Should my husband be in AL or live at home?

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Should my husband be in AL or live at home?

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Husband has early Parkinsons and depression. He is pleased by the attention in the AL and has staff do everything that he is able to do alone or with help. For example, he is able to dress himself with minimal help, but will not if anyone offers to dress him. Now he wants to live in AL. Has said he does not want to live at home because there is no entertainment and he has to help with his activities of daily living. In several past stays in respite care, he has wanted to return home after a few weeks. He has always been indecisive. Do I keep him home with caretaking help part time or pay $84,000 a year for AL? After a few years, there will be little left for my care, should I need it. I can't find a compromise solution, and would love some input.

Care Decisions Parkinson's Disease Spouse

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Split everything down the middle and let him use his and you do as you wish with yours.

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If you mean split the money, could you give more details about how to do it?

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If you wish to have your husband live at home as independently as possible, call a Care Conference for you and his care staff. Explain to them that your goal is to have him return home and he needs to be as independent as possible. Respectfully suggest that if the staff are doing things for him instead of encouraging him to do for himself, he will never regain his independence.

I sense you are “on the fence”, so to speak, about where he should live. By stating that there is no “entertainment” at home and he has to get his hiney in gear and do for himself, instead of being treated like the royalty he apparently thinks he is, he has indicated he wants to stay where he is. It sounds like he’s been in respite care often. Is this because you repeatedly need a break from caregiving for him? If he wants not to live at home, so be it. Consult with an attorney so he gets what he needs and you are left with enough to care for yourself. But, impress upon him that the decision he makes is permanent this time.

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Ditto on consulting an elder care attorney to create a plan to protect your half. Medicaid has a "look back" of 5 years so you need to do this right away. You will need to spend a little on solid advice rather than pay a lot later when the Medicaid Grim Reaper comes looking for your unprotected assets.

Also, have you considered downsizing now as well? Who is there to help you as you age if your hubby stays in AL? How old are you and are you in decent health? You could consider being on the same care campus as your hubby but in independent living where there's lots of people like yourself and things to do. Just a thought...

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He seems willing to spend all the savings the two of you have on his amusement - what do you think you should do. As he could live for 20 or more years I personally would divorce him as he thinks so little of your needs and then he can do what he likes with his split which will soon be gone on his laziness and amusements.

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At first I laughed out loud at your suggestion, but then thought again, and it might be a dang good one. That would divide the assets at the least, and he could be where he wanted while the funds lasted. I had a friend whose wife due to a catastrophic accident was as good as dead but NOT dead and lived many years in a comatose state while he tried to raise their two sons. He had to divorce to divide assets at a point.

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Could a good adult day care and some in home care be a good compromise?

Many adult day care facilities have programs and activities similar to an AL, some even provide transportation to and from the facility so DH would have entertainment. Although the day care can be expensive too ($50-80 a day in my area), it's still a cheaper than AL, particularly if he only attends 3-4 days a week. One of the ALs in a neighboring town actually runs an adult day care unit too and offers preferential scheduling and pricing on respite stays for their day care members.

Some in home care to assist with ADLs like bathing and physical or occupational therapy (maybe on the days he doesn't attend day care) could support remaining in the home for longer too. Some of this care should be covered by Medicare and/or supplemental insurance (for the Parkinson's).

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Is there an Adult Day Care facility in your area for where your husband could go for some daily activities and social contact? There would be some cost involved, but less than an AL. Adult Day Care is typically offered only during normal business hours on weekdays, but even several days a week might give your husband enough activity and attention to help him manage the boredom and depression.

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Agree that you need to talk to an certified elder law attorney and encourage finding one who charges by the task not per question....You will spend on a fortune as well, though not as much, with daily home care. Around our parts it is a 4 hour minimum at approx $20/hr and I have learned the hard way even doing that can be tedious for the caregiver (you) because you must take care to protect valuables as well as remember to be very specific in what you want done. Many hired show zero initiative.

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If you got a price of 84k for minimal care, I’d look else where. My mother’s with medication, help with dressing, cleaning, 3meals and all the snacks she can eat, toileting help , etc, more than your husband needs is under 40k a year.
They evaluate her as to needs on a bi-monthly basis and encourage independence so if your husband is envisioning servants, he’s barking up the wrong tree lol

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That was my thought, too. My mother pays less than $84K for nursing home care, so that figure looks ridiculous for AL.

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Respite care and assisted living can be quite different. AL is generally more focused on long-term care, while RC (for my mom) was more focused on rehab. Some AL places do a better job with activities and socialization. And some places have adult “daycare” services - maybe a good transition?

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Adult day care may be part of the solution - if this was part of your budget, would you be able to do this some of the time? Are there other couples or a friend of his that you could have in your home perhaps once a week for a meal, cards, or board games? It sounds like he really doesn't need assisted living at this time. Not knowing the course of his disease, there will come a time when he really can't stay at home, and you need to prepare financially and healthwise for that. Agreed that you need to protect your future, too, as well as your well being now.

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You can both go together.
Some are Senior Retirement homes with meals and activities, like an AL.
And are set up to accommodate caregivers, and even hospice can come in, I am told.
If dH requires caregivers, maybe a two bedroom?
Some, I am told, have a buy-in, if you have a home to sell.

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Have you explored the idea of both of you moving to independent living (in a community that has assisted living also). You could sell your house and invest the proceeds in an annuity to pay for the IL rent. You could still bring in a bit a home care to your IL apartment and you'd both have all the social opportunities of the IL community. It could be a 'best of both worlds' solution.
Some communities offer home care packages to IL residents that have bundled pricing and they can often do shorter increments of care because they are serving multiple customers all at the same address (a big cost savings if the help needed is just getting going for the day and ready for bed at night).

An adult day program is another idea, but their typical customer is pretty frail and/or pretty far along the dementia journey. You could explore what's in your area. Maybe there's a more vibrant one.

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This is a sad story NH & AL are tooo darn expensive!!you are very SMART TO THINK OF YOUR OWN CARE IN THE FUTURE!! GOOD MOVE THERE!! IF IT WILL RUN OUT ALL YOUR MONEY then do not go that route .I see a lot of great ideas that people gave you ,and getting divorced is really truly something people must resort to because of medical insurance ....not that you have to but independent living is a great choice also ...

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That is a large chunk of money for an AL. Could you look elsewhere?

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You could try a part-time assistant at home and see how that works. If he sees that the help is available and will actually let someone help him, then he might be able to stay at home a little bit longer. If he refuses the help there, then it will be just a matter of gritting your teeth and leaving him in respite care and having them do for him what he needs done, then move him to AL when respite ends. I had my mom in respite for 3 weeks, and then when it became a full-time situation, I had to move her a couple of times before she finally got the message that I couldn't be there for her due to work, that I had to have help for her, that they would help her if she would let them do their job, and that this was the way it was going to be because she wasn't going backwards in time. Just forward, and things were not going to be the way they were when she was twenty years old any more. It has taken several years for her to accept that she isn't twenty any more, and she will NEVER be twenty again.

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Should my husband be in AL or live at home?

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