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My husband of 38 years has Parkinson’s and dementia, which has progressed this past year. A few months ago he started to have incontinence issues (mostly bowel) but we’ve been dealing with it satisfactorily. He says he doesn’t know this is happening. He knows who family members are, needs direction, and gets around ok except during “off” periods. I struggle with the decision to move him to memory care as I feel he’s best cared for at home. I have a caregiver 3-4 days a week so I can get out for errands, and more recently, some social activities. Of course private pay memory care is very expensive so that is another reason why I continue to care for him. We have good days and bad days and try to find joy in each day. I would like to understand when most of you felt it was time to move a spouse to memory care and how that transition went. Thanks.

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You seem to be doing well. Why don't you visit a MC facility. Then you can see if DH is ready for one. Some people are aware "I am not as bad as that person" and aren't comfortable in that situation.

Expense. You may want to consult with a lawyer well versed in Medicaid. Medicaid allows for splitting of assets. Your husbands split would go for his care. Applying for Medicaid when its almost gone. You remain in the house and have a car. You get all or partial of your monthly income (SS and pension) to live on.
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I think when his care gets to just be too much for you, then it's time to look into placing him in a memory care facility. You do sound like you have things pretty well under control for now, so like you said, just try and find the joy in each day, because there will come a day when you will wish that he was still here to care for. You sound like you're a "ducks in a row" kind of person,(like me)so trust your instinct if and when the time comes. God bless you.
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I think the most important thing to do is to visit all the memory care facilities so that you know what is available and what your "plan B" is going to be. Board and care places are quite a bit less expensive and, personally, I think some are very very nice. I wasn't concerned about the cost but I wanted a place that I didn't mind visiting; and I was also concerned that I find a place where the other residents were at about the same stage as dad... so I had a couple of choices in mind and could assess their demographics at the time we decided.

Only you can draw the line in terms of when is the right time. I told myself that when he became unambulatory and incontinent, that would be the line I would draw. I'm not a very "nursey" person and not very strong to help with transfers. His bathroom was improved as much as possible but would never work with a wheelchair and showers. Money, however, was not a concern as Dad had enough, and saving it for inheritance only meant I was saving a 1/7 piece for myself. It's different for a spouse because you are spending your own savings and have to think about your own future. If you think medicaid may be necessary (someday) , I would talk to an attorney now so that you fully understand your situation. And not all memory care places accept medicaid so that is also something you may need to be knowledgeable about.

In some ways, in home care with enough help is actually easier than memory care because you are in your own place, with your own routine and you know EXACTLY what is happening. All that control goes away when he goes to a facility. However, just a few hours a week of help so that you can do errands isn't enough. It's hard but you need enough help so that you can begin to make a new life on your own. Otherwise you'll burn out and become resentful. So I ALWAYS hired more help than I really needed and even more than I wanted. Often I would come home and let them leave early but it was nice to have the flexibility and coverage so that I could leave when I wanted to. Sometimes I just sat in the car and read... just to get a break. At some point, at home care is going to be more expensive than a facility and that also may help you decide it's time.

Now that dad is in memory care, I am seeing him decline much faster, so there is that because it likely happens to everyone once they are in a facility. Just the change in environment creates anxiety and agitation. And moving him later can be a bigger adjustment for him than now when he might actually enjoy some of the activities that are offered and included in that hefty monthly fee. And the longer you wait the less easy it is for them to really enjoy what activities are there. Dad pretty much objects to going to the activities most days and just sits in his recliner zoned out "watching" TV (but I don't think he can really watch TV). For a very social man, he never talks to the people around him or his caregivers. He tries to talk to me and my husband although he's no longer making sense. It's really enough for him that I come visit for about an hour a day and he also understood when I left town for a week and was OK. He "knows" me and is glad to see me but that's about it.

It's a very personal decision and for everyone, it varies. When you start to feel resentment, though, or that you are missing out on your own life, I would think that's another big boundary.

Parkinson's can go on for a long long time.... you only have one life, so don't give up too much of it!
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