I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Marley on October 22, 2008, 01:32:08 AM
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Good morning all (VERY early)
I'm going to start posting in this section since I'm a caregiver like y'all.
(see "other medical conditions for a background) I could use a buddy. :kickstart;
My man is still in the hospital dealing with shortness of breath. They are dialysing him every day except for Sunday's and he is holding his own. The neph, who we've been seeing for a few years now and have a good relationship with, told us that Mikey's heart is too weak to support the new valve, the tear is in his heart wall where they had sewn the new valve in place. The hole is making the blood go into his lungs, which is causing the breathing problems and in his opinion, no heart surgeon would touch his heart right now. Pretty grim news. So Mike had decided to stay in the hospital for as long as they keep him and once he got home, he wanted to stop dialysis. In other words, he was going to come home to die....not acceptable to me!!
Then his heart surgeon was in on Monday morning and said to him he wants him to do dialysis every day for 2-3 months and then he will go back in and take another look at his heart and see if he would be able to do the surgery to fix the hole. He talked about sewing on a piece of cadaver so the stitches will have a better "anchor"---this is what I got out of the conversation. The surgeon came in VERY early on Monday morning and I didn't get to hear, or ask any questions.
Here is our issue: Our trusted neph tells us how weak his heart is and that there is a lot of calcification around the valve, which is why it tore open, basically his heart is too weak and "this is probably it". We've known this neph a long time and Mike trusts him. Then comes the surgeon who says dialysis every day and "well take another look". Now my man is wondering if the surgeon is really prepared to do another surgery or is he humoring him and giving us false hope? Know what I mean?
I'm all for the holding out hope for surgery, it sure made a difference in my man's attitude yesterday!! It's a terrible thing to take away one's hopes and shoot a person down like that.
I know I'm a strong person, but sometimes the walls start closing in on me and I could just scream!! I told him the other day I would feel a whole lot better if I could just kick something.......already kicked the &#%$ out of my other harddrive, haha, didn't do any good eiether and I hurt my toe.....but this man of mine is such a strong force in my life and a lot of people love him too. He's always looked out for me, always tells me he loves me every day and just totally fulfills me and makes me a better person for being with him all these years, I know I'm a lot more knowledgeable now. (he should have been a history teacher, he has always told me stories and events and has a way of making history SO interesting)
Life is much more happy and fun with him around. But his poor body is really struggling and we both thought his heart was healing and mending---up until last week.
I don't know how long he will be in the hospital and I don't really think he will stop dialysis once he comes home. I don't think he's ready to give up yet, thank You Lord!!! :) I'm going to ask his doc to order him a hospital bed for home. Like most people on dialysis, he's got horrible insomnia and actually sleeps a lot better in the hospital, so I'm thinking (hoping) it's the bed---he can sleep with his head raised---makes breathing a whole lot easier.
It's late and I better at least try to get some sleep---talk about insomnia---that's where I'm at tonite. If you've read this far, thanks--hope I didn't ramble too bad.
Marley
:guitar:
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Marley :grouphug; :grouphug; We will all hope and pray that after a couple of months, his heart will be ready for surgery. HOPE--- one of the best words in our language. Sending you lots of love and hope :cuddle; :cuddle;
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Marley,
:grouphug; ...that's what I'm thinking about you now. I hear you and feel your pain. I've been through similar, and it's hard. I'd hold out for the surgery -- some hope is better than none. Miracles happen every day, and maybe a couple of months of good dialysis will allow Mike's heart to be strong enough for surgery. Luckily for me, Marvin has never talked about wanting to stop dialysis (though I have thought many, many, many times, "If it were I who was going through everything Marvin's going through, I'd give up!") My Marvin just refuses to quit -- God love him! If he ever said he wanted to stop, I don't know what I'd do. One part of me would scream, "NO NO NO," but another part of me would say, "How much more can this man take? Do I want him to keep going just for me? Am I being selfish?"
Yes, yes, yes...ask the doc for a prescription (why it takes a prescription, I don't know) for a hospital bed. We have one (haven't had to use it for a long while), a wheelchair, a walker, and lots of handicapped "rails" around the house (especially in the bathroom). Anything that we can get to make Marvin's mobility and overall independence easier, I insist on getting. Our hospital bed was provided through a home health agency (with a doctor's prescription). It was paid for through Marvin's insurance. Marvin, however, doesn't like to use any of these "aids" because he wants to do everything for himself.
Marley, a caregiver's role is an exceptionally difficult one. Be brave. Be strong. Hang in there! It seems to me that my caregiving stamina has been tested many, many times. It is often late at night when it hits me and hits me with how overwhelming it can sometimes be. Usually, I feel better about it in the morning when the day breaks and the sun shines again. I believe that a part of my purpose in life (a big, big part) is to be here for Marvin. I think God gave me to him because He knew that Marvin would need me. That helps me cope ... and sometimes, that's the only thing that keeps me hanging on.
Love you...thinking about you...praying for you and for Mike...hoping that tomorrow will be better.
petey (Marsha)
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What a really nice post Petey. Marvin and Mikey are both very lucky men to have you two women on their sides. I'm sending hugs Marley. :grouphug; and flowers too. :flower; :flower;
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petey and marla...two very strong women. Hugs to you all.
