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.
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.
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!