Finding it difficult making decisions for my DH

Justbreathe2, I'm sorry you are having this trouble.

My wife has a bum knee, too. We are avoiding surgery because general anesthetic can cause a significant decline in mental functioning in Alzheimer's patients. I think your husband may be right in not wanting surgery.

My wife had a recent bout with diarrhea, similar to your husband, because a bout of constipation killed the good bacteria in her colon, just as the antibiotic has apparently killed them in your husband's. Her doctor recommended bland diet and a probiotic, which solved the problem. I used probiotic capsules from Walgreen.

Geriatric specialists are hard to find. They make a lot less money than most of the other specialists, so few doctors enter that specialty.

I was faced with the same issue with my DH in the early stages 6 or 7 years ago. The neurologist was totally against any sort of anethesia. After injections and cortisone shots, the knees kept getting worse and i was starting to consider it about stage 4-5. An anesthesiologist said it was possible but the several physical therapists I talked to warned me against it. I guess rehab after knee replacements is critical. The patient must be able to follow directions and several steps are involved and they sound complicated for an Alz patient; if not followed the situation could worsen. We did not go forward and DH if now in late stage 6 early 7. He has been wheelchair bound for over a year. This a question I ask myself over and over. Should I have taken the chance against all advice and would he be in better shape now or is this just a progression of the disease. I don't know if there is a good answer.

@justbreathe2

Given his difficulty in following instructions around a wisdom tooth extraction and his reaction to the medications given at that time, it sounds as if the opportunity to do knee replacement has passed.

TKR recovery can be tricky. The pain in the recovery period can be extreme and relentless, sometimes for months. I came home with 11 medications on top of the ones I'd been given IV during the procedure which is generally done out patient. Despite the pain, at-home self-directed rehab was prescribed 3x daily from day 2. Rehab work is necessary to allow the joint to function as intended and helps with healing and even pain control. Even if you do get outside PT for him at a center or in-home, you'll be the one overseeing this aspect of his care. Unless he's the most docile and cooperative of humans, this is not going to be pleasant.

Regarding your wish that your DH be able to walk without pain, post-operatively it could be 4-6 months (or longer) to get to that place. Even with a good outcome, there are times when an artificial knee can be achy— I find extreme cold or humidity are triggers for me.

I would not rely on the advice of a surgeon around this. IME, with specialists, it's a bit like the 10 blind men and the elephant— they excel at their bit of the puzzle but can't appreciate the impact of dementia on it.

It's unfortunate the cortisone injections aren't offering relief. Has he tried something like Synvisc? Is he able to do PT now? While not curative, PT exercises to strengthen that area that supports the knee can be useful.

HB

I too have the same situation. My husband walks very little now due to bone on bone arthritis in both knees. Last year he could walk a lovely half mile walk in a nearby canyon but this year he probably could walk from the car to the trail and back, with pain. And he also has issues with balance, no doubt due to the Alzheimers. He probably should use a walker but we have gravel driveways and a few steps in the house so I've not tried a walker yet. I wanted him to get surgery 15 years ago when it was first suggested and he refused. And refused, for years, denying that the knee pain was that bad. Maybe early stages of Alzheimer's masked it? Having watched my motivated cousin recover from surgery in one knee, there is no way someone with dementia could do what is necessary. I just accept that at some point he won't be walking, but that happens with Alzheimer's patients anyway, for various reasons. My short term plan is to go to some dementia specific PT to learn what else we could be doing to keep what little mobility he has!

you didn’t mention what stage your DH is. My DH had very bad knees. He walked with a cane. When he went into memory care he couldn’t learn to use a walker. PT & OT visited him 2x and said he would not benefit from it. He couldn’t follow directions. This disease can progress quickly or take years but I would not put my loved one through surgery of any kind due to anesthesia and hospital stay risks. I stopped all unnecessary procedures like colonoscopy. I know it’s a difficult decision.

@justbreathe2

Does he have a knee brace? I custom brace might take some of the weight off the joint which should help. Even an OTC compression sleeve might help somewhat.

HB