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My mom (78) was diagnosed with Parkinson's Disease about 10 years ago. Her health slowly declined at first, but in the last year it has declined very rapidly. She is at the point now where she needs physical assistance to: dress, clean, bathe, toilet, get in and out of chairs, walk, eat, medication, pretty much everything -- I can't think of anything she does for herself. She is very unsteady and falls often (though luckily has never broken anything), and also has very severe swelling (edema) in her legs and feet. And beyond her physical needs, her mental state is very poor: she has hallucinations, panic attacks, aggression, sobbing, confusion, forgetfulness, mixed up speech, etc.


Currently, she lives with my dad (72) who is her primary caregiver. At one point, I tried to encourage them to move to assisted living together so they could stay together and she could receive more care, but my dad didn't like the idea and instead bought a split level house, in which they live in the small downstairs "mother-in-law" apartment, and rent out the upstairs to my sister. My dad is very stubborn and prideful and in quite a bit of denial and insists he can handle it and they'll just get "in-home" care so they can stay there until they die (basically). And since she is unsteady, they no longer try to get her into bed and she sleeps in the living room, in her recliner chair (which she also sits in all day.) The apartment is small and dark and they rarely open the blinds. I feel she is also very depressed and bored.


They finally did get in home care now for 5 hours a day/5 days a week, but I don't feel it's enough. They mainly help with cleaning the house and laundry. They do help bath her, but my dad still does all physical transfers and assistance. She is not light and I've strained my back several times trying to assist her out of a chair or to the bathroom. My dad already has bad shoulders, with surgeries on both of them and shouldn't be lifting her as much as he does. I feel her care at this point is much more than my sister and I can help with and much more than my dad should be doing as well. We are all tired and burned out.


My question: I believe she probably needs to move, I think she is way beyond the point of keeping up with care at home. But I feel my dad will disagree. But I still wonder, is moving her the only option we have at this point if she cannot do anything for herself? Even if we increase her homecare to 24 hours a day/7days a week, will she get enough care that way or would she be better served in a memory care facility? If so, I feel sad separating them and moving her by herself, but what else can we do? Any advice would be greatly appreciated! Thank you!

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1) no one in a small MIL's apartment needs cleaning and laundry for 25 hours every week! I'd start by contacting the agency and making sure they're doing more than that while they're there. If they are companions then I'd ask what they do to entertain your mom. I have an agency companion for my 2 aunts and she plays games with them, chats, watches tv with them, does light housekeeping and meal prep, takes them out for walks and helps them run errands.

2) a person who is a fall risk (like your mom) requires an aid with a different qualification level from the agency than a companion, which translates into a higher hourly rate.

3) is your sister helping them at all? I can't imagine she isn't if she lives above them. Does she have any involvement (that your dad allows)?

4) who is your mother's PoA? If it is no one, or your dad is her PoA, then you will not be able to legally make them do anything they don't want to do, no matter how much you think they need something. You will need to wait for the inevitable crisis and then call APS. Or, you can pursue guardianship.

Do you think your father is also slipping into cognitive decline? Or depression (which can look a lot like dementia in the elderly)? Perhaps he needs to go to his doctor for check-up. You will need take him and discretely pass a pre-written note to the staff telling them who you are and outlining your concerns for his mental/cognitive health. You can use a "therapeutic fib" as a means to get him to this appointment (like, "Medicare now requires an annual physical in order to receive benefits") It is not wrong to employ this tactic if you're worried about their wellbeing.

You could sit down with your dad and go through the math of expense. In reality, 24/7 in-home care with higher-qualified aids will eventually cost MORE than a facility, and be a pain to manage. You should be aware that it is important for them to qualify for Medicaid, and know what the "look-back" period is on your state's application. Their finances need to be managed in a way that will not cause them to be delayed or disqualified. Maybe see if you can get your dad to an appointment with an elder law attorney who would be a neutral party in making the case for getting their affairs in order now. But, if your dad is really in cognitive decline himself, this won't be easy. "Stubbornness" is symptom of dementia. Please watch some Teepa Snow videos on YouTube to get a sense of how to recognize and engage with LOs who may have it. I wish you all the best.
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You're right! This is way too much for your dad to handle. He needs more in house help with your mom. It would also be really good for him to use some of that time to do something for himself. Get out of the house for a few hours!

I agree with other poster about getting him evaluated to make sure he's ok to be making these decisions for both of them.

If he is capable, maybe you and sister need to back off a teeny bit to let dad feel a little more pressure and then he may be able to agree that they need more help or that mom needs a placement.

Sorry that she is so impaired with her Parkinson's. It is a terrible. Lost my great uncle to it last year.
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