A friend of mine in TN had a 9 bypass in 1990. Since 2000 he has had 10 percent heart function. In 2001 a surgeon asked to try a new procedure which was using a laser to punch holes in the heart walls to increase the usage. After much prayer, they okayed it. Dr went in, did one hit and blew a 4 inch hole in the heart. They patched up what they could and called the family. Read all the dates everyone. This man will be 78 in January, still living at home, a little slower than he used to, rests more, still the biggest tease in TN. He now thinks he might have to start dialysis. Used to be a police officer in Chicago and last year went to the firing range and passed his test to carry his weopon as a backup to other officers. There are miracles every day.
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Petey---what a super nice post!! You talk the same way I feel, like God made Mikey for me to take care of and to love him. He's been through so much and I've thought the same thoughts you have, am I being selfish by wanting him to stay with me even though he feels miserable?? I've told him that if he got to the point where he wanted to stop dialysis, I would support his wishes. I won't like it, but I promised him. Since this new hole in his heart and the terrible shortness of breath he's dealing with now, he knows he can stop dialysis---we both agree that's a better way to go than not being able to breathe! So he has that option.
I picked up some soft tacos before going to the hospital so Mikey and I could eat dinner together. He said he felt alright but he looked pretty pale to me. Right after we ate, his nurse came in with his pain pills and shot--within 10 minutes, Mikey was drifting on a big puffy cloud with his eyes at half mast....comfortably numb. :) His doctor ordered IV pain meds for his breakthrough pain and it's made a big difference, now he can get some better rest. He waited until after we ate dinner to tell me his neph said he could go home Friday after dialysis!! Then he gave me one of those Mikey grins that just melts my heart. So tomorrow will be one buisy day for me. I have a list for his doc to help me out with and one of them will be to write a script for a hospital bed. I know he'll get much better sleep in one. Hey, do those beds come in a wide size?
I'm really missing laying down with him and cuddling--if his bed was wide enough....:) Get rid of my couch and make room for my new one from my Aunt then have the hospital bed brought here.
Soooo, I'm going to make his favorite dinners, get all "prettied up" and get him into his bed....hmmm, thoughts have drifted. Stupid neuropathy makes walking very hard on him, but he's got to get some exercise!! I know a few and he can sit in a chair while he does them, some arm ones too. I'll "work out" with him so it won't be so boring--nobody likes working out alone and once we get into the habit of walking, we'll look forward to them---that's the rumor going around anyway. There I go rambling again!! :oops;
I can hardly wait for him to be home again!! This house is so empty feeling when he's not here. When we're living our "normal" and things are running smoothly, I love the MY time I have while he's at dialysis. I don't have to cook anything unless I'm hungry or do the things I do for him every day. When he's in the hospital and I know they're taking good care of him, (and he's not critical) I breathe a sigh of relief because I can rest........sometimes I feel guilty for feeling this "whew" feeling when I'm here alone and vegging on the couch, but I know I need this time to myself to recupperate from this sometimes hectic life we live.
G-Ma, what an inspiration your friend is--9 bypasses?? I've never heard of anyone getting so many and after surviving a 4" hole punched in his heart, he is a true miracle!! .......I believe!!
Have a great night everyone and THANK YOU for all your support and prayers!!
:guitar:
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Marley..you will do fine. Do not feel guilty about your whew moments...you need them, I have been there and I think cuddling is probably the best medicine for both of you.
Ann
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Dear Marley and Marsha, You are both amazing gifts to this world. I am always inspired by couples that "make it work" no matter what. Your love for your husbands shines through with every post. :grouphug; Linda
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Marley and Marsha :grouphug;. My caregiving has eased up somewhat since transplant and I want both of you to know that we are all walking with you, every step of the way. :cuddle;
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Marley, can't your social worker get some of the things(bed) ordered for you? You have enough on your plate thinking about getting "prettie" for his return. :grouphug; :grouphug;
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Marley,
I sometimes (no, actually, almost always) feel guilty when I have "whew" time. I know I shouldn't because I NEED that hour, that 30 minutes, etc., to let my body unwind a little and charge back up -- and you shouldn't feel guilty, either. But, it's easier said than done. What I do is, during a "whew" break, try to convince myself that this time and this physical and emotional rest will make me able to help Marvin more later. Sometimes I actually believe myself, and sometimes I don't.
The one thing that Marvin and I both hate about a hospital bed is that we don't get to sleep together -- no sexual thoughts there -- just snuggling next to him, touching his arm, etc. is what I miss when he's in a hospital bed. One time, he had to spend almost a month sleeping in the hospital bed in the den. The first few nights, I slept on the floor beside him. Then, a spent the next few nights sleeping on the couch across the room from him. Finally, I had to give up and go back to our bed (this body of mine isn't what it used to be). I gave him a bell and whistle to "call" me if he needed me, but I still found myself getting up every hour to check on him. Those were not restful nights for me. It was soooooo good to get him back in our bed! (Those hospital beds aren't wide enough for both of us -- we're both "fluffy" people and he had a wound vac on, so it wouldn't work to try to crawl in there with him.) But...a hospital bed in the den was A WHOLE LOT better than a hospital bed in a hospital. Keep thinking that!
I have found that the first week Marvin's home after an extended stay in the hospital is the most tiring for me. We have to adjust to his being home again, we have lots of visitors coming in, there's extra "work" from our normal routine, and he needs me to do a lot more for him. Make a sign that says, "Mike's resting. Please do not disturb" and hang it on your door when he -- or you -- need the time just to be alone or when you just don't feel like talking to or looking at anybody by Mike. Those who truly love you and care about you will understand the sign. Those who don't understand it don't matter anyway.
