So much great info on this site, it has really helped me these past months.
Short version of my dad's 6-month post-amputation story. Hoping for some insight and/or advice.
My dad, 86, controlled diabetic, zero other health issues, was living independently, took care of his own house, dogs, still worked part time. Never in the hospital his whole life!
Informs me in September he needs to get a toe amputated due to non-healing of a cut. Has been seeing vascular for a year already, knowing he has a circulation issue. I knew nothing about any of this.
Toe amputation doesn't heal, bad infection sets in. Ends up with below-the-knee amputation and vascular surgery to open up blood flow.
Great rehab for 4 weeks, I bring him home to continue recovery, PT, OT, visiting nurses, private duty nursing, he was thrilled to be home. But, starts refusing PT and OT, in bed too much, just not cooperating. Home for 6 weeks, develops another infection, hospitalized to get that under control, then off to rehab again to gain back strength to be able to get a prosthetic.
Hates the rehab, doesn't eat or drink enough, constantly complains, and loses weight and ends up back in the hospital with a UTI, dehydration, then MRSA. ICU for a week. Recovers, back to another rehab he likes.
10 days later, he's back in the hospital for severe dehydration, because he started refusing food and water again. He's had a horrid week this past week in the hospital, delirium especially. They are doing everything to help him. Just found out he has ESBL, another infection. Ugh.
Through all this, he still claims he wants to get home and get his prosthetic, but he has really gone downhill not doing what he's supposed to do to get better. Frustrating.
He was on antidepressants for a while, but refused to take them after a time.
It's amazing what he has endured, but I think he won't get through this last huge setback. He has a very clear health care plan, w/ me as his health care POA. It's time to make some decisions what to do next.
Waiting to meet with the doctor today.
Thanks for reading this, it's been a long haul for sure. Was hoping for a different outcome, but life is about choices. Wish my dad had made some different ones.
12 Answers
Helpful Newest
First Oldest
First
It's possible that he has had a series of tiny vascular events in his brain that have led to loss of motivation and concentration. His organs may have been 'fine' but that means "as good as you can expect from an 86 y.o. man with diabetes and a non healing wound." The stress of these several months and all the losses he has endured is significant. Find a private time to talk to him/listen to him. What matters the most to him now? once the toe amputation (pretty minimal impact on daily life) failed, he has needed more and more care and feels worse physically and emotionally.Let him know it is his choice, as to continue treatment or to focus on having pleasant comfortable days. If he seems interested, ask the social worker about local hospice programs, and you call them and make it clear that the outreach person needs to talk with you (or meet you, if possible) to talk about how they could help your dad.
You need your dad to agree to meet with the outreach team. BUT he only. has to listen, he does not have to sign anything right away and should not be pressured to do so.
Good luck to you and your sibs and your dad. Hard to get old.
ADVERTISEMENT
I have never been in Rehab but I have been with my parents when they were in. BORING! Its not home and no matter how much they try to do activity wise you are sharing a room with a stranger and the food is unappetizing. Think about it, by the time it gets to you, the hot is cold and the cold warm. Your Dad probably soldiered thru the first stay but the later ones were depressing.
I also think a person who never has been sick has a hard time dealing with it. My Aunt didn't have health problems until 85. She was pretty much told that it was in her head but eventually did discover her problem. What she died from was breast cancer she refused to do chemo for.
Your Dad is probably depressed. He seemed to be an active man before this. Its hard for this type of person to except they now have limitations. I don't want to be a Debbie Downer here but neither my GF or another classmate, both diabetics, that had legs removed could ever use a prosthetic. My GF because of a sore that wouldn't heal on her stump. Not sure about the classmate.
Dad may need help in learning to live with his disability.
We saw that at the same facility where Mom was. A very pleasant man had already had one above the knee amputation. His family and ours became acquainted and they shared their concern. Their parent refused to eat a diabetic diet and insisted on eating whatever he wanted, foods which weren't compatible with diabetes. Sure enough, he was back in the hospital and returned to the rehab minus the other lower leg.
He was so resistant, so insistent that he was going to have his own way, but it cost him dearly. My sister and I ran into his daughter later, after Mom had been discharged, and she shared that he was now on dialysis.
I felt such pity for that family, and for the man, in that he couldn't recognize or accept what was needed for his compromised situation.
I hope you can find a way through to your father.
Not fully participating in his recovery plan has cost him strength, weight loss, and heartache for those of us who have tried so hard to help him. He's bedridden now, weak and sick. Sad for sure.
My first thought is that the therapy in the rehab is too hard or challenging for him and/or that the therapist isn't suited or compatible with him. We had that problem,
Doing some research and being with Mom during one of her therapy sessions, it was clear to me that the male therapist wasn't compassionate and didn't really understand the scope of her injury. At that time, she was to have been nonweight bearing on the broken leg, but the therapist was insisting she should stand and walk on it.
We took her back to her ortho doctor who was very upset, wrote a letter to the rehab center, which we took to us with a meeting we requested when we complained about the therapist.
He was transferred immediately and a very kind, compassionate young woman who knew how to work with patients took over. Mom's outlook changed and she successfully recovered.
You might want to raise similar issues with your father, i.e., how he feels about the therapist, the exercises, and the rehab. In the meantime, do some research. Medicare used to provide an online list of rehab facilities and info on their standards, violations, etc. Alz. Assn. also had a list but I don't know if they still provide it.
You can also contact an ombudsperson who's familiar with ranking rehabs and get the "skinny" on the good and bad ones. When we did that, we learned that one facility, in a list of potential recommendations from the discharge planner at the hospital, had the reputation of "people going in but never coming out." Doing more research, this was definitely not a place to send anyone who wanted to heal and come home alive.
I think if you can find a compassionate therapist that might help.
Unfortunately, the second rehab he didn't like, mostly because of the food, was one of the only one available when he needed to leave the hospital. Its a huge problem with staffing shortages around here.
Even though I brought what food he liked to him almost every day, it didn't convince him to stay with the program.
My own father early 90s was ready and spoke with me about it. And he certainly wasn't facing what your father is facing. He was simply tired. We all die. That's a fact. Many are ready and as a nurse they told ME because their families would not hear it, would not listen to it, would not allow it.
Please consider what your Dad wants now, discuss hospice and/or palliative care with him. Let him be the one to decide.
I am so sorry, but the end is often a torturous long slow slog with loss upon loss. It can be very cruel. As an old retired RN of 80 I fear death not at all, but I sure do fear what they might do to me to get me to live, and my own Advance Directive is very clear about not only declining CPR and the "machinery" but also dialysis, and feedings via PEG, NG, or TPN.
Talk with Dad. Again, I am so sorry for all.