Husband 45 with no dialysis for 6 days-says he's quitting

[RichardMEL]

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.

[johnswife]

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.

[Rerun]

Bless your heart.  Could you call his doctor for maybe something to keep him comfortable like morphine?

   

[Marsh]

 

[MaryJoe]

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!  )

Anyway, I wanted you to know that I'm thinking about you, and hoping you'll have the best possible day.        

[okarol]

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}}}

[chiromac]

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.

[billybags]

My prayers are with you both. Stay strong.

[willowtreewren]

OH, this must be so hard. Just think about the happier memories when you can.

 

Aleta

[RichardMEL]

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.

[johnswife]

 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.

[MooseMom]

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.

[Hazmat35]

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. 

         and so many more 

[amanda100wilson]

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.

[johnswife]

 
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;)

[justme15]

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.

[frankswife]

  You're in my prayers, johnswife

[boswife]

WEll well,,,, It's a tad late as you've already had a crappy day but..................    Lady.     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...        

[Fatkidney]

I'm sorry you had a terrible 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. 

[RichardMEL]

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! 

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.

 

[Jean]

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".

[cariad]

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!

[willowtreewren]

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.

 

I wish we could just come and hug you and sing Happy Birthday to you. 

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

[Wat76]

Happy Birthday and may you continue to be blessed. You are a Gos send.

[MaryJoe]

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.     At least I got the day off.