Hi All, I'm 50, single, and have lived with my father for over 10 years. We live in an apartment and share rent and expenses. Its been helpful to both of us as he gets a little less than $2000 month from SS and we get along well and keep each other company. The problem is he's been declining over the last 5 years, exhibiting signs of Parkinson's. After doing some research, I think he actually may have Lewy Body dementia.
The neurologist doesn't really tell me anything as far as diagnosis but my father definitely shows signs of dementia. He can't tell time anymore, doesn't know the day of the week. He needs more and more assistance getting to the bathroom and has fallen a half dozen times. I have to work 6 days a week, long hours (retail) so he's alone during that time. Up until recently I've felt he's been OK , but now I realize he needs someone to look after him when I'm not home. The doctors he sees haven't really been helpful. Both of them sent out the hospital home health care nurses, but all I get from them is "we can't help you", Medicare doesn't pay for our services. Why would these doctors send these people out when they can't help? We can't afford to pay for private help. So I asked the nurse from home health services what I should do, call nursing homes? and she said yes but in unsympathetic tone she said "yes, but let me tell you they cost on average $13000 a month and want the first months deposit upfront". Well of course he or I don't have that.
My father is on Medicare with Medicaid but not full Medicaid. I'm not sure how that all works. All I know is my father can't be alone anymore, I can't be with him because I have to work, we have no other family support, we can't afford home health aids, the people from the local hospital have not been helpful and my father is likely to need a nursing home soon but trying to get him into one is too much for me to handle and he doesn't have that kind of money. Not sure where to post this, skilled nursing, Medicaid or dementia.
Have Dad apply for Medicaid asap.
Has your father given formal HIPAA authorisation for you to liaise with his health care professionals?
Do you have Durable Power of Attorney for him?
2 and 3 are important admin-related steps to take, so see to those as soon as possible.
I am gnashing my teeth at the "counsel of despair" attitude you're getting from the nurses. I *know* health services around the world feel under pressure and unappreciated, but for heaven's sake. Was that really the best she could do?
Whereabouts do you live? Perhaps we can have a dig around and see if there are any Parkinson's or dementia related support organisations operating near you, too. But first things first - get hold of the reins, and get your father's needs assessed.
Its been really bewildering with those nurses and doctors. The neurologist referred the home nurses, they came out, told us they can't do anything because Medicare only pays for an immediate or treatable condition, not something like Parkinsons. You would think the Dr should have known this. Then, I had him see a new Primary Dr affiliated with the hospital who did the same thing. The head nurse called me and told me he doesn't qualify so I asked her somewhat frantically "what should I do contact nursing homes?". That was in my head because the neurologist at the last visit had written at the bottom of the the summary to contact nursing homes. Well, I or he don't have that kind of money unfortunately. I sensed the nurse knew this and knew I was in a bind but offered no advice or help. O and one more thing, the doctors office called me and mentioned something about the nurses wanted to refer to Elderly protective services which really got my goat. I take care of him the best I can and he's happy with me. I really don't understand and I'm very upset if someone thinks there's mistreatment going on. All I wan't and need is some help.
We're in CT.