug;
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Even tho we all knew his time was growing short, it is still a shock to know he is gone. I am sorry for your loss. I know how you feel, I was a widow too and you think you did things wrong. You did not, and have no regrets for being human either. I had some regrets because at times I felt he was a burden to me, and I am sure you did too. That is only natural and normal, you cant change it, dont worry about it. Down deep you know how much he appreciated you and you know he knew how much you loved him. God bless you and your family, you have a few tough days ahead of you.
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Thinking of you...
May John Rest In Peace...
May God bless and protect you and your family as you grieve!...
Darth...
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I have been thinking of you both a lot lately and its sad to hear this news but he isn't suffering any more now. :'( :grouphug; :grouphug; You did everything that needed to be done, hope the funeral was okay. Get some rest now, you need it.
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So sorry. :'( I wish peace for you and yours and I hope that the two new little souls that have just entered your lives ease the sorrow a bit.
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Thank you all for your kind words and support. It does help and I greatly appreciate it. Its the 7th at 5:53 am and I have to go for his funeral at 10:00. Me and the children and some other family went yesterday and dug his grave by hand. He would have wanted it that way. It was a good day at the cemetery. We all shared great stories of the strongest man I ever knew. Our 2 little girls just jumped right in and wanted to help the whole time. Our oldest daughter is having such a hard time having her new baby and her daddy dying on the same day. She didnt get to say her goodbyes and I am very worried about her for today. Ive been up pretty much since 5:30 when he passed on the 5th. I just cannot sleep or eat. If I close my eyes there are just so many images racing and such pain. I know I have to be strong for these kids and in my heart I know john will help me. But he was our rock and our anchor. How do you live without your best friend you have had for 25 years. I hope he knew how much I really loved him. He was one of the most honest and greatest men I have ever known and ever will know.
It was an honor to be his wife. John I love you soooo much and always will. No matter what I hope you knw that and I would give anything I had just to hear you say LIIIIISA--He would say it in such a way to aggrevate me and laugh. Well gotta get these girls up and head out. Its a 2 hour drive and no sleep for over 30 hours so gotta geta few things done.
thanks and god bless johnswife
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:cuddle;
I can only echo the words of wisdom from others here. You will always miss him, but it is important for you realize that John made this important choice about how he wanted to live his last months. You supported and honored that choice. He left this life the way he wanted to and you were there with him right to the end. I can think of no better way for you to have shown your love for him.
:grouphug;
He will live on in your sweet memories.
Aleta
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I am so sorry, please remember to take care of YOU!!!! We are here for you :grouphug;
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So sorry for your loss. I lost my mother in october. Her body gave out after years of dialysis and complications with diabetes.
It does get easier but there isn't a day that goes by that I don't think of her. Last night I attended the christmas lights ceremony in town and they kept bringing up spending the holiday with your loved ones. Every time they mentioned it, it pulled on my heart strings and i had to hold back tears. Don't be afraid to show emotion at the funeral, you have family there to care for you.
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Johnwife,
My condolences! May God see you and your family through this difficult time.
Please do not be hard on yourself. You were just honoring his wishes. I personally was praying that he would change his mind. I’m so sorry it did not go that way as I feel so sad and have got emotionally involved. :'( As there were some days I’ve got so mad at John (although I didn’t exist to him) and wanted to get your address and go talk to him and kind of make him go back on D. However, I do understand because D can be hard on a person, physically, mentally and emotionally.
Nevertheless, at least he is not in anymore pain and he is no longer suffering. I’m glad he prayed with the priest and hope that he repented so he will be saved. Only God knows. Anyhoo, Johnwife, take it one day at a time as you move forward in life. John will be truly missed talking about.
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I wish I had the words to ease your pain. All I can say is take comfort in knowing you respected his wishes and I know what courage that took and what sacrifices you made . I pray the funeral was a beautiful service so you can remember that and not focus on the horrors of the last few months . Remember his spirit and sense of humour and all the other qualities that you loved in him and encourage your children to do the same . Of course you will miss him but now he is not suffering . I am so sorry for your great loss .
