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Mom has had a rough time lately. Dementia that is progressing, at least partially due to a fall giving her a broken foot bone, a bout with ischemic colitis (which has resolved), and another fall which was unremarkable (besides the 7 hours in the ED getting checked out).
After broken foot, had rehab to get her stronger and was able to return to AL.
After colitis attack, she's still in rehab. I've been arguing with the staff about getting her back to her room sooner rather than later. Mentally and cognitively she does much better in her room than in rehab. As of last week (before most recent fall), she was making the goals of being able to walk far enough to get to the dining room and to descend a set of stairs in the event of an emergency. They are reluctant to let her go because they could still work on things like her poor balance. That is very subjective and I feel like they are mostly just double dipping since we're paying for AL AND for rehab (Medicare paying for that).
She fell in her rehab bathroom because her memory is swiss cheese due to her dementia and she is not able to remember the constant reminders for her to call for help when she wants to get up to go to the bathroom. They, pretty understandably, don't want her to fall on their watch. You can only imagine how many times she gets up alone and does her thing. And surprisingly it took a few weeks before she fell, on the cusp of moving back to AL. I'm sure they're going to push to extend her again.
Now she is saying she just wants to give up. Not for the first time. Last time I told her that she could do that if she wanted and that would mean that she'd have to go to a nursing home and would get more care and wouldn't be expected to do as much for herself as she is in AL. She didn't really jump on that idea so I let it pass. Now I guess I'll give her the same info and see if it at all appealing to her.
Not sure what I should push her towards. Or as POA, I can work with the staff to decide if her AL days should just be over.
Or thirdly, she might even be ready for memory care. She's not a flight risk at all and is still pretty social. So I kind of feel like being with people that are REALLY far gone in their dementia journey might not be the best fit for her.
Thanks for reading and perhaps having any insight or kind words of encouragement. I'm pretty burnt out on all this! Of course her last two episodes have happened while I was trying to have some time away. One trip got truncated because I thought she was dying and this weekend away just got a nice dose of stress added to a relaxing time. Oh well.

My mom was is AL for 11 months. She became a two person assist. They put her on the PT floor to get stronger. Mom asked how much stronger do they expect her to get? They told her she had to get stronger to get back to her apartment in AL… my mom said she was over it being in the apartment. She was moved to the 3rd floor of Skilled Nursing…she had the best 2 years there. She made friends, was very involved in activities after the move. It was a good move for her.
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Reply to LisaNJ
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againx100 Aug 5, 2024
Thanks Lisa. I am starting to think mom might very well be happier when she has less expectations upon her.
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My penny's worth is to stop pushing.
You're wearing yourself out, so it might be time to accept the inevitable.

Also, there is no perfect solution - you could get your mum to the point where she can go back to AL only for her to fall again, or not remember things she knew just a short while ago, such as how to find her way around or how things work.

So, go with how your mum is right now, which is someone who needs more care than an AL can provide.
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againx100 Aug 5, 2024
Thanks for your response. Brought a tear to my eye. Because I realize that you are probably right. I have backed off a bit. I am very aware that she will fall again. I need to start counting!! It's been a lot. And amazingly rarely gets hurt at all. I need to start a convo with someone at her facility about the future. Fun, fun.
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I think if dementia is involved these are decisions that you make for her given your best guess. Consult with her team in a care conference at the facility. Do know that most falls in the elderly are due to the brain and its inability to balance properly. The falls are likely inevitable. Do be certain, given the level of exhaustion with life you mom is experiencing that you error on the side of her COMFORT and happiness, as she is best perhaps now with palliative care and comfort care until the end. Falls often bring on the end for our elders now that pneumonia, the "old person's friend" is off the books and easily cured.

I think you know your Mom and her comfort and wishes best. I am comfortable with your making this decision with her input and the input of the care team.
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Reply to AlvaDeer
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In this situation, my mother was evaluated by the AL nurse and deemed unfit to return to her apartment in Assisted Living. Between her dementia worsening, and her mobility issues, she was unsafe to live in AL and had to move to Memory Care Assisted Living across the parking lot.

I suggest you stop pushing your poor mom to do anything now. She suffers from dementia and should not be expected to climb or descend stairs to evacuate a building in an emergency! In reality, she needs Memory Care Assisted Living and that may be exactly what you're told when an evaluation is done on mom after rehab. There is only SO far she'll progress in rehab because of her limitations and inability to remember instructions.

Memory Care shrinks down her world FOR her and removes expectations OF her while still offering activities and interactions with others. She's likely to stop feeling like "giving up" then because nobody will be making unrealistic demands on her anymore.

In any event, the nurse at AL is definitely going to evaluate your mom before she's released from rehab anyway, so all this is likely a moot point.

Best of luck to you.
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againx100 Jul 29, 2024
Thanks lea. I have been wondering what will happen when they evaluate her to go back to AL. I know there are lots of people in her AL with different levels of dementia. I did talk to a nurse in AL about mom's decline and she said they try to keep people here as long as possible, even with their dementia worsening. BUT that can only go so far. I wonder if their memory care is full and that's why? I'll have to ask. Thanks for your response and as always, you are spot on.
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IMO when our LO keeps forgetting their mobility limitations is the most challenging. You've been on this forum for a while so I'm assuming you're familiar with lealonnie1's experience with her Mom falling in the facility 95 times over the 5 years she was there. No once can be legally restrained. There are strategies for keeping them from getting out of bed, like a lowered bed, concave mattresses, etc. but nothing (that I'm aware of) to prevent them from getting out of chairs... even wheelchairs.

