My 60-year-old husband is in renal failure, on nightly peritoneal dialysis, and on the transplant list. I've been feeling frustrated, anxious and isolated, and that often comes out in anger. Every day is the same: I work from home, take care of the dog, pay bills, do housework, and have dinner ready when hubby comes home. Our conversations (especially lately) seem to almost always revolve around his health: blood pressure, sugar, weight, drain pain, etc. It seems we're drifting apart after 30 years of marriage. I miss the things we used to do together such as hiking and traveling. We had to cancel a planned trip to Alaska for our anniversary this year because of him being put on PD. Being new at it, he wasn't (and still isn't) confident in taking any extended trips due to having to take along his cycler and dialysis fluids. I have no family nearby (most have already passed on) and feel guilty if I do anything fun without him. Is anybody else experiencing this? I am getting therapy, but wanted to reach out to other caregivers for ideas on how to cope. Thanks.
Feeling isolated & depressed: My 60-year-old... - Kidney Disease
Feeling isolated & depressed
First, welcome to this forum🙂
As I think about your family situation I remember back to my mother and I learning to administer HD dialysis in our home for my father many decades ago. While it got easier with time and practice, I think it took us nearly an entire year to become completely comfortable with in-home HD. Getting through all the major holidays and births of new grandchildren etc.
Socially we were rather isolated for several months. It was overwhelming. Fortunately we had a few close friends who made a point to come and visit at times that worked for us, etc.
My father had been a band director. He also loved directing the church choir. So the first planned outings away from home we took were to choir rehearsals. Within a few weeks he was directing the choir again. From there we planned other longer outings. We eventually encouraged dad to go have coffee with the men at the diner every morning. He did this independently.
My sister had her daughter during this time. My father and mother planned a trip to visit her where he would receive HD dialysis at a local dialysis center, etc. That trip was s game changer. Dad learned he could safely travel and receive his dialysis. From that point forward he and mom planned various trips which they took every year even flying to see her siblings in upper state New York. It’s pretty remote in upper state New York but they discovered that there was a dialysis clinic in Lake Placid so that’s where they stayed and dad had his treatments there.
Having shared all of this I would end by saying that they weren’t able to do everything they had done before, but they came up with replacement activities they both enjoyed. Plus dad made it clear to mom that he wanted her to do things independently with her friends too. He realized she would outlive him and her friends and family would be critical to her after he was gone. He used to talk with me about that.
I will keep you and your husband in my thoughts and prayers.
Jayhawker
My husband has cancer and kidney failure. He went on dialysis over a year ago and that meant be at the dialysis center Mon, Wed Fri. It was an end to taking a cruise or a fun trip. We have managed to ( with a lot of documentation) get dialysis in another state and be able to go away twice. He is still tied to a facility 3 days a week but he is not a candidate for PT at home. Being a caretaker is hard but I am thankful to still have my husband after 8 years of cancer.
when I expected to be put on dialysis I did some research about traveling outside the US. I found a cruise option that may be worth exploring; although, I never went on dialysis so haven’t tried this myself. But it’s called Dialysis at Sea.
Jayhawker
Thank you. I looked that up. It is expensive and medicare does not cover any of the expense but it is an option if we want a real vacation. 🤔
Yes, it would definitely require some time saving for me at least. However, perhaps ask family to contribute to a fund to cover the cost for the cruise for your holiday and birthday gifts????
My siblings and I did this to cover airfare for my mom to travel and see her siblings and grandchildren once a year after my dad passed. At that time United had a special fare rate for seniors which they called silver wings. It was more expensive than what my siblings and I could afford by ourselves but her siblings were delighted to chip in to help cover the cost. It made such a difference for mom carrying on after dad passed. We did this for her annually each year after dad passed until she was diagnosed with cancer. So, this was her holiday gift and birthday gift each year…
Jayhawker
You are not alone feeling this way. It doesn't seem that long ago but it was 2015 and my wife and I were taking trips and walking miles several times a week. Life was good. I retired in early 2015 and was doing home remodeling while my wife stayed working her job.
At the end of 2015, my wife had to have a total hip replacement on her left side. That surgery was a mess and she was in a lot of pain for quite some time. She had a butcher for a surgeon and not a doctor. She was traumatized and it took a good while for it to heal and her to recover.
