My father is still young, he is 69, but he looks like he is almost 90, has no strength to move, so he is wheelchair bound, and has severe Parkinson's. I contact his neurologist a lot and they are trying to up his medications, but going back and forth to the doctor, who is over an hour away, and my dad is in an Assisted Living Facility with an aide for 12 hours a day. There are no neurologists in the area who specialize in Parkinson's as well as are dealing with my Dad's other issues. I believe he has Dementia, we have not gotten a full diagnosis as the doctors want to perform all these different tests and it aggravates my dad. He is freezing more and more and at times, I feel like I can't keep putting my dad through the pain anymore. He does not like going to the doctor, he has been to more hospital visits and doctors, and he says nothing makes him feel better. My sisters and I think that we should just try and keep him as happy and cared for as possible, and enjoy what time he has left. He has PTSD from traumatic episodes, most recently him being abused in a rehab facility, thankfully I was able to get him out of there, but the damage was done. I feel like it will soon be out of our hands, and I feel like maybe just trying to enjoy life with my dad is better than nothing.
Does anyone have any other advice?
Same goes for your father. He may need more care than an AL can provide him with, however, at least eventually. Look into Skilled Nursing in case AL threatens to ask him to leave at some point for being more than they're capable of handling. That's what happened with my dad. Right then is when I DID get him an MRI at the ER and found out his tumor had grown and he was given 6 months to live. THEN I was able to get him on hospice at the AL and they agreed to keep him until he passed. I did not want to transfer him into a SNF b/c my mother was alive at the time and separating them would have hurt him tremendously. So that's my suggestion to you: to look into hospice care for dad in the AL he's in now when he declines further. Rather than moving him to a SNF, etc. Make sure with his current AL that they'll agree to keep him until death as long as hospice is coming in to care for him. My dad was kept very comfortable with hospice for the duration, thank God, and it was the best of a bad situation.
Wishing you the best of luck with this whole scenario. I know how hard it can be to go thru this with a loved one. We hate to see them suffer yet there's not much we can do to help them, but be there for them to hold their hand and love on them.
They will adjust meds, and so on, PT helps, freezing is common in later stages.
We went to every specialists, all the tests done, twice, thrice,
MRI, 3 surgeries.
He does not have dementia, highly functioning, my only objective is providing the best quality of life
But, knowing there is no cure, acceptance is the only solution. It is horrible, cruel disease.
If Dad feels he is done with Drs. then go with him. I agree, they get tired of being poked and prodded. But, he may eventually need more care than an AL and aides can give. You may want him evaluated for Hospice care. There are advantages, like free supplies. You don't have to except it but Dad will be assured that there will be no hospital visits or hour long drive to a neurologist. He will be kept comfortable.