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The incontinence and parkinsonism both seem to be progressing faster than dementia. In spring we could take walks, go to mall and walk on his own. Now he needs transport chair, uses DEPENDS constantly. Has been using Myrbetriq but it is so expensive.
I am so afraid of what will happen next. I can not pick him up, we live in apartment so not sure about hoyer lift. Thinking he will need to go to a home but will need to be memory care. But at present he still remembers who we are, directions to go places.


Everything sort of hit me tonight, I am so sad, scared

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A few things-consider getting a consult with a movement disorder neurologist to confirm that he has Parkinson’s, not a Parkinson’s plus disease. There are some closely related diseases that are very fast moving. It’s important to get the right diagnosis. If he’s falling a lot, you might need to switch to the wheelchair. I would recommend a hoyer lift. It is doable if you have some help at home but it isn’t easy. The neurologist should be willing to prescribe physical therapy and that might help a bit with strength and they can help you learn some techniques for transferring him. I use a gait belt and that helps. If at some point your husband qualifies for hospice, you will be able to get a home health aide that can help you. Parkinson’s usually doesn’t progress super fast so I think starting with a movement disorder neurologist is key in case it’s not Parkinson’s. You can do a google search to find one in your area. If there aren’t any, ask the neurologist if there might be another neurological disease at play here.
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I just have one short-term suggestion re the Myrbetriq. It works in a different way from the other drugs used for incontinence, and it's safer for people with dementia. The other meds are usually not recommended with dementia--but they may be effective IF Myrbetriq is not. Unfortunately, the one that usually works better, Vesicare, is also very expensive. It sounds like the incontinence is bothering your Dad as well as you, so perhaps it would be worth asking his urologist if he wants to try a different med. I realize that the incontinence is not the big problem; your father's general decline is. However, even if only for a while, you both might be able to get a respite from or lessening of the incontinence issues.
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Oh, I'm so sorry to see your news. It must be incredibly stressful. I don't have any experience with Parkinson's. I have read that it can progress at varying paces and you never really know how fast it will progress. Have you met with an attorney to discuss financial issues? I might also check to see if the Parkinson's association would have a referral to help with planning and options for help and care. I'd do it before things are too pressing, so you will have time to think and sort things out.
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I am also sorry you are going through this. My stepdad had 2 strokes and then Parkinson's all in his late 60s and it was very aggressive. My mom did everything for him - including moving him from bed to wheelchair to favorite chair and back again. Plus in and out of the car for doctor appts. My best advise for you, if you aren't yet willing to move him to a facility, is get help. My mom wouldn't accept anyone's help. Even after hospice came into the home, she still did everything for my dad. The only time she'd ask for help was when he'd fall and she'd call the EMTs. Help is important, more so for you even than your husband. Check with your local agency on aging. They can provide information and assistance.
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I'm sorry you're going through this, I went through it with my father. What happens is you go day to day where you think everything is OK and you and he are able to manage until all of a sudden you realize you can't and you need help and help fast and that kind of help is not so easy to get. He is going to need a nursing home, and most likely needs one now. I'm sorry. If you don't have anyone helping you with that process, it is very hard for most people to navigate on your own. If you're unsure what to do, please keep posting and the great people here can help.
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