Get some extra rest tonight so when you bring him home tomorrow you'll be ready to go, too! I'm so happy for you :yahoo; . It's the best feeling in the world to have your sweetie in the same house with you again.
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Marley, petey summed up things that I have also felt. Len spent 6 months to the day in the hospital in 2001 and we had a hospital bed brought into our living room. I tried sleeping on the couch because Len had a small bowel feeding tube and was on TPN and the alarms would constantly go off during the night. After about 4 weeks, I couldn't do it anymore, I was exhausted from lack of sleep. My daughter got me a baby monitor that I sat up on the bedside tray with Len and I slept with the other half. I so missed just hearing him breathe or even snoring next to me. My home looked like a hospital, dialysis machine and RO in spare bedroom and hospital bed, walker, wheelchair in livingroom, shower chair and rails in the bathroom and handicap ramp out front. This went on for almost 3 years and many night I cried myself to sleep. Please take petey's advise and rest at every opportunity you get and accept help from others when it is offered. Caregivers need lots of rest. Enjoy having Mikey at home and take one day or one hour at a time. We are here if you need help. :cuddle;
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Add Kathy and Amy to my list, too! :grouphug;
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Just caught up with this post and wanted to send love to both of you :grouphug;. Don't give up HOPE, sometimes it is all we have but sometimes it is all we need to keep us going through the bad times. I hope good times are not far away for you.
:cuddle;
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How long can a person live with a hole in his heart and leaky valves?? I read his echo results and daaaamn, I don't know how he keeps going!! He's regurgitating blood from his mitral valve, (where the hole is) he's got Aortic regurg. AND his tricuspid valve shows "moderate to severe regurgitation", so that's three valves that are leaking!! and What the hell is ('seen throughout both lungs') "hazy airspace disease"??? His chest x-ray didn't sound so good eiether and along with this new thing, it showed diffuse pulmonary edema--oh yea,--and his heart is enlarged. My poor baby!!! I had called the dialysis clinic yesterday to check on him and his nurse and I were talking. She told me he was really out of it today--he has been off and on--and she told me that with his heart so compromised, his brain isn't getting enough oxygen and that's why he will sometimes talk and not make any sense. I was scared he was getting some type of dementia!!
Oh man, he looks so sad right now, he's lost weight and I hadn't noticed until today with him in the bed and shorts on, his legs are so skinny and I can feel his shoulder bones when I hug him. He's really scaring me this time, I'm hoping and praying he can make it back from the edge one more time.
He slept all day today and I had to wake him up to eat and then he'd go right back to sleep. He can hardly take a few steps without getting winded. He's been wanting to go to our fish store to get a new pump for his tank and asked to go after I picked him up after dialysis on Saturday. We got inside, found the pump and a few new fish and he got very pale at the check out counter. He went for the front door but collapsed in front of it and was breathing too fast. The owner of the store helped me get him into the car and as soon as we got home and he put on his oxygen, he started felling better. Five minutes later he was asleep. He scared the krap out of me, but I held it together pretty good until after we were home and I got his oxygen on him, then I started shaking like a leaf in the wind.
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Oh Marley, I am so sorry for everything you are going through. My Len has mitral valve problems and pulmonary problems also. You need to tell his doctor to prescribe a portable oxygen system. Len had one that was the size of a purse and carried it everywhere, at night we hooked him up to the one that plugged into the wall and made oxygen from room air. I hope you are getting some rest and taking care of yourself. Please know that we keep you and Mikey in our thoughts and prayers, always. :cuddle;
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:grouphug;
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Hugs to you both.
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Marley, I wish you lived close I'd run and give you a great big :grouphug; It's so hard to watch someone we love get so sick. :grouphug; :grouphug; :grouphug;
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I wish Marley lived close to me, too. I'd be on your doorstep right now, Marley, with a hug and a shoulder to lean on. I've got you and Mikey in my thoughts and prayers. I'm praying God will make Mikey better and will give you strength.
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Marley,
I know how very difficult it is. It's unbearable to see your true love so sick and be so afraid to lose him.
How to cope? I don't know. We just do. That's all. Every moment is precious, even the whew times.
:cuddle;
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:grouphug; hope things get easier.
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Oh Marley, Mikey is fighting so hard. And you must be exhausted from all you are doing and from the worry. I'll keep praying for both of you. Sending you both love and good wishes :cuddle; :cuddle;
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Marley, :waving; doing some research this morning on other issues, I read some of Len's paperwork and it says, "idiopathic pulmonary fibrosis". They do chest xrays on him every 3 months to see what changes are happening. Was Mikey on a ventilator for a long length of time by any chance? Len was for about 6 months straight and then probably 5 or 6 times for a couple of days here and there. From what I have read, this tears the lungs up (it is something when they use it to save their lives :banghead;).
Len has the mitral valve leak also and in 2002 the cardiologist did the heart cath and during the procedure, he snaked a device called a duct occluder, it's like an umbrella, it is suppose to close the leak around the mitral valve. Len was awake through the whole procedure and watch what the doctor was doing a television monitor.
I thought I would just mention the stuff I am reading about and maybe it will help you with something. I have been at this since about 3 am so I'll be ready for a nap later. :cuddle;
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Things got harder around here since my last post. Mikey has continued to get weaker and more confused. (This confusion has been going on for months now but mostly has been "on and off", never lasts this long!) His aide was here Thursday and she could really tell a big difference in his behavior. He fell as we were getting him ready for a shower and we both thought it oculd have been a seizure, maybe. I called paramedics and they did a CT in the ER, which came back negative, so now his docs are stumped. Friday was a nothing day as well as Sat and Sun---seems like everything shuts down in hospitals during the weekend!! VERY FRUSTRATING!!! I'll be talking to his doc in the morning to ask about having a neurologist seeing him. I just don't accept "I don't know why he's doing this", so call in another doctor!!
