@LVKris, thank you! Reading about positive outcomes definitely is good, too.
Still a bit mystified by the lack of board and care homes in my area.
So sorry for everyone’s struggles. @TheGreyKing, my sympathy and empathy. My dad died 4 years ago right after my daughter’s accepted student weekend and I remember the burdens of his and my stepmother’s final years, coinciding with my daughter’s high school years. Yes, do go to New Paltz if it won’t stress you out too much. It sounds like you are very grateful for the help from the family members. My guess is that they will get along while you are gone.
@rosered, I was also cheered by LVKris’s report. I had knee replacement surgery a year ago May 30 at age 70 and although it was hard, it was definitely worth it. My dad had spinal stenosis at age 87-89 and was in terrible pain for almost two years, with no relief. He had several sets of steroid injections that did absolutely nothing and pain meds strong enough to make a dent made him impossibly loopy. His doctors were reluctant to do surgery because of his age but he breezed right through it and came home after a few days feeling amazingly better. But he was very, very tolerant of pain (I knew it was bad because he mentioned it, which was very unusual), and he was in good shape, ate well (cooked for my stepmother and himself even when they later got aides at home) and very motivated and cooperative.
Maybe consult with more than one orthopedic surgeon and question them carefully about her age, condition, and prognosis with or without surgery?
@rosered Mom was 83. But she was already behind the curve on being able to live alone mentally; IMHO she should not have been for more than the year before. She fooled other people. Physically, she bounced back from the surgery like a champ. There were days I thought she only had the surgery because her best friend had had it…
One weird thing about her dementia and pain is that toward the last two years, she forgot that things hurt. She fell and broke her arm, up high so they couldn’t cast it, and she fought her way out of the sling every day. That HAD to really hurt, but she kept saying it didn’t.
My neighbor (who is maybe 70) had knee replacement surgery two years ago and has not slowed down one bit. She still does ballet once a week. And just got back from walking the camino Santiago as a tour guide…100 miles or so. She is glad she did it.
They are doing a second surgery on my mom tomorrow to correct a problem caused by the first surgery. Arrgghh!
Sorry @TheGreyKing, but maybe they will fix whatever is causing your mom such excruciating pain. Sorry things are so very challenging now.
For knees and other joints, an amazing alternative to surgery that my daughter has had twice, with miraculous results, is platelet rich plasma or PRP, a form of prolotherapy. Feel free to PM me if you want to know more.
I wonder what sleep meds your parents are taking/have taken. My mother took Lunesta for years. I didn’t even know about it until she went into AL three years ago. The hospital took her off a few months ago. She was having some bad nights so I put her back on PRN. She cannot cognitively handle PRN and perserverates about it,. Constant phone calls to me about whether she is having “that pill.” A nurse suggested they go in at 11 to see if she is asleep and give it to her if she isn’t, so my mother stays up until 11! I tried explaining to her that she was not taking anything (of course she has no memory) and that the intention is to help her on nights when she cannot sleep, but with her dementia, it is clear it has to be every night or none at all.
I would like to find something she can take every night without the drunkenness I have observed on Lunesta. She is a fall risk with Lunesta and I really think it makes her memory worse, an she sleeps in too.
Trazadone? Anyoe use Neurontin/gabapentin for sleep?
Alternatively I can just tell her that she does fine without meds and go back to that. One or two nights week she would call the nurse at 1 am and they would give her Tylenol, which worked half the time as a placebo.
ps she leaves her room twice a day for meals and is actually overweight-no danger of starving at this point
My mom reported at the recent medical appointment that she has trouble falling asleep nearly every night. I think that the hydrocodone (or similar med) that she is prescribed for the knee pain sometimes helps her fall asleep. Obviously, this isn’t an ideal situation for anyone, even her.
Some folks find antihistamines like Zyrtec sedating without drunkeness. Melatonin is a “natural” sleep aid. Camomile tea?
I should add- a sleep med that doesn’t worsen dementia…
I have not heard the antihistimines worsen dementia, nor melatonin nor camomille tea. Good luck!
I have a few residents that do have minimal to moderate pain, and they take a narcotic pain pill before bedtime (PRN but they do it every night).
I knew a lady that had her first knee replacement in her early to mid-70’s. in her late 80’s they did a modified on her other knee - essentially cleaning up what was affecting her in that area and repairing what they could.
Many with dementia don’t remember they smoke (when in a smoke free facility, or where they have to go to a designated area to smoke and since they don’t remember they smoke are free of the habit).
Many with dementia surely have the aches and pains of aging but their neuro pathways don’t signal the pain for them apparently.
We have tried Tylenol PM, Melatonin, Lorazepam, and now seroquel. So far, so good on this one, but it’s only been a few days. Lorazepam was fine the first few days. She also has some seeing people who are not there when confused so that also triggers seroquel being a good one.
Well, elder has no memory or idea why he fell yesterday. He was quiet and tired today. He has a black eye and some scrapes from the fall. We aren’t sure if and how he will change any behavior or indeed what he remembers if the events of yesterday (ambulance and police).
The sleep issue is a difficult one. Seroquel and Trazadone are considered safer choices (mom and dad take both). But, the alcohol you’ve discussed earlier is a contributing factor and makes Lunesta so much more of a falls risk.
@HImom this used to be the problem with my parents. I would see them with bruises and scrapes and neither of them knew what happened. They never developed serious injuries. I just figured nothing I could do about it as they would never remember to use a cane or walker. At least at the CCRC, I knew a serious fall would be witnessed and the other spouse would know to ask one of the many people around for help.
Thanks all for the sleep aid suggestions. Dr.Google has info from studies that Benadryl (which is also in Tylenol PM) and melatonin are not good for elderly with dementia. Lunesta and benzodiazepines are addictive and don’t work as well over time, and of course cause fall risk. I suppose almost anything that helps with sleep will be a fall risk though!
I am going to ask about Trazadone at the MD’s.
I am going to find out if there is any way I can meet with the doctor without my mother there. Alcohol and sleep both need discussion.
I see bruises and sweliings on some days that would seem to indicate a fall but my mother doesn’t remember either. She IS remembering that something bad might happen if she tells the nurse she fell- or so it seems!
This is a little old but might help others:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC427621/
It looks like Lunesta is a good choice.
@compmom - Sorry for all you are juggling. Have you looked into gin without alcohol in it? No experience, though googling reveals options. Perhaps poured into her familiar bottle (and if medically indicated initially alternated with the diluted gin)? Seems like any measures that may clarify the sleep issues and treatments a bit could help. All the best.
Thanks yeah I bought some expensive non-alcoholic gin and she spat it out. I tried it and agreed with her! One of my friends works for a distillery and suggested it. The water is working 
Sometimes you can use dementia in your favor. She can’t taste, and she can’t remember arguments. Looking on the positive side!