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My husband was diagnosed by one neurologist with PLS which is a subset of ALS and another neurologist with a subset of Parkinsons. We still have no definitive diagnosis. His mobility is decreasing and has been for 4-5 years, There is no cure for either disease as you can only slow the progression with therapy and medication. He also had a stroke in 2021 which weakened the right side of his body, and he has rheumatoid arthritis. He began falling more frequently and is unable to get himself up. I can't help him up as he is 6'4" and weighs 260. Each time I've had to call EMS and he is taken to the emergency room for testing to make sure he hasn't broken anything. He has been hospitalized and rehabbed 3 times in as many months. I have to face the fact that the progression is taking place much quicker than I hoped for. There is also a cognitive impairment. his speech is slowing and becoming slurred.



I wanted to keep him home for as long as possible, but he will need 24/7 care which I can't do at home. I have been caring for him for the last five years with various health issues and I just can't do it any longer. I love my husband but he needs to be safe and well taken care of. He was discharged to a skilled nursing facility for rehabilitation. Each visit has provided me with more clarity regarding his needs. Up close the deterioration didn't seem as drastic. But the visits, watching the health care professionals handle and maneuver him has shown me, he needs more than I could ever provide at home.



I want to know your thoughts on the various options for his long term care. I am looking at residential homes and nursing facilities. Any experience that can be shared would be greatly appreciated.



Thank you for your consideration.

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Can you consider a couple of consultations with a professional care advocate? A good one knows what facilities are really good. You will still have to go out and visit them knowing your husband's needs
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Ask everyone in your area for names of places in your area. Ask doctors, nurses, social workers, friends who have placed family members, clergy members, veterans, if he served in the military, there are VA homes, etc.

Research on your own to see a list of homes that are in your area. Then go and look at them yourself.

Listen to what people tell you, what they like and don’t like about a facility.

Judging by his ailments, I would think that he needs to be in a skilled nursing facility.

Go visit at different times of the day on different days. Speak to family members who are visiting if you can.

When my cousin was looking for a place for my uncle she asked someone that she knew who works in a skilled nursing home how to select a place. He told her, “Look to see if the staff is busy attending to the residents or if they are chatting amongst themselves in the hallways.”

Look at reviews online, but take them with a grain of salt. Form your own opinion according to what you have witnessed.

Wishing you well in finding the best place to place your husband. Have peace knowing that you are doing what is best for both of you.
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I have a friend in much your same position. Her husband’s care was doable at home for a long while, until a fall caused a nasty hip fracture that was a game changer. He has Parkinson’s along with some other diagnoses and complications and is quite tall as well. Her husband lives in a VA nursing home now for about the last year. It’s about a two hour drive, which she doesn’t love but has chosen to handle positively. He has received excellent therapies and care. He’d definitely rather be home but has also enjoyed having “the guys” around to swap stories with and share in activities. They’ve both really made the best of it. My friend told me a week ago that she’d had a moment of thinking of moving him back home, but then watched the staff in action caring for hubby and it snapped her right back into well knowing it wasn’t possible at home anymore. Definitely look into the VA if that’s an option and always know that nothing beats a personal visit to a place you’re considering, especially an unscheduled one. I wish you the best in finding the best situation
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Residential homes = are you talking about Board and Care homes? Do they take LTC residents? I don't think they take people who need more than personal or custodial care (ie, nothing medical). Hoping others have an answer for this, or please provide a clarification.
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