Brenda
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Sending my love and support to you and your family. Wish I had the perfect words.
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Johnswife, I am so so sorry to hear the news. I know you are second-guessing how you handled his passing, but I want to tell you that I think you handled it perfectly. He was suffering so much, that just being there for him and holding him and loving him as he passed was a tremendous gift from you to him. You did exactly the right thing by letting him go, even if it was so painful to you. I've worked in Hospice, and letting someone go, giving them permission to go, is one of the hardest things many people ever have to do. It doesn't mean you failed him, or didn't love him....in fact, it means you loved him enough to let him go on his own terms, in the way he'd chosen. A tremendous thing. You have a tremendous heart. May God be with your family through all of this. I will be keeping you in my prayers. :grouphug;
Anne
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:grouphug; :pray;
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I'm so sorry for your loss, Lisa. May John rest is peace and may you find solace in know that you were his rock in the most dire situation imaginable. Honoring his wishes the way you did required tremendous strength and courage. I believe letting John slip away peacefully was absolutely the right thing to do. John will always be there in your heart and nothing can take that away from you.
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Brings tear. Ur journey was amazing and inspirational.
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I'm still amazed by your family's strength, it is easy to see how much you loved him. I got divorced before I went on dialysis and only have my daughter, it is nice to see a marriage as strong as yours, trust me your husband knew he had an amazing family. RIP :angel;
Larry
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My prayers are with you and your family during this time.
John 14:27-29
Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. You heard me say to you, ‘I am going away, and I will come to you.’ If you loved me, you would have rejoiced, because I am going to the Father, for the Father is greater than I. And now I have told you before it takes place, so that when it does take place you may believe.
Christi
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Johnswife, I am so so sorry to hear the news. I know you are second-guessing how you handled his passing, but I want to tell you that I think you handled it perfectly. He was suffering so much, that just being there for him and holding him and loving him as he passed was a tremendous gift from you to him. You did exactly the right thing by letting him go, even if it was so painful to you. I've worked in Hospice, and letting someone go, giving them permission to go, is one of the hardest things many people ever have to do. It doesn't mean you failed him, or didn't love him....in fact, it means you loved him enough to let him go on his own terms, in the way he'd chosen. A tremendous thing. You have a tremendous heart. May God be with your family through all of this. I will be keeping you in my prayers. :grouphug;
Anne
So sorry Johnswife for your loss! He wouldnt want you to second guess. You were His Angel & a rock for him. You handled it perfectly. Know that he was one very Brave man, cause it wouldnt be easy to leave so many behind, but he did it fearlessly. May he rest in the arms of Jesus Forever!
The post above said it best!
God Bless and please continue to let us know how you are doing. Some of us here, will have to face what you faced one day!
lmunchkin :kickstart;
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Sorry to hearing the news. I know there is no words we can say to make it better. Will continue to keep you and your family in my prayer. Pray God comfort you, give you peace, hold you in His hands and His Love.
- Rose
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Such a difficult time for you - as you say you should expect it, you knew it was coming, but each day he held on and seemingly defied the odds probably made it al a bit unreal, despite the obvious signs, specially the longer it went on.
It was his choice and not your fault. Now he's pain and struggle free and I guess that is one way to look a it.
I hope you can find positives.
best wishes,
richard
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Hello to all--Its my first Christmas without my dear John in 24 years so its a hard day but I have all 6 of our children here with me as well as my new grandaughter!! The other grandaughter of course is still in the hospital. I just miss him terribly and would give almost anything to hear his voice just one more time, get one more kiss. Tell him how much I love him and what he means to me and this family. We love him soooo much.
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It's great your children are there. And a grandchild warms your heart even when you're sad. I'm sure it's hard. It sounds like you're putting one foot in front of the other. Best Christmas wishes to you and your family.
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Thinking of you. I'm glad your family is gathered around. Be kind to yourself. Give yourself as much love and patience as you showed to John. All types of healing take time...