W&W--Before he came home from the hospital the last time, the home oxygen was set up and so was the hospital bed, the medical supply place brought them both at the same time. (someone's got they're %#$@ together!) Also, last month when he was in ICU, he was on the ventilator for only 2-3 days before they extibated him, thanks for asking. He also has Cardiomyopathy, which makes his heart weaker so I'm thinking the option for a 'duct occluder' would be out. That's the problem with his new valve, his heart isn't holding it together good enough because it's so weak. I'm living one day at a time.......
You guys are awesome and I want you all to know how much I appreciate your support and friendship. :thx;
Marley
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:grouphug; :cuddle; :grouphug;
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Marley, I am so sorry all of this is going on with Mikey. Plese know that you both are in my heart and prayers.
Love, Mimi
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I pray Mikey soon gets better, and you have some peace and rest in your life. God Bless :grouphug;
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Marley, :cuddle; please know that you and Mikey and in my thoughts and prayers. :grouphug;
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:grouphug; Wish we could do more :cuddle;
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Thinking of you and Mikey and saying prayers that Mikey starts to get stronger. :grouphug;
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:grouphug;
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:grouphug;
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Keep taking it one day at a time, Marley.
How's Mikey today? You two have been on my mind a lot lately.
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Well, today was not so good and I feel like I walked through a dream from around 2:00 on and I still feel pretty numb. Mikey's labs came back from yesterday--liver panel--and we now have an answer as to why he's not himself, his liver is in horrible shape and throwing out enzymes--he's developing small blood clots from his liver, I don't understand that yet, but I haven't been on my medical encyclopedia site yet eiether. And he mentioned "DIC" twice and just said "it's very bad". He told us that his system is shutting down and said it was time for paleative care and hospice, one or the other or both..... ??.....can't remember. I met the doctor who does this paleative care, we sat down and talked about what Mike would want to do and I know (and what I want to do)he would want to stop dialysis, so it was up to me to say yes or no---I did what I thought my man would want if he could talk right now and I'm praying I said the right thing.
Last month shortly after we found out his new valve was leaking, we talked about the possibility of him dying. He brought up how the dialysis tech told him "it's an easy way to go", when someone stops they're treatment and it might feel like choking to death with his CHF. If he had a choice; and he did, he told me he would stop dialysis. OMG, I hope I'm doing what he wants me to do!!! His poor heart has just had it and there is no way of fixing it. He is "not all there" right now and one of his biggest worries when we first found out about his kidneys, his first reaction was that he didn't want to loose his mind. If he was aware of how he is acting and talking, he would be humilliated and so embarassed, he would be telling every nurse he saw how sorry he was and hope he didn't cause problems!! He has been in this state of confusion and hallucinating for a while now, but consistently since Thursday. I chose to stop dialysis.
One thing he never did was to sign that advanced directive and I'm a little worried about that. Can anyone tell me what I should expect? I have already told (and his docs know this) everyone that he does NOT want to be kept alive on a machine, his doctor has known that since the beginning.
I've been holding out hope that Mikey would "snap out of it" like he's done for years. Today my hopes were crushed down flat and now I've got to get things ready to bring him home so he can go in his own home, I promised him he wouldn't die in a hospital and that I would bring him home when we got to that point. We're at that point and now I'm wondering how the hell I'm going to get through this!! We have 10 grandkids; 8 of which live in our town and the oldest one is 9. How the hell do you tell a child they're Grandpa is gone? THIS SUCKS!!!!!!!
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Dear Marley, I am sitting here in tears. You and Mikey have fought long and hard. We have all been praying for him to rally one more time. I don't have the words to tell you how much I am hurting for you and your family. I will continue to keep you all in my prayers. We are all here for you, surrounding you with our love and support. I pray God will hold you in the palm of His hand while you go through the next few days and weeks. And angels will lift you with their wings and stand beside you. Sending love and prayers :cuddle; :cuddle;
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Oh Marley, I am so sad to read this. You have done the right thing, you know it is what Mikey would have said if he could. Four years ago I watched my husband die, I could not bring him home as he was too ill to move and the cancer that had spread to his bones made every movement painful despite the morphine. I also didn't feel it would be good for my boys to live through it all. And finally I could not get any help so I would have had to look after him 24/7 with only 1 visit a day from a nurse. I just could not do it. I knew Barry really would have wanted to die in his own bed if he could but his mind had also gone by then and he didn't know where he was. He too would have been embarrassed,like Mikey, but because his mind had gone mercifully he didn't know he was doing it. It is hard for us to bear but I believe it makes it easier for them if they do not know what they are doing or saying. We surrounded him with love and made sure he knew he was never alone, I was able to stay on a reclining chair in his room over night and that's what we did. At the end he just passed peacefully and I have no regrets about what I did. I hope you can find the same peace and quiet for yourself and Mikey, may God bless both of you and make this time as gentle as possible for you both. You can and will get through this, it will be hard but you can do it. Sending you lots of love :cuddle;
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Marley, my heart is broken for you. :'( I'm sitting here in tears and wishing there was something I could do. Please know that you, Mikey and your entire family are in my thoughts and prayers. Please know that we are all there with you to give you strength. :grouphug;
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Marley, this is so devastating. We have been hoping and praying with you all along the way. We have been quite impressed with your strength and are so sorry that Mike doesn't have his miracle (yet).
