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My 87-yr old dad was diagnosed with Parkinson's two years ago right after my parents moved into AL. He also has dementia as does my mom so they moved to MC a little over a week ago in the same facility. They are quite content and have adjusted very quickly to everyone's amazement. Dad was actually doing well mobility-wise until about three months ago. He has rapidly declined in both mobility and memory which precipitated the move to MC. He has tried a standard walker but has not been able to use it successfully. It seems that managing both the walker and his feet is only making things worse. He started new meds a little over a month ago and it seemed to help for a few weeks. Late last week, after having his bi-weekly physical therapy, he seemed to be much weaker and couldn't get around at all. Since then, he has used a wheelchair to go to the dining room or other areas in the unit. The nurses tell me he is usually ok for the better part of the day as far as getting out of his recliner and making his way to the bathroom. However, since that last PT, he has fallen every evening, only hurting his pride, he says. The staff is willing to help him to the bathroom if he finds he is having difficulty but he doesn't remember to ring them (nor does my mom understand that he needs help now).



My question is actually two-fold. Does anyone have any hints on how to get him to understand he needs help to get up and down now and that he must ring for a nurse? I've tried signs in their rooms for other issues over the last several months but they didn't really work. My thought is that nothing will really help given his dementia but never hurts to ask.



Second, are there options for MC that might provide additional assistance? I got an email from the head nurse today to have a discussion but, given a brief conversation we had last week, I suspect she is going to suggest he be moved to skilled nursing. Other staff members disagree and suggested adding hospice or pallative care.



While both my parents have dementia, they are still aware enough to realize if they are comfortable somewhere or not. In the last week of MC, many anxieties they had in AL have disappeared with the increased level of care. That has been a huge blessing so we do not want them moved again. And, yes, they go together wherever they go so they won't be separated.

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My mother had dementia and lived in Memory Care also. She fell 95x in total during her stay in AL and MC combined!! No real bad injuries as a result, believe it or not, came of those falls. She was wheelchair bound for the entirety of her 3 year stay in Memory Care. The staff toileted her every 2 hours; so they would come get her in the Activity Room and ask her if she needed to use the bathroom? They'd take her in there, even if she said no, to see if her Depends was wet or if she felt the need to urinate, etc. That helped with the falls, but when she was in her room, she'd go to the toilet herself and fall OFF of it! The protocol at the MC was the staff would check on the residents every 2 hours, w/o fail, so they'd find her on the floor and help her back up. I could have hired a caregiver to sit with her, but we could not afford it...........the cost of MC alone was burdensome as it was. I did NOT want her to go into Skilled Nursing, much as you don't, b/c her quality of life was good in MC.

NOTHING works to get a dementia patient to realize they need to pull a string or ask for help. Not signs, NOTHING. I know, I tried everything and not one single thing worked to get mom (or dad for that matter) to call for help EVER!

If the head nurse starts in on you about wanting your folks to go to Skilled Nursing, I'd ask her what the purpose of MC is in the FIRST PLACE if not to help your folks with toileting??? Put up a fuss, in other words. Ask that dad be toileted on a regular basis by the staff, first of all. Tell her you cannot afford 'extra help' so that's not an option, but placed your folks in MC with the express understanding their needs would be MET by the STAFF there.


Then, look into hospice care; ask dad's PCP for a referral; he might be at the point where he'll be accepted. That's what I did with mom b/c I knew in my heart that she was dying and had little time left on Earth. First she was denied in November. Then I spoke with her PCP again in December and she wrote another referral for hospice. I spoke with the hospice nurse directly who was doing the evaluation, and told her mom was great at showtiming, but that she was declining steadily for a long time. The nurse agreed and she was accepted into the hospice program in Dec of 2021. Hospice provides an extra layer of help and the MC is happy for it; they normally back OFF when hospice care is on board and agree to keep the residents until death. (That's what happened with my dad when both of them were in AL and they wanted to kick him out to a SNF; once I got hospice on board, they KEPT him until death). So mom continued to decline and suddenly took to her bed one day in February (2 months after hospice accepted her) and passed away 1 week later. Hospice was wonderful; they brought her a better wheelchair which she didn't fall out of, a bolster for her bed which prevented her falling out of IT, a hospital bed, supplies, all free of charge and billed to Medicare. They also kept her comfortable the entire time she was dying. For that I am eternally grateful. They did the same for my dad when he was terminal.

The only way I was successful in keeping my parents together in AL was to get hospice on board to KEEP dad at the AL in the apartment with mom. Otherwise, I was faced with shipping him off to a SNF and having mom in the apt at AL! UGH. See what you can do here. I was faced with $20K extra a year to hire an aide, which wasn't doable; but hospice did the trick.

GOOD LUCK!
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onlychildnc Aug 2022
This is very helpful, thank you! My parents are in fairly good shape otherwise considering they are 87 and 85, but given how rapidly my dad's Parkinson's has progressed over the last several months, I fully understand the disease is more advanced than I realize. I will ask his neurologist on Wednesday about a hospice referral. I've read on several posts about loved ones with PD falling constantly, much like you describe with your mom. I don't blame the staff because they check on them much more frequently than every 2 hrs. I have gotten word they are ordering a special mat for him that will allow him to stabilize his feet when standing and the PT emailed to say they are rearranging their furniture to allow him more of a straight shot to the bathroom.
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Your last paragraph contains the answer. If dad understands he’s most comfortable where he is, do what Burnt has recommended and say that his stubbornness could mean an end to all that including being with mom. One bad fall=potential end.
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You are right, nothing will really work. It’s not that he won’t remember. It’s that he can’t remember. The best people to advise you about your parents’ issues are the professionals where they live now. I wish you the best.
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Dad needs to be toileted on a schedule, i.e., someone shows up every 2 hours or so and says "It's time to use the toilet".
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Dad should now be wheelchair-bound. People don't end up in wheelchair solely because they have a fall or "can't" walk, but sometimes simply because they shouldn't walk anymore. That was my mother's case, so Dad moving from a wheelchair to a recliner shouldn't be a thing any longer. Take the recliner out of his room.

He shouldn't require skilled nursing, and the MC should be able to handle his needs where he is.
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