Finding it difficult making decisions for my DH
The knee injections are no longer giving relief for my DH. It tires him to walk short distances. We have an appointment for consultation that’s moved out again to December. I know knee surgery is not an easy one.
This week he had oral surgery for extractions of 2 wisdom teeth, and one tooth. Difficult for him to follow instructions that I give him. The pain medication and antibiotic has given him terrible diarrhea that I woke up to a mess in bathroom into the living room. He argues with me and cannot remember what I explain to him 5 minutes ago. Then he is sorry and asks if I am mad at him.
I am sad for all of it. I wish he did not have this knee pain that is causing some hip pain now. I know it is going to be extremely difficult to handle him with surgery. I am hoping the surgeon will be honest with us. Wish my DH could walk without pain.
My appointment with a Geriatric doctor been rescheduled twice and she only works one day a week. We have shortage of doctors in our area. Hoping she could advise me. He does not want to go through surgery.
Comments
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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.
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A poster on another thread said knee surgery is often done with spinal anesthetic, so that might be OK. He still will have to be able to participate in the rehab after surgery, though. Can he?
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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.
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I've had both hips and both knees replaced, and the knees were agony both times. I would not put a dementia sufferer through it. Medicare does not allow a rehab stay for a single knee, so all the recovery would have to be at home. Following directions in physical therapy-including doing the exercises multiple times a day at home- is critical to a good outcome.
II would use narcotics for the pain as needed.
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@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.
HB1 -
My story is a lot like Harshedbuzz. I didn’t come home with as many meds ( 5 I think). I had to put ice packs on my knee every waking hour or two for 20 minutes. I had to get up and walk in my house every waking hour. I had to sleep on my back with my leg straight out for several weeks. They wanted me to able to straighten it fully. They don’t want you to sleep in the recliner in case your leg falls off the ledge. So I slept sitting up in our foam platform bed
I started physical therapy at the clinic two days after surgery. My surgeon wanted me to go there rather than have at home therapy. Plus exercises to do at home daily.If he can’t handle the pain medication and antibiotics for a tooth extraction, he can’t handle the pain meds and antibiotics for a knee replacement. There is a lot of pain.
Look, both my knees have been bone on bone for several years. The left knee was finally replaced in December after a couple years delay due to a back injury. The right knee is waiting for at least another 3 months from now because I just had a cardiac ablation and am on blood thinners. Is it painful to walk long distances? Yes, but I’m still a functional adult even with that. Please try PT and ice and NSAIDs for your spouse rather than a TKR.
@harshedbuzz Thank you for mentioning the occasional pain in your ‘good’ knee. I have that too and wasn’t sure it was ok. Until I read your post.
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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!
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Tucson Anne- definitely go the PT route for now and try to preserve that mobility. DH did and it has paid off. It's very important to strengthen the legs and the upper body. I had no idea upper body strength was so important because he has been able to pull himself up from his wheelchair using grab bars, pivot with help and use the toilet. This has been a blessing because he is a large man who is now, after over a year in a wheelchair, losing that ability to stand. I don't know if he isn't able or can't figure out how to do it but it's sad and getting more difficult to do toileting. Also agree with you about pain. Alz patients don't seem to be able to communicate pain and there's no telling how much pain they feel.
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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.
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Thank you Carl46 for your reply. A few neighbors have noticed his agony when walking dog. Unless you live with a dementia they have no idea what is involved in caring for him after surgery. Yes, with the oral surgery there are very few choices what he can eat. He has to eat very soft foods, and careful not to lodge anything in the cavity. Getting suggestions from a family dietician. Today a little better. He supposed to drink fluids too, and that has always been a problem to get him to drink anything. 3 days to go on the antibiotic!
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Yes, my neighbor who is a nurse suggested it, but what I learned from this oral surgery, he does not want to follow instructions, he forgets everything. Pain is too much for him.
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Thank you Frankay for your reply. It worries me he will end up in a wheelchair too. I would love to see him with less pain. He is not a good patient and it would add more stress on me. He had a torn meniscus tear surgery several years ago. Home from the hospital he felt great before the pain block wore off. He refused to listen and overdid it. He was in a lot of pain the next day. I don’t think he completely healed. If it were a shorter recovering period, it makes the decision much easier. But I know it is not an easy surgery.
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Thank you M1 for your feedback. Yes, I know it is a difficult recovery period. He gets an injection for a bad shoulder and the doctor gave him exercises to do at home many times. He will do them once or twice but won’t stick with it. I had rotator cuff tear several years ago. I exercise and religiously follow shoulder strengthening exercises and my shoulder is good.
Couple of weeks ago I bought him a seated stepper that was recommended, so he could work out with me. He is losing interest in it already.
Glad you had your knees and hips fixed. Wished my DH would had it done 3 years ago.
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Thank you Harshedbuzz. Yes, he did get the gel injection over 2 weeks ago. I was so hoping it would help, but the doctor was skeptical. He did not get any relief.
My DH has been good with me handling everything and most of the time listens. This oral surgery was an eye opener for me with pain involved in knee surgery and being able to handle him. He doesn’t remember. He was complaining about the pain, so I got him a Ibuprofen. He asked what is that for? I said for your pain and his reply what pain?
I appreciate everyone’s comments to reassure me that it would not be good idea to go ahead with the surgery.
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Thanks Quilting…I appreciate your comments. The meds would be difficult with what I see from the oral surgery. Glad you have your surgery behind you.
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Thank you Tucson…he told me a few days he will never use a walker or cane when discussing surgery. I am sure he will eventually be in a wheelchair. As much as I want to help him, I can see now it would not be good for him.
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Thank you SDaniel. The neurologist kept him at MCI diagnosis last June. Getting any help for my DH has been difficult in our area. We have an appointment with a Geriatric doctor in December.
I feel he is declining more this summer and a big difference from last summer. Following directions is worse. He forgets, or gets confused. It all worries me. It’s difficult keeping him busy these days. We started doing puzzles and it is the only thing that keeps him busy if I am doing something else. We do work on it together and he enjoys it. He has is own ways about placing the pieces and I just let him do his thing.
Yes, we spend a lot of time in doctors office and I am beginning to see that some are not necessary unless he is having discomfort.
Don’t think I want to put him through surgery. I will probably always wonder if I am doing the right thing.
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@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.
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yes, we have a sleeve and brace. It helps somewhat. Thanks!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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