You asked about Mike not having signed an advanced directive - this is a good thing because it leaves all of the decisions in the hands of someone who loves him - you, his spouse. By law in our state and most likely yours too, as the spouse all decisions become yours in the event of mental incapacity. You know Mike best and love him dearly. Be secure that you will make all the right decisions for him.
Hospice is an organization that will help, in our experience free of charge except for whatever they can get from insurance. They will quickly get you whatever you need to bring him home - a hospital bed, oxygen, pain meds, and will provide home visits by nurses, and people to help with personal care. They will make sure that Mike does not suffer. They'll be there for you too.
We are here for you too, hoping and praying that Mike gets his miracle.
:grouphug;
Alene and Rolando
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Marly :cuddle; :cuddle; to you. This is so sad but I am sure you are doing the right thing by following his wishes. Look to your family and friends for lots of support.
:grouphug;
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Dear Marley, I read your post and I can feel the love that you have for Mikey and the courage it takes for you to make the decisions that he would want you to make. You are a strong person and I believe that your inner strength will help you to get through this very difficult time. I will continue to hold you and your dear Mikey in my thoughts and prayers. :grouphug;
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Oh Marley, you two have been through so much together and from your very first post here your incredible love for Mike has been abundantly clear and frankly inspirational. I think your heart knows exactly which decisions Mike would make for himself, were he able to, and you also know that he literally trusts you with his life and with its end. I hope you don't second guess yourself too much. You are lucky to have had each other's love and Mike is blessed to have you there for him now.
Please know how much we care about both of you. :grouphug; :cuddle; :grouphug;
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Marley,
I wish there was something I could say or do at this time to ease some of the pain and enormous stress you're feeling right now. Unfortunately, I have no words that are adequate to help you. You should do what you feel is right for Mikey and what Mikey would want you to do for him. The choices that you'll have make will be difficult, but use your inner strength, your love for Mikey, and you "gut feelings" -- and I know you will make all the right decisions. My prayers are with you and Mikey.
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Dear Marley - I think all you can do for the grandkids is be an example of how we take care of our loved ones when they are at the end of their lives - giving Mike good care and comfort and dignity. I am so sorry and I wish things could be different. I admire your strength and devotion. Take care.
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Marley for sure you are making the right decisions. There is no one who knows him and loves him like you do. You would not let anyone else make these decisions. You are traveling a rough
road, but strength will come to you through family, friends, and the precious Son of God. We
continue to walk forward and make decisions during these rough times because we have to, there
is no other choice. Hang onto God's hand and He will see you through. You and Mikey are in my
heart and prayers. Please remember we all love you.
Love, Mimi
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Marley
My heart is just breaking for you, you guys have been through so much. I wish there was something to say to bring you comfort, just know that we are all here for you. :grouphug; :grouphug; :grouphug;
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Hey friends
I spent most of yesterday getting things ready so I can get Mike home. I had slept right through my alarm clock and around 9:30 the hospice nurse called and said she was down at the hospital. I met her there and the ambulance was already there too, wrong day to oversleep!! can't believe I did that. She told me the pain patch they put on him yesterday has kicked in and he is in a deep sleep. He didn't even budge when the EMT's wheeled him in and got him into bed. He hasn't budged since eiether.
Oh man, he's in a comatose state right now and has only opened his eyes once and he didn't see me. He was talking a little just two days ago!! He's in the hospital bed with clean sheet and the quilt our Auntie made us last year and is all tucked in, if only that damn bed was a little bit wider, I'd crawl in it with him!! Too bad I'm so "fluffy".
I'm holding it together pretty good right now, my son doesn't like it if I cry in front of Mike. He didn't really understand how really close he is, he sprayed air cleaner becauese I had a cigarette earlier in the house. He said I shouldn't smoke in front of him because he will want one too--I tried telling him he will not want a smoke, but I would smoke outside. My poor son, he and Mike are very close and I know this is extremly hard for him to accept. Both of us are used to seeing him get very sick but always come back and it's obvious he isn't going to do that this time.
Thank you all for thinking about us and the prayers
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Still thinking of you, still so very sad but I am so glad you have managed to get Mikey home. In the times to come you will have the comfort of knowing that you did eactly what he would have wanted if he could tell you.
God bless you all :cuddle;
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Marley, I'm glad you got Mikey home. I feel sure that that's where he would want to be. You are a strong and brave woman, and my heart goes out to you at this time.
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:cuddle; Marley. You and your family continue to be in my thoughts and prayers. :grouphug;
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:grouphug;
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Marley I'm so glad you got Mikey home. xoxoxoxo :grouphug; :grouphug;
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Marley, Bless you heart and dear Mike's. This will be the hardest time you have ever gone through. You have been such a rock during this; never complaining, always just worried about Mike. The love you share is so evident. There are not enough or the right words to say how I feel right now. I pray you can feel all our loving support surrounding you during this. We have all been praying for Mike to make it through each step these past few months; now I will pray for strength for you and peace for Mike. I am glad Mike is home and your family is together. :grouphug; :grouphug;
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Marley and Mikey...my heart is breaking for you...6 years ago in Sept George and I went through this....his Dr in TN assured me that Dr himself would take any questions about lack of Advanced Directive when his system started shutting down so fast..the Dr knew what George wanted and followed his wishes..said I just needed to be beside him all the way which I and my sons were. God bless that Dr and my employer at the time. You just need to follow your heart, what you and Mikey need and don't worry about anything else. We are all here with you and for you.