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It hurts just hearing it :( Im so glad your family is there to share and comfort. Good advice already given, i will just share my love and prayers.. :grouphug;
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:grouphug;
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:grouphug;
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Johnswife I haven't been to the IHD site in a long time. I just read your whole thread here and my heart goes out to you and your family. Thank you for sharing this end of life story with us. You are a wonderfully strong woman and in a strange way it's wonderful you had grandkidlets the day he passed. RIP John
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There is hope. My husband had similar bouts of the same thing. He is also blind in his left eye due to intercranial pressure. He has had I know he feels overwhelm but just encouraging him. He is in alot of pain but life is worth living and there are good things to come.
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I haven't been on the site in so long! I'm so sorry for your loss. Please don't think you should have woken him up. I really don't think it would have helped. That breathing is one of the last signs of dying. My dad breathed like that for hours the night he died. He went peacefully in his sleep--is there a better way to go? Poor John is at rest, and he was alive for the birth of his new grandbabies. I'm so sorry for your loss, and the toll it took on your family. I am glad John's no longer suffering, and hope you all can move on to find new joy in your family, and honor John's memory and strength.
God bless you! You will still be in our thoughts, I'm sure. It is hard to lose your lifemate, but you are obviously very tough yourself, and very capable of leading your family. As my grandma said, some days you feel fine, and others are awful, but over time the grief gets easier to bear. If it doesn't, please see a psychiatrist! Sometimes our brains get stuck in a bit of a rut,and needs push out.
Take care! So sorry, again.
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You are on y mind and I wanted you to know. Sending hugs to you.
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So sorry to hear about this...
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:grouphug;
Hello to everyone. Sorry for the long delay. I just wanted to give you guys an update. First I got a great job now, kids are doing pretty good with the exception of Katy who is still struggling but I'm working in getting her help. I am doing much better and while I think of him everyday I now smile when I think of him and have so many good memories. I know he's not hurting anymore and in a much better place. I know he's smiling down and watching over me and our kids. I hope you are all well and I love you all and wish you all peace, happiness and health in this new year. I'm going to be going for my GED soon so wish me luck. I will check in time to time and think of you all often.
God Bless you all
Lisa -still Johnswife in my heart
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Thank you for the update. :cuddle;
Hold onto those happy memories. They do keep John alive in your heart. I'm so glad that you have found a job you like and are healing. It takes time.
:grouphug; :grouphug;
Aleta
:grouphug;
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Yes, thank you for the update. Good to hear that things are moving in the right direction and Katy will come around in time. Bless you and hang on to the smiles. Time will continue to heal :grouphug;
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Awe.... thanks for updating Lisa (JW). You will always have those memories. They are what will help with the loss. John wants you to go on now. Be with the one's you love and enjoy their company. He knows you sacrificed alot, now it is your time to shine!!!!
The new job sounds like a brand new adventure. Go with it and embrace it. You have alot to give still.
Love & think of you often. Hold those kids close & thight!
God Bless,
lmunchkin :kickstart;
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Hi Lisa , Happy to hear you are doing OK and Good Luck with the new job .
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HOw is JOhn doing? Please let us know. I am in similar situation with my husband.
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christijo
John died quite a few weeks ago.
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Johnswife
I just finished reading through this thread from first to last (and went through several tissues in the process ;) ). My heart goes out to you and your family. This may Asbe an insensitive thing to ask, I'm not sure, but have you thought of putting down your experiences with John in his last few months on paper? I think it would be a great story, and would be inspirational to those who are in your shoes, and must cope with the decision that a loved one has made to stop treatment. As a writer (though all I've written lately is half a poem and a synopsis for a short story that will most likely never see the light of day), I see stories, and this looks like one that would do good for a lot of people. This story is yours to tell, if you choose to.
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Thinking of you
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:waving; Hi Lisa,
Glad you're working and the family is doing ok.
Best wishes always!
:flower;
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I havent been on this in sooo long. How is John?
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John passed away a few months ago.
Go back and read the thread.
