Dealing with guilt

[platypusak]

Had been dealing with kidney disease for 12 years. Had a crisis in May and was suddenly on dialysis. Manual PD and two months ago graduated to PD. Ycler. Am 74 years old and sudden,y my husband of 51 years is my caretaker. I’m too washed out to do much of anything. He cooks, cleans, does the laundry and works paerrume. We used to travel all over the world, go out to movies, shows and concerts. That has all stopped. If eels so badly for him that our life has changed for the worse so quickly. The intimacy we shared is gone and now I feel like his burden. Has anyone else dealt with this. I try to show how much I love him and appreciate everything he does but our relationship has changed

[OperationKidney]

Not personally have I been in that specific situation, but chronic illness does change things in relationships and that can be hard to deal with especially if you were independent before starting dialysis. The good news is PD is generally easier on the body so hopefully some of your energy will return so you can do the things you enjoy. In the meantime I'm glad he is caring for you and after as long as you two have been married I imagine he would rather have you around than not!

[Nullity in reply to OperationKidney]

I’ve been married for 33 years and honestly, this has made my husband and my Relationship stronger in that we realize how much we really mean to each other being so close to losing it all. I know this is hard but I’m sure he doesn’t see you as a burden. I think he probably feels that he’s lucky to have you still and will do whatever he can to keep you even longer. I understand a lot about the travel because that was our life, 65 countries and counting, before it all came crashing down if that helps. Not sure if my rambling has helped at all but if it helps just a little bit then I’m happy.

[platypusak in reply to Nullity]

Thanks for your reply. I feel so lucky to have him in my life. You reminded me of just how good we are together. He’s always take care of me. This is above and beyond. Am trying to get stronger to take some of the burden. We have had an eventful life so far…this is another adventure I guess.

[platypusak in reply to OperationKidney]

Thank you for your kind words. This new normal I hope will get better. At this point he does so much for me. I hope I can get stronger.

[cs65 NKF Ambassador]

I can sympathize, too. I am almost 70 and it took about 14 years til my kidneys started failing and I approached dialysis. I chose a fistula and in center hemodialysis because I felt safest with that kind. I went through 4 years of dialysis and an episode of stress-related cardiomyopathy which hospitalized me for a week, and the whole time my husband stayed by my side. He took care of so much while he was working part-time and I truly appreciate him. I was able to also work part-time while I was on dialysis until the heart thing happened, then I retired again. I took good care of my health and was able to help out on my off days until last year when I fell and broke my hip and had a partial hip replacement, spent 20 days in a nursing home for rehab, then 3 months later I got the gift of a kidney transplant. It's been a hard road to come back from all that and I started with the exercise classes I had been doing on Zoom last spring into fall (with RSNhope.org) and lately I've been doing physical therapy again for my hip. My husband has had to shoulder even more of the daily chores, but thankfully hasn't had to work since COVID hit last spring. One of us will probably have to work again, but right now we're waiting out the pandemic. Little things help us to cope with our changed lives - we never travelled that much because of caring for our cat and dog, so we do little day trips and take our new dog with us. We also enjoy watching movies and tv shows together at home and we cook and wash dishes together and we have a little raised garden. He loves his new dog and goes out frequently with her for long walks and rides (that's his stress relief, I guess). I'm mostly at home due to not feeling safe from COVID even though I'm triple vaccinated due to being immunosuppressed from the drug I take for the new kidney. I remain thankful for my new life and being able to share it with my family. Your life has changed, but it can be good if you accept the changes and find new things in common you can enjoy and even try new or old hobbies you never had time for. I did and do a lot of volunteer work with my dialysis center (I am a Patient Ambassador for my center and enjoy talking with new patients, esp., I am also on my center's QAPI Committee and a PFR Representative to Network 1 of the ESRD Network). It does help to spread your wings and do things to help other people. There are also volunteer activities you can do at home through your local branch of RSVP (Retired Senior Volunteers Program) when you are able to. Hope this helps a little - take care, both of you!

[Jayhawker in reply to cs65]

Such great ideas and a great post!

Jayhawker

[platypusak in reply to cs65]

Thank you for your reply. Helps to have more perspective. My husband is such wonderful support. Hope I get stronger so he doesn’t have such a huge burden.

[cs65 NKF Ambassador]

Also, you may be able to have some help in your home. I worked for 20 years as a mealsite manager in a senior center and as a homemaker, then personal care homemaker and home health aide for even longer. The mealsite was run by our local Area Agency on Aging, a wonderful resource for elders to access services they might need. You could check with your local Area Agency on Aging to see if you are eligible for any programs they run, like meals on wheels, contracts with home health agencies, etc. I do caution you that the meals on wheels are not that kidney friendly, but are a great help for days you just aren't up to preparing meals. You can even hire private care in your home if you have long term care insurance or the means to do so.

[Darlenia]

Hi Platypusak. I became a caregiver to my hubby when he went on dialysis in June 2020 at age 71. We, too, were a very active couple and then things dramatically changed. It was shocking how fast everything went upside down for us. However, I simply want to reassure you that your love and respect for each other will carry both of you forward as you both adjust to this new situation. Throughout, my hubby has been a very sweet, loving man and that has been a great blessing to me as we've moved through chronic kidney disease and through dialysis, and then - most recently - to a kidney transplant. (Yes, hubby was transplanted at age 71, exactly one year after starting dialysis - perhaps this is a consideration for you too.) One simply finds a new normal for each situation. We currently take day trips, visit museums, go to live theater, etc. And those things are mood brightening and memorable too. As the saying goings, "Live today because the past is gone and tomorrow isn't here." You, too, will find good in the days ahead. Sending encouragement and positivity your way!

[Tissybell]

My husband and I have the same issues. It can be difficult, but rest and relaxation is important. Sometimes we just try to spend quality time at home, and get out when we can. He has medical issues as well, so we are quite the pair. Hubby also does most of the chores and shopping which gives him an activity routine and sense of accomplishment since he retired. All I can do is work part-time at a very flexible insurance business so I can at least contribute some income. Take care yourself, and don't feel guilty.

[jw5207]

Your story sounds so much like mine. I’m 72 and my husband of 52 years has had to take over the household chores I used to do. I’m so wiped out after dialysis! He never complains and encourages me whenever I can lend a hand. I chose a fistula and in center hemodialysis for the same reason NFK AMBASSADOR did ….. because I feel safest with it. That means my husband drives me back and forth to the facility also. It’s changed our lives unbelievably but he never complains. Yes, I feel guilty but we’re thankful for this time we still have together, as I’m sure you are too. Talk with your husband about how you feel. I bet he doesn’t want you to carry this guilt. And I’m sure, if he’s like my husband, he’s doing all this out of love!