Ann
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My heart is breaking for you. I am glad you had opportunity to bring him home. Love and hugs to you!
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:grouphug; I pray for you and your family. Mikey can tell that he is home, he can feel you.
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Marley, my heart is also breaking for you. You're both surrounded by love.
:grouphug;
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I know how hard this is on you Marley, but I'm so glad he has you in his life and that you are by his side during this transition. We are with you and Mikey in prayer and in thought. :grouphug;
Sluff
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Thinking of you both. :grouphug;
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Keeping you both in my thoughts and prayers and sending love :grouphug; :grouphug;
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:grouphug; :grouphug;
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:flower; :flower; :flower; :flower; :flower;
My thoughts and wishes to you both
:grouphug; :grouphug; :grouphug;
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Thinking of you and Mikey.
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Still holding you both in my thoughts :cuddle;
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Marley, Mike
:grouphug;
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:cuddle; Marley, Thinking about you and Mikey. :grouphug;
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thinking of you two...
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:grouphug;
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Is there an update? Does anyone know what is happening?
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My last post was Saturday--Mike spent most of the day sleeping and came around a little bit that night. He kept wanting to sit up in his bed so I was holding him up when our son came in, he was so surprised to see Mike sitting up and looking right at him, he went right over to him and Mike said; "there's my friend, my son" and reached up for a hug, I'll never forget it. Then Sunday morning he woke up around 11:00 and stayed awake and pretty aware; I called everyone and we all got to visit with him. Mom told me this morning that he gave her the sweetest smile she's ever seen on his face, wonder what they were talking about!! He was awake long enough to tell me he loved me and the kids--and whtever elst he wanted to say in private with my dad. They're pretty tight too and used to go fishing 3 times a week--all seasons.
Sunday was not so good and he slept most of the time (with his eyes open!) and when he was awake, he was confused and kept wanting to sit up. He was so weak he couldn't help me hold him up and my back was loosing it, so I would just calmly tell him he needs to stay in his bed or he will fall down. The rest of Sunday I just kept telling him how much I will miss him but that it's alright for him to go, I will take care of our kids and grandkids, and even though I'll miss him, I will be alright. I fell asleep on the couch around 5:00 Monday morning and when I woke up around 8:30, my baby was gone.
Instead of freaking out, I just went and made a pot of coffee, sat down and waited for it to be done and had a cup--strange--but I just was not ready to deal, but eventually I did. I woke up our son so we could have some alone time before people started coming and the first person I called was my mama, funny how we turn into little girls again sometimes. I waited a while before calling the hospice nurse and when I did, I told her I wasn't ready to let him go yet and to wait before calling the funeral chapel. I tried bathing him but just ended up cleaning some parts so I could keep his dignity intact. I feel like I did everything I could the way he wanted things
Now I am just plain exhausted and can't keep a thought in my head! Mom went with me to the funeral parlor and we got that taken care of and now I've got lots of paperwork to fill out to get some help. Plus people to call and people to try and find.
OMG, this hurts so damn bad and I can't believe he's really gone. The livingroom looks huge with all the equipment gone but the biggest hole is in my heart. He was so much the good part of my life and I really don't know what I'm gonna do without him. I feel very pissed and almost like I'm in shock, I keep getting these "butterflies" in my stomach and if I hear "hang in there" one more time........ One of the biggest things I dread is seeing our grandkids sweet faces after they know he's gone, especially the oldest one.
Thank you everyone so much for your thoughts, hugs and prayers. I really felt blessed on Sunday when he woke up for a while and thank God for those few precious hours. I know I'll "get through this" but OMG, it hurts so bad!!!
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Marley, please visualize and feel me hugging you for dear life right now. Mike was so blessed to have you in his life and you to have him in yours. All things must end they say but that's no consolation when we're feeling the pain of this kind of loss. You know we care tremendously about you and I'm feeling very sad knowing just how much pain you're in right now.
RIP Mikey
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If I could, I'd put my arms around you and hold you.
Sending love to you and all of your family members.
Rest in Peace Mike.
:grouphug;
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:grouphug; :cuddle; Marley please know that we are thinking of you. I can not even imagine how you are feeling. I just know that I am so sad reading your post. I am so glad that you had the time together when he was coherent to express your feelings. Wish I was clse enough to give you a real hug. :cuddle;
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I am wiping tears from my eyes and wish I could reach through the cyber sphere and wipe your tears and give you and all your family :grouphug;
Dear Marley you are indeed a very special and loving person :cuddle;
RIP Mikey
xxxoooxxx
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love you, Marley...through it all, you have been truly amazing and inspirational to the rest of us caregivers
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Dear Marley, I have learned so much about true love and caring from reading your posts. I am very sorry that Mikey did not have the health he deserved and that you do not get to have 50 more years to love him and be loved by him.
RIP Mikey
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Marley..I am so sorry for you. Please feel my hugs. This will not be easy and no..time does not heal. Time only "changes" how we look at it. I know, I got so tired of people saying stupid things. Thank God you had your family day when he could visit..I wish so many times we had that. You two were so lucky to have each other in your lives and you will have all those memories..keep those alive for yourself, children and grandchildren and your parents.
Please let me know if there is anything I can do.
