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I’ve written before. My LO is suffering from Parkinson’s with Lewy Body. His condition is getting worse and so is mine. I’ve decided I need to either get home care or to put him in a facility. I can’t do this alone any more. He tries to care for himself but not always successfully, and his falling has gotten worse. I hurt my back getting him up last week so I’m having to use a cane right now. He has started physical therapy so I hope that starts to help soon.
I tried to get an appt with an Elder Law Atty but have to wait till Feb to get in. I’ve been calling our GP to get a needs assessment done but no one is available till after the holidays. I’m also not having any luck getting call back from a social worker to help. I finally wake up to the fact that I cannot do this alone, and it’s a bad time of the year to get help.
Any advice on what to do first? Should I try in home care first instead of going right to a facility? I feel guilty for leaning toward going right to a facility to give me a break.

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First thing if he falls do not try to get him up please call 911 or local police non emergency number for a lift assist.
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Call 911 when he falls do not pick him up.

Me, I would place him, you are in over your head, and at home care would not give you the relief you need.

My husband died of cancer, I tried the at home care, I can tell you that I wasn't sleeping 2 hours a night for months, he was screaming on and off all night. I had a business to run, it was a nightmare.

I owned a few rentals, I moved him to one with 24/7 care givers, then placed him in hospice. If I had it all over to do, I would have placed him months before.

That ended my in-home caregiver position. Never again.

Now have two in facilities, one in MC the other in AL, both self pay.

it is a perfect solution. They both are in nice facilities, well cared for and my brother and I manage their well-being from home.

We each visit them monthly and go there otherwise as needed.

Please at this point do what is best for both of you.
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It practically drives me off the cliff how people don't call back these days or do what they say. I'm sorry you're not hearing from the sociaL worker. You need help with your husbands condition. I say why not try home care first since it's faster to get started with. Then you'll have something to compare. You can always change your mind and go for the facility if it doesn't work. Be careful with your back.
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Please don’t try, even one more time to lift him again. It isn’t safe for either of you. Call 911 for lift assistance everytime it happens. The paramedics or first responders will lift him safely and assess him for injury that might need further care. We did this with many of my dad’s falls, he was always treated with kindness and dignity by the trained men who quickly came. You’re taking all the right steps except for the important one of losing the guilt. It’s okay to be sad over the situation, but your guilt is misplaced, for you neither caused nor can fix this. You’re merely a spouse doing the best you can in a trying situation, guilt is useless and can get in the way of you making good decisions. You’ll know in your heart and mind what place is best for both you and your husband, remember your wellbeing matters too. I’m hoping some of your phone calls pay off soon, be friendly but persistent. I wish you both peace
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olddude Dec 20, 2023
The next time she calls 911, have them take her husband to the hospital. Then tell the hospital that you are looking at placing him in AL, and ask them for help. They should be able to recommended a facility. At any rate, he should stay at the hospital until you can transport him directly to AL.
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You waited a little too long which is quite common. Well at least you are planning. While the chips are down, continue to be proactive. You have till February to see the attorney. Perhaps they have a cancelation list which you can ask about. Meanwhile start determining which facilities you wish to visit and begin gathering information. This also includes gathering the financial information you will need for the attorney. Even though you are waiting for a needs assessment, you only will need a doctor's form from your PCP to get him in a facility.
Keep working forward in small steps and you will be surprised how quickly you will get to the end goal.
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Many facilities offer short respite stays, that may be a way to give you time to heal and is a good way to test the waters for the future.
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You have done the right thing.
Now you have to wait for these appointments.
At the point that you cannot go on you are left perhaps with a call to his MD telling him you are injured (back) and cannot go on and need emergency Social Services help. You may end up in the ER with him with you.

Do in home care NOW so you can get through to the appointments. Then make it clear you cannot physically go on and you need full assessment so that you can place him in a facility. See the attorney as planned and be certain to ask for division of finances so he can get into care without tapping the money you will need for your own care.

You are on your way, but it's a matter of surviving until you have this started.
Meanwhile I as an RN have seen caregivers admitted with their loved one in tow, placed in the room or admitted, and that gets Social Services at work REAL FAST for placement, so if you need to call EMS for YOU then do so.

Consider a call to APS right now, emergently. Let them come; they may be able to expedite things and get faster help for you.

This serves as a warning to others attempting to do care they know they cannot sustain, sadly. I am so dreadfully sorry you are in this place. So very sorry for you and hubby. I hope you will keep us updated. IF there is ANY family or friend support or a faith community, please reach out now. At the least you need to have meals delivered, and etc.
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Penguina Jan 3, 2024
I finally got the needs assessment I wanted. The day before, my DH could not feed himself, fell twice, could not dress himself, and could not walk with his Rollator without stutter stepping and me holding him up with a belt. When the Social Worker came in, he was practically dancing with his Rollator, chatting, no tremors, no stutter steps. It was an amazing transformation. How is that possible? Is he faking how bad he was or is it common for patients to suddenly improve and “perform” for visitors? I was so angry. It made me look like a fool after all my complaints about his condition. The SW did not think he needed immediate intervention. She wrote down “minimal” tremors, “mild difficulty walking”. I’m so frustrated.
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You should do anything at this point to prevent yourself from injury. Even with PT people with Parkinson’s do turns or pivoting wrong.
My husband has Parkinson’s disease. It is progressing although slowly right now but there are signs of everything getting worse.
One time there was need for respite and SW said it would take few days to find facility. I called again saying that was not an option. Miraculously next day it was available.
Just try again, perhaps get some extra help for a few days because of holidays this week could be different, but insist there are two people in dangerous situation.
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Your doctor should be able to send in a VNA Nurse . Ask for a social worker to get involved from your Doctor and they have a Lot of Pull with Elder services and People who are covered by medicare .
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Home health only provides part - time help. The most help and relief for you would come through a facility but it will be heartbreaking as well a relieving. It would also be a large burden on the average family budget.
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