In 2017, I got an autoimmune disease that almost killed me. I had stage 5 kidney disease from Vasculitis. I was on dialysis for 9 months and taking heavy medications to treat the disease. My wife spent two years pretty much caring for me because I was so weak. She was pushing me around in a wheelchair for months. I am currently stage 4 CKD and get fatigued easily during the day. The Vasculitis left me with severe neuropathy in both feet. I can't stand having shoes on my feet and it's difficult to walk very far. I was DX with prostate cancer in 2019 and went through radiation treatment for that. In 2020, I started seeing a pain management doctor for lower back pain. I've always lived a very active life and worked a lot of physical jobs. I have severe DDD, scoliosis, lumbosacral spondylosis, and spinal stenosis. Between this and the neuropathy in my feet, it's hard for me to get around although I push myself all the time. Due to the CKD, I can't take NSAIDS so I take Hydrocodone to relieve the pain.
A couple years ago, my wife's right hip joint started bothering her so she went to several different ortho doctors and even had surgery set up a few times but she would get sick each time and have to cancel. This has continued and she is still in need of a replacement but in the meantime, her labs were not looking right during this year and a half period and her GP didn't say anything. When her kidney numbers got low enough, I got her in to see my Neph who suggested that she see a hematologist which she did. He had her get a bone marrow biopsy and it turns out that she has multiple myeloma, a fairly rare blood cancer. That's why she kept getting sick so easily. She is in her 8th month of treatment and plans to get her hip replacement in the next few months. She has been battling bronchitis for over a week now and it's hard for her to fight it off with her weakened immune system She just retired this past May.
So yeah, it's a real bummer when your golden years turn out to be sour grapes. Currently, I'm 71 and she's 66. Our lives have definitely changed over the past 8 years. It's funny when we get up in the morning with both of us moaning and groaning because of all the aches and pains. We rush to get our cup of coffee and our pain meds. I've got a steroid injection scheduled for my lower back next week. We feel pretty much confined to the house for now. A big day for us is a trip to the grocery store. Fun times!!!
Wow! Sounds like you have managed to maintain your sense of humor through some very challenging times. I believe this is key. Thanks for sharing your story & I will be praying for you both.
First thank you for being a caregiver to your husband it is very hard job. I am caregiver to my husband plus I’m on dialysis pd myself. My husband after the last three year health really went down . He has to use a rollator to walk and he falls a lot last three years nothing but doctors. And of course with me being on dialysis always doctor visit I am on the transplant list . But I was a traveler and my husband loved hiking his dream was to walk the whole Appalachian trail . He did part of it but when he retired wanted to do it all but that not happening right now his goal is to walk for six minutes he is up to four. Life changes we never know. But I do know you have to do things for yourself. I have learn to substitute different things I’m not ready to travel with my machince I only been on dialysis since February but I hope I get there. I know it can be done .I join the senior group at my church my husband doesn’t want to do much but I need to. We have pot luck . Going to plays. Taking a day trip. I join a book club. Go shopping and lunch with my friends. So find something you like to do and start doing thing in your community . Don’t feel quilts ask him if he want to join if you try to include him and he chooses not to don’t let that stop you I was like you I felt quilty but he always said no. Now when I go do something he is always anxious to hear about it.
Thank you for your advice. I guess I knew I’d need to do some things on my own, but I need to give myself the grace to do it. 🙏
If you don't "give yourself the grace to do it", you will end up resented him. I lost my husband last November after ten yours with Alzheimers Disease. I have been on Dialysis for over 3 years now. I miss him every day. aWhile he was alive, my life ws a living hell and (I often thought what it would be like if he were to pass. Not anything I had imagined. I am lost and lonely suffering trhis dreadful disease on my own. I am on the transplant list at two transplant centers. The average wait time for a kidney transplant is 3-5 years. I am 70 years old. I( don't think I will ever see a transplant. Today is my pity party day I guess. Just take care of each other. Find something you enjoy and do it - without him. You need the break. Even if you just go and sit in a Mall for an hour or so. Do it! You earned it, it is your right to take care of yourself. I was so busy worrying about him that I forgot to take care of myself and look where I ended up. Respite is important. Find a way to take a break.
My hubby got a transplant at age 71, exactly 1 year after starting dialysis. We were willing to consider a kidney with issues which sped up the process. We also listed at two centers - one was far more active than the other. I recognize that we're all different - blood type, antibody levels, and more can make things difficult. But sometimes things can come through for you very fast. I, for one, really hope you get your gift soon! If you want to look at the outcomes of various transplant centers, this is a good site to check: srtr.org/transplant-centers...
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