Ann
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Marley I wish I could give you a BIG hug :grouphug; :grouphug;, when you said how you ran to mama I wanted to cry because that's what we all do if we can.
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Dear Marley, I was worried because we hadn't heard anything for a couple of days. You are amazing. You gave your family such a wonderful gift by bringing Mike home. Those moments will always be precious to all of you. I have cried so much this week, for so many reasons, but I am sitting here with tears flowing again. I don't know if I will handle things are graciously as you have when I am in your postiiton. I pray that God will put His loving arms around you and walk beside you as you honor Mike. I know the angels are making him feel right at home. Thank you for sharing your love story with us. We will be surrounding you and your family with loving thoughts. Take care of yourself. We all love you :grouphug;
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Lifting Mikey and your family in prayer. This is not an easy thing to deal with, take your time and deal with this in your own time and in your own way. :grouphug;
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Aw Marley, I am so sorry that Mikey has gone. You're feeling a pain I can't even imagine. :grouphug;
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Marley, I too wish I could hug you, nothing anyone says can ease your pain..............but as time goes on you will know that you did everything for your Mikey and you will remember that he loved you so much. Such great love brings great pain too. My tears are genuine although I have never met you, I do feel for your suffering.
Love to you and your dear family :grouphug;
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My condolences to you and your family for your loss :grouphug;
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Marley, my heart is broken for you and I pray God gives you comfort and strength. :grouphug; My thoughts and prayers are with you and your family. :cuddle;
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I am so sorry.Cheryl
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I am hurting for you. but I am glad that you all had that time with him to feel his love for you and to express yours for him. My love, caring thoughts and prayers are with you at this time. :grouphug;
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Marley,
I too got choked up when I read that the first thing you did was call your Mama because like someone else said, that is what we all would do, if we could. I am sorry for your loss.......... :cuddle; :cuddle; :cuddle;
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There is nothing anyone can say to ease the pain or emptiness you have in your heart right now. I am sending prayers and hugs to you right now. :flower; :flower; :grouphug;
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Hi, I am so sorry for your loss- I hope you have peace. My heart ached for you when I read your posts- I admire how much you love him. :'(
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Marley, I have been thinking about you a lot today. :cuddle;
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I've read all your posts and feel like a lucky lady to have so many people who care. Thank you everyone for all your prayers and support, cuz I'm gonna need it. This sucks so bad and hurts so much I can't describe it with words. Someone said with great love there is great grief, OMG, you were so right!! I feel numb right now and pretty lost. I found out from social security yesterday that I don't qualify for survivors benefits and now have only my SSDI to live on, which isn't even enough for the house payment. My son said he will help me but I'm thinking if I want to keep our house, I need to get a roommate. WOW, I can't believe how much my life has changed in a blink of an eye. Not only have I lost my best friend, now I might loose our house too. This is a little too much for me to deal with and I'm having a little (little? ha!) bit of a hard time wrapping my mind around all this right now. Once I get my meds worked out I'm going for a part time job. As long as I make under a certain amount I can keep my benefits. GOT to keep my medicare or I couldn't get my meds--no meds no job. DAAAMN!!! This is some scary shit for me, pardon my French but there's one thing I am extremly grateful for and that is that Mike had no idea this would happen to me. Thank God for that!!!
I've gotten used to waking up with him not in bed with me and instead of seeing his head on the pillow, it's our dogs head instead, but it's walking out to the livingroom and seeing it empty and exactly the way I left it when I went to bed that's hard. When I first wake up I'm not remembering he's gone but when it hits me, it's like a weight on my head and in my heart, feels like I just gained 10 lbs. Saw my grandkids the other day and we talked about Grandpa for a while, nobody cried, which I was glad for; but I told them it's ok to cry if you feel like it. I was better than I thought it would be, we watched a movie--that new Kung Fu Panda--cuddled up on the couch eating ice cream. It was a nice night.
I'm gonna continue to post on here even though my caregiver days are over, I like you guys and I want to stick around. :) Thank you whoever put Mike's name on the rememberance thread, that was very nice. I love you guys
Marley
:guitar:
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I hope you can work out your living arrangement. It is a huge change and it's so difficult that you're forced to make choices now when you are grieving. Sending you lots of BIG HUGS!
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Please do stay on this site...I think it will only help you to talk talk and talk some more about Mikey...that is what helped me so much..talking and writing. We are here for you.
Ann
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You have an awful lot to deal with right now. Please do keep posting. :cuddle;
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Please do stay and please share whatever you want to. You know what it's like here, there always be someone around to care and share. We all love you. :grouphug;
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Marley, I am glad that you want to stick around with us. :cuddle;
This one's for you, your grandkids, your son and your dog :grouphug;
I am sorry this is so hard at a time when you're hurting so much.
Alene
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There truly is strength in numbers, Marley :grouphug;
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:grouphug; Marley, my heart aches for you. Please keep posting and let us know how you are doing. :cuddle;
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Marley :grouphug; :grouphug; and please stay as you will forever be IHD family.