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:grouphug;
Hello to everyone. Sorry for the long delay. I just wanted to give you guys an update. First I got a great job now, kids are doing pretty good with the exception of Katy who is still struggling but I'm working in getting her help. I am doing much better and while I think of him everyday I now smile when I think of him and have so many good memories. I know he's not hurting anymore and in a much better place. I know he's smiling down and watching over me and our kids. I hope you are all well and I love you all and wish you all peace, happiness and health in this new year. I'm going to be going for my GED soon so wish me luck. I will check in time to time and think of you all often.
God Bless you all
Lisa -still Johnswife in my heart
Johnswife I hope you are still reading the posts here .... I want to express my sincerest condolences to you, your daughters and your entire family. I want to tell you that you are incredible! You stuck by John till he left this world for the next and that took guts, strength, bravery and love. We know John's strength and perseverance is legendary but you have proven yourself an incredible person also. I will pray for John, you and your family and i want you to know I feel your pain and shed tears for you all right now. Stay strong, be well and take care :grouphug;
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:flower;
Hello to all of you!! I just wanted to give you all the updates in my life in the past 5-6 months. First off I love all of you and I appreciate that you were all there for me in my time of need. I am happy to say I am remarried to a wonderful amazing man of God who I adore and has made my life so wonderful. My children love him as well. I just had another grandchild born last week. A little boy names Jordan glen turner. I know John is in a better place and so happy and healthy at last. I am thankful God gave me the most wonderful loving man that I could ever imagine. So life is very good these days and I praise God for all of his goodness!! I love you all and hope you are all well.
Thank you again
Lisa ---now Marty's loving wife but will always be johns wife as I was there till the end.
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Oh, Lisa,
This was a wonderful post to read. I am filled with gladness that you have found love and life again. And John would have wanted you to continue living this full and happy life. In a way, you honor him by bringing love into your life again. And there is nothing better than grandbabies! :2thumbsup;
:cuddle;
Aleta
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Congrats! This is wonderful news!
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Wonderful news indeed! :grouphug;
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:flower; Best wishes to you and your family - you deserve some joy! :waving;
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Ahhhhh, this has made my day. Thanks so much for sharing this with us!
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All happiness to you! :flower;
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:cheer: :flower; That's great to hear Lisa! So happy to hear of your happiness.
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God bless you as you continue on your path in life.
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inspiring to hear :) So happy for your happiness, and wish you all the best :flower; :cuddle;
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So happy for you and wishing you peace, joy, happiness and tranquility. You deserve it.
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I read through this entire thread for the first time today and all I have to say is I'm so sorry for your loss. I'm actually crying as I write this. You remind me so much of my wife, she never gives up on me and supports all my decisions and I know she would be there until the very end if I were going through what John went through. I was amazed he held on for so long and my heart broke when you posted he died but I was so happy his suffering is over. The nights always seem to be the worst for me with this disease and just last night my wife offered to rub my back when I was up with anxiety and couldn't sleep. My wife is so selfless she will wake up in the middle of the night to take care of me even when she has to get up at 6am to get ready for work. I'll admit sometimes I take all that for granted, not because I don't appreciate what she does, but because sometimes I just get too caught up and forget to tell her how much she means to me and all she does. I will be giving her a huge hug tonight, maybe even try to do something nice for her like make her dinner and clean the house. All the dialysis wives out there, you are God's angels sent from heaven.
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I just read your post about appreciating your wife. I think it would be awesome if you did something for her but as wives we are honored to care for our spouses in sickness and health! You husbands are a part of us and when you hurt we hurt. John went the way he wanted to go and it was very peacefull. I know he was not in any pain and just went in his sleep because I watched him drift away. I still wonder sometimes if I should have made him fight harder but John did what he wanted and as his wife I always stood by his decisions. I hope and pray you and your wife have many many more years to share on this earth and just know you are both blessed to have each other! God bless you both!!!
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Thank you so much for your kind words. Your husband sounded like a really good man and I admire him for standing up for himself and hanging on so long. I wish you and your family the best. I know John will remain in your hearts forever.
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:grouphug;
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Congratulations on your recent marriage! Such good news to hear! God bless you and your family :)
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Just praying for you both.