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.
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.
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.
Keep working forward in small steps and you will be surprised how quickly you will get to the end goal.
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.