My 100+yr old Aunt with advanced dementia and mobility issues (and cared for in her own home by family) shimmied past her bed boundaries one random night and fell and broke her hip. Due to her advanced age and uncooperativeness, we waved surgery. We were trying to get her to at least pivot in rehab so she could be more easily assisted, but she was already still trying to get out of bed by herself in rehab. I was 1 day away from having her assessed for placement before she thankfully passed away in her sleep. The dilemma was that she needed LTC but was still "mobile" and was absolutely going to fall again. I had no real solutions, except to expect her to keep falling in MC until she could no longer physically get up. The good Lord solved my problem for me. But I totally understand your dilemma. I think one answer would be MC and realistic expectations about her risk of falling again.

May you receive clarity, wisdom and peace in your heart as you make decisions.
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Reply to Geaton777
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Againx, I get a sence your mom is just tired. Who can blame her

I would talk to her, but don't forget she has dementia, so she will most likely keep changing her mind. Probably according to her pain, if she is having a clear moment she may have a different view than when she isn't and her pain is more pronounced. Your mom is aging and it sounds like your mom is having one issue after another, she may get a break for a month or 2 then I suspect it will be something else.

I would definitely talk to the staff, ultimately this is your decision,
I would say follow your gut , your instincts, I'm feeling are thinking NH.

Also, you need a life , you need to go on a vacation, and enjoy yourself.

As for MC verses NH . Im not educated enough to have an opinion for that

Best of luck. Let us know what you decide
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Reply to Anxietynacy
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Have you visited the Memory Care unit? You are assuming that they are all “REALLY far gone in their dementia journey” and M would be out of place. You may be right, but there may be a subset of people she could relate to, with issues much like hers. Worth checking?
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againx100 Aug 5, 2024
I've been in there a couple times (some were quite a few years ago) and I guess it could be the bad ones are the ones that stand out and are memorable. Maybe I should ask for a tour. Thanks.
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I agree with others who say you might be able to get her back to AL and it’s natural that she would hope for that (for things to get “back to normal” or where is most familiar) but it will only be a matter of time before yet another setback.

My FIL was in an AL for about 3 years. No stairs in his AL facility, but their rule was you had to be able to get to the dining room on your own whichever way (Walker, wheelchair, etc). The last year, he had 3 major falls, each followed by rehab. During the third rehab the AL told us they could no longer keep him safe and he would have to go to NH which was actually connected to the rehab place. He had argued against it previously, but when it happened he adapted quite quickly. He died two years later from a heart attack while eating tira misu in bed.
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Reply to Suzy23
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againx100 Aug 5, 2024
Thanks. I think the writing might be on the wall here. She is super confused with a UTI right now so that has thrown a huge monkey wrench into the equation.
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Ask yourself do you want to be pushed? Be told what to do? At a certain point extending someone’s life is for you not them. Our care is so good we can keep someone alive but is that the quality of life they want. Perhaps they do not want to fight the fight. Early discussions and advanced directives are a must
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againx100 Aug 5, 2024
She's in rehab right now. She was making good progress and an inch away from getting back to AL. Then a fall. Now a UTI. So, she's always wanted to get back to AL but it might be time to just say no more. We have an advanced directive and these current issues are not life threatening but will be life altering. I did follow the directive in June by saying a hard no to a major surgery that would have left her with a colostomy bad.

Thanks for responding.
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You could get PT and OT done in the AL. I agree, Rehab in a facility does not help with Dementia. When my Mom went into Rehab I told them there was no money passed those 20 days. I was pinching pennies keeping her in an AL. They released her in 18 days. Then saying she could not follow instructions and she could not remember her exercises from day to day. Duh, she had Dementia. I swore then I would never allow Rehab again. Its not a prison. You can tell them no more rehab. That Moms Dementia is getting worse because she is out of her enviroment.

Talk to the AL director and see what they think about bringing Mom back to the AL and having PT, OT brought there. If they feel she would be better served in an SNF then thats what it need to be. Mom can get therapy there. But this broken bone has probably changed things. They are good until they aren't and anything like this usually changes things.

Be aware that after 20 days Medicare only pays 50%, the other 50% is Moms responsibility if her secondary does not pay. That can mount up.
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Igloocar Aug 5, 2024
JoAnn, if she is in acute rehab, she's probably getting over 5 total hours/day of rehab. If they send PT/OT to her AL, it could be about 3 total hours 2 or 3 times a week. In reha--where I've been a couple of times--a small number of people are together with the therapist (usually plus an assistant), and the therapist can focus on 1 person while the others are doing their exercises, so it's possible to cover a number of people efficiently. In addition, they may have specialized equipment not available elsewhere. Also, what Medicare covers in terms of rehab therapy will be more extensive than fo in-home therapy. I did not like being in rehab myself, but if I hadn't met the rehab goals, I wouldn't have been covered for additional at-home PT/OT, and eventually away-from-home therapy. You have to "graduate" from inpatient rehab to get in-home PT that has a goal beyond maintaining the status quo.

I understand and agree with most of what you say what you are saying about the advantages of the home (AL, in this case) environment over being in an unfamiliar, institutional environment. However, Medicare would here have to agree to cover in-home therapy without the goals of rehab having been met. Rehab has the goal (among others) of getting you to the point where you can function with in-home PT/OT. That goal so far isn't being met, and it sounds as if the OP's mother is going to have difficulty inmeetin it.
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