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How do you cope.....

This is mostly a rant post but please if you have some helpful advice, please share!

In 03/2016 we found out that my DH has End Stage Renal Disease. It was a world wind of hospital stays, surgeries, doctors appts....and while it was all new we were coping okay, we were staying positive. For me now though its getting harder and harder and I feel guilty for that.

I am trying to find a balance between being a caregiver, a wife, a mother. We are finally doing at home hemo dialysis which all the doctors say is the best for him. And I know this sounds terrible and selfish but I don't think my husband understands the toll I am feeling...I know he is the one fighting for his life. I am extremely grateful that is he willing to do whatever it takes to stay with us and in awe but I am so tired. He can no longer work and we are waiting for disability, I am trying to work as much as possible as a sub (after being a SAHM for almost 9 years) but I can't get full time work because I have to be available for him and the kids as much as possible.

This has completely changed him, I figured it would...but how do I fall in love with a completely different man now? I love him and always will, I will never leave his side. For sickness & health, richer & poorer all that stuff, but I miss being in love. Again selfish I know but I don't want to be just a caregiver for him and a mother to our kids. I want to be in love like we were at 17! I want to parent together, I want to enjoy this life and KIDNEY DISEASE is taking that way from us! UGH!

*A Transplant is out of the question until he can lose 75lbs and I think that is one thing he isn't will to give up (food that is)*

Any HELPFUL advice, other than suck it up and go deal?

Trust me, I am already on anti-depression & anxiety meds (which was my LAST resort!)(Not a fan of meds for myself) (And not a fan of therapist) (Which is why I came to you fine ladies)

Answer Question
 
rebel07

Asked by rebel07 at 10:30 PM on Feb. 27, 2017 in Relationships

Level 13 (1,262 Credits)
Answers (9)
  • I am sorry your family has this terrible problem. My sister had sudden onset kidney failure and was able to get a transplant, which is failing after two years. She has pretty much given up on just about everything.

    In your situation, as caregiver your bear a heavy burden. Would it be possible for you and your husband to get out on your own - leave the house, get a sitter for the children, even just to stroll through the mall or walk somewhere, or sit in a park together and watch the children play. Something to help jumpstart that connection again. Would he be able to do more around the house to help out? You said you'd rather not do therapy, but maybe this would be a help. Talk with your religious and medical advisers. I feel so badly for what you all are going through. :(
    Bmat

    Answer by Bmat at 9:10 AM on Feb. 28, 2017

  • So he is not willing to loose the extra weight to have a transplant? He is not willing to try? But you have to be his care giver? I think you need to have a big talk with him. Is he so bad off, he can't do for himself?
    louise2

    Answer by louise2 at 2:51 PM on Feb. 28, 2017

  • Things change over time and even in the best of circumstances it may not be realistic to expect to maintain the excitement we all had at the beginning of a relationship. And then if a situation like yours takes place it is even harder. As Bmat said try to find some things you might be able to do together....like a walk together, go to the park, maybe a super simple picnic? Allow yourself to grieve the relationship you once had, but think outside the box to find things you can do together now. If he loves you as much as you love him you can get through this together. Your life will be different, but can still be good. And you will never regret caring for him as you are. GL
    silverbuttons

    Answer by silverbuttons at 5:54 PM on Feb. 28, 2017

  • You are going to have to take time for yourself. My bil had a liver transplant and for all the years leading up to that my sister tried to be there for him all the time plus raise 2 preteen kids. She wouldn't let anyone do anything for them. Finally it took the family to step in and tell them both ENOUGH! If she didn't take time out for herself every once in a while then she'd be the one that ended up in the hospital next. At that time I think she was so worn out it was a relief to hand some of it over. Family took turns taking him to the Dr's, mowing grass, fixing meals, taking the kids to practices/games, etc. Her health picked back up and he relaxed more as well. I think he knew what it was doing to her but he wasn't sure how to stop her.

    You need to sit down with dh & tell him that you want him to have many more years with you & the kids. If he doesn't do it he WON'T! It's hard but sometimes men need that.
    baconbits

    Answer by baconbits at 2:29 PM on Mar. 2, 2017

  • I am sorry. I am in the same boat with a different disease. I actually watched him die last June. Like his strings were simply cut and he was gone. We were lucky that we were in the hospital and the nurse was on top of it and got him back.. Since it has been one battle after another and one surgery after another and This is to the point that he can not dress himself completely or even get into a shower alone. It is hard and I completely understand how tired you are. Things are getting better for us and they can for him as well. It is a steady walk, one step at a time.
    Part of the battle is that men and women for that matter identify themselves with the job they do. They identify as the provider. He is now neither and he no longer knows who he is. He has lost his identity. It is very very hard. Is he also being treated for depression and maybe a little counseling? Losing weight is hard and especially is you are
    Dardenella

    Answer by Dardenella at 1:38 AM on Mar. 4, 2017

  • restricted. I am not sure what he can and can not do but food may be the one thing left that he enjoys (or so it seems to him) He needs to refocus and maybe look into working on line or in a hobby type of thing.
    You want to be in love and I understand that too. He is literally not the same man,. He needs to find himself again so that you can find again what you love about him. People who are really sick often can not see beyond their own pain. I am sorry but it is true. In many ways you and they are isolated. Some hospitals or communities have support groups for those with terminal (or likely terminal conditions) They are generally free or very minimal charge but they can give support to the ones going through it and often there will be something for the spouses as well. It is good to be able to talk to someone who is also going through the same stuff. If you can find one thing that you love and focus on that GL
    Anonymous

    Answer by Anonymous at 1:46 AM on Mar. 4, 2017

  • That should not be anon it should be me. Sorry I hit the wrong button.
    Dardenella

    Answer by Dardenella at 1:47 AM on Mar. 4, 2017

  • ESRD is a hard thing to deal with. My son was diagnosed at 17. They gave him a year at the most. He lived another 5 years. Your hubby is going through the stages of anger associated with the terminal illness. We were told that ESRD automatically qualifies the person for SSD and Medicare. Get a lawyer on that.


    ESRD and Disabilty


    I understand the burden of being a caregiver. We moved in with my MiL in 2007. We were going to take care of her together but by thought he has hurt his back while we were moving. No. Turned out to be a tumor on his spinal cord. It was paralyzing him so he had it removed. Now it was just be taking care of hubby, son, MiL and my late SiL. It was not easy ... my patience list has been cut down by 75% (son died in Sept 2008; MiL died March 2013 and SiL died July 2013).

    CONTINUED ...

    SpiritedWitch

    Answer by SpiritedWitch at 2:48 AM on Mar. 13, 2017

  • Continued ...

    As a caregiver, you have to take care of yourself as well. I don't like taking meds either but I was begged by my hubby to take them after my health scare last year. Heart failure with 150-200lbs of fluid gain. Heart was only working at 30%. With my doc's help and medications (hated ).I lost the fluid and now my heart is back to 100% working order.

    Pick up a hobby that will take your mind off other things for a while.

    I wish you and your husband many more years together.
    SpiritedWitch

    Answer by SpiritedWitch at 2:57 AM on Mar. 13, 2017

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