My father is in the advanced stages of Parkinson's Disease with dementia. I've just been told that the funding that helps pay for in home care for my father is being cut/eliminated. My 14 year old daughter & I live with my dad as he needs constant supervision and help with daily hygiene and care, meals, everything. But I work full time and have had a caregiver home with him while I'm at work. After work & weekends it's me. For the past 2 years he was fortunate enough to get in this program from an outside agency available to "qualified" VA patients that helped pay for the caregiver while I was at work. He only has his SSI and we only had to put about 10% out of pocket for the caregiver and the rest went to his other medical expenses and needs and I pay for everyday/everything else for the home.
My dad is waiting a "decision" for a claim we submitted to the VA to have him full service connected. But until that is finalized, that is not an option to count on.
So now that this program is gone, at the end of Oct., I have been scrambling for ides... I will talk with my boss about working remotely via laptop access; or pay the caregiver out of pocket for the mornings & I work 1/2 days using my leave time to the 1/2 I'm out every day (until that is depleted); or use my leave time for full days until it is depleted then go on a leave of absence, which is my last resort because that would leave me without any medical benefits for myself & my daughter.
I've run this past my 3 siblings, a few "friends" and spoke with one of his dr's and his social worker. It just astounds me how outsiders are so quick to tell me to put him in an ALF or a NH. These are even more expensive than home care. Plus with the dementia, if he has too many "BAD" days, they will ask me to remove him. Then what? Besides, when I first started taking care of my dad and had NO CLUE where to begin or what questions to ask about care for him, I put him in a "specialized, secure" NH to get resources going, he escaped 3 times out of their “secured” wing, and he was literally out of his mind at that time due to medication overdosing/under dosing & too many meds, you name it. If I put him in a NH/ALF now, I will be getting those phone calls again. Those are not the kind of calls you want at 2am.
But how quick and easy it is to say to put your loved one in a NH/ALF when you don't even get down and dirty in the trenches. I totally realize caregiving is NOT for everyone. I get that, but to just dismiss someone because it would make life easy.
Whew… I needed to vent that out. Too much stress right at the moment. I love my dad very much and until he’s bed ridden (I know I can’t do this & would need outside help then) he is staying in his own home where he feels comfortable, familiar and is in his safe haven.