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We now care very much about YOU and about how you're managing Marley so I hope that you'll think of this site as a place of some comfort and slight respite from the tough feelings you must now face. :grouphug;
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The pieces left behind are so hard to put back together. I haven't lost a spouse, but did lose my best friend, my Mother. Even though it has been 16 years, I often find myself longing for her understanding, and loving embraces. I feel so much for those who lose loved ones, as it brings back my feelings of loss. I wish I could tell you it gets easier with time, but I am not one to lie, I know it isn't much easier for me now, as it was the day I lost my Mom. It does help to talk about our feelings on line, there are lots here at IHD who can relate to things our love ones who surround us sometime cant. Its weird that we have to be the strong ones now, the "glue" if you will, to keep this world we live in together. I have big shoulders, but sometime the load gets too much to carry, and I too breakdown. Reading your post, I understand what you are feeling. I pray you can find a way to keep things together in your world, best of luck to you & what you have to do.
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Marley, you and Mikey will always be remembered here on IHD. It would be great to keep hearing from you. It's now time to take care of you. :grouphug;
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Dear Marley, We all love you and consider family. I have thought of you so many times this week. So many things to handle and to adjust to. You took such wonderful care of Mike and made his transition so much easier. Now, I hope you can rest and breath for a moment. Let your son help you as much as he can and lean on others for awhile. We will always be here waiting for you. Your experiences will be a great support to the next person. Take care, Marley. You are very special to us. :grouphug;
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Good morning my friends
It's taking me a while to get back to these normal every day things, all I want to do is veg on the couch wrapped up in my quilt. I did start writing some thank-you cards yesterday and even mailed the ones I finished. One of our sons' friends gave me the most precious gift at Mikey's service, he was taking a philosophy course (son's friend) at the local college and came over one day and filmed my man at one of the things he does best--talk talk and talk some more. I remember when they did it three years ago, I was in charge of keeping the bird and dog quiet. :) Michael was a very intelligent man and remembered everything he ever read or heard and was such an interesting person to talk to. OMG, I will SO miss those conversations we had!! I haven't watched the CD yet and I don't think I'm ready for that, I can still hear his voice in my head. This is so incredibally painful!!
His memorial was beautiful, very informal and casual. I put tons of pictures up on 3 pegboards and had them displayed along with his (filthy, eewwwww) fishing hat......he never would let me wash it cuz I'd wash off all the good luck.....I wasn't about to wash it now. He and our daughter had a thing with elephants so I brought one of those too. If it was a good day, he was walking in FRONT of the elephants, leading the parade---on bad days, he was BEHIND the elephants scoopin the poop. That's how our daughter would ask him how he felt---"are you walking in front today"? My dad said the eulogy and he actually just started talking and didn't read from his paper. After that, other people stood up and shared a story they had about Mike. Even our 8 year old grandson got up and told the story of how Grandpa hid in the laundry room and waited till Grandma opened the door and he jumped out--scared the krap out of me too!!
Lots of hugs, lots of tears and tons of memories being shared. My brother taped it for me too, so I have that memory.
I raise my coffee cup to the best man I've ever known. He loved me so completely, always accepted me for who I am and never tried to change me. We so filled up our lives together with so much love, I know I will never find another man like my Mikey!!
Thank you all SO much, this board has helped me get through hell
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......wasn't done.......
Just wanted to thank all my friends here at IHD and pleas know you all are helping me get through the worst fear and pain I've ever felt in my life. I feel your love and am thankful for your "shoulders". I re-read your posts and get comfort from them.
Love
Marley
:guitar:
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Thank you so much for that post Marley. It's a wonderful glimpse of Mikey's character and the love you shared. Best wishes to you. :cuddle;
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Marley, :grouphug; you are truly an amazing woman. :cuddle;
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Good to hear from you Marley, thank you for sharing this with us - it sounds as if Mikey had a wonderful send off. You know how lucky you are to have had his love (and he to have yours), I'm not going to offer platitudes, the pain will not completely go away and time doesn't really heal (I know from personal experience) but you learn to live with it and to remember the good times. One day you will be able to smile where you now cry.
We are here for you when you need us and if you have a day on the couch in your quilt then so what, everyone understands - you deserve a little time to veg out, you are going through a very tough time. We love you, hope that helps a little :grouphug;
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you are in my thoughts daily, Marley...
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Marley, what lovely words you wrote. Thank you for sharing Mike's memorial with us. I can't imagine the pain you have right now. Time is the only healer for such an enormous pain. We all think you are incredibly strong and are proud to know you. :cuddle;
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Thanks Marley for your beautiful post. I hope you'll always know how welcome you are here and how much we'll be thinking of you in the weeks and months to come. Sending you hugs and wishes for a peaceful heart to carry you through these painful times.
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A very eloquent writer of words and expressing feelings
best of luck in your journey moving forward :thumbup;
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take care Marley. :cuddle;
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They say that the "first" holidays are the hardest but I tend to think they are all hard but I do hope you will love on your family and friends that you will be around on Thanksgiving as I am sure this holiday will be very hard. :cuddle;
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Oh Marley I know you are struggling through this and although it is hard to endure this type of loss I know first hand how hard it is at this time of the year. All I can say is everyone handles this their own way so don't let anyone try and tell you what is right or wrong because there is not a right way or a wrong way to deal with such a event. Just know that if it feels right to you then it's right. We will always be here for you whenever you need us. If you would like to contact me by phone if you feel a need to just talk to someone PM me and I will send you my phone number. Hold them grandchildren a little tighter this holiday season. :grouphug;
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:grouphug;
:cuddle;
Take care dear Marley
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Hi Marley just wanted to let you know I am thinking about you and Mikey. The road you are on is
truly the hardest of any that we have to travel. I wish there words to say that would make you feel better, but of course there is not. Time will ease the pain, but that doen't help you now.
Please know that you are on my mind and in my prayers.
Love, Mimi