He is 80 and he no longer can work the TV, computer, phone, anything electronic. He can't pick clothes out, make a decision, problem solve, shave, brush his teeth, cut his food up, shower by himself, He sleeps all day in his chair, His appetite fell and now his doctor added meds to increase his appetite. I look at him and no longer know him. The disease has robbed him of everything but me. He is scheduled to be reevaluated in May. Yesterday he lost his balance getting out of bed and crashed into the wall. He keeps asking me what is going on (because of the virus). He has some moments, not few, of being in the here and now, but not many. I need to take steps to get help at home but don't know where to start. Until my husband doesn't know who I am I want to keep him home. I need some time for myself. I am his only caregiver. Most days I just want to run away.
I made checklists, as most of them all seemed to have the same spiel and failed to address questions and issues I considered pertinent. I also asked for a copy of their standard contract. Some readily cooperated; others refused. The latter category were eliminated immediately.
Absolutely, totally the best company I found agreed to discuss contract terms, which we did, and resolved the issues. I was ecstatic that we were ready to go forward until the company internally discussed the issue of dysphagia and declined to become involved b/c of the aspiration and choking potential.
The marketing and management staff weren't as concerned as the nurse who interviewed us; it was her position that someone with dysphagia was too dangerous for them to provide care.
This is a real challenge - finding good people and a good company, with reasonable terms and conditions. Be sure to read their contracts thoroughly and get legal advice if you don't understand the terms. I found a lot of "weasel words" - tricky provisions which benefited the companies but not the clients.
Take breaks frequently when you start calling and interviewing, as this can become very tiring and emotionally challenging.
I do wish you the best of success, and hope that you find a company which meets your needs.
Start with the local area on aging. They can direct you to services that can provide free assistance.
A lot of charities offer companion sitting, the volunteers can not do any hands on caregiving, but can feed a meal thats been left and be with your husband while you go get some you time.
If you can afford help, google in home care and call the agencies in your area to find how they operate and what they charge.
Such a difficult time right now for adding any new services. I wish you the best of luck getting a break soon.