I HAD ORIGINALLY WRITTEN THIS POST ON JAN. 22, BUT HAD TO EDIT IT, THEN I FORGOT ABOUT IT.
As if having someone you love have Alzheimer's Disease isn't bad enough, it is a CONSTANT STRUGGLE to keep them at home. In the last 24 hours, I was told that the respite hospice provided cannot be scheduled in advance (which means I cannot make arrangements ahead of time for Mike when we go to Washington) and Mike's aide was pulled from us (temporarily) for not passing her physical.
I inquired about respite care last week with hospice's social worker. She left a message for me yesterday indicating that unfortunately, beds cannot be reserved. If you want respite and a bed is available, then OK, if not, then you're out of luck. How in the world can I make reservations (train and hotel) if there's a chance that there will be no place for Mike to go??? Something is wrong with that and I will have to look into it further. The last time I put Mike in respite, I had to make arrangements months in advance. This just does not make sense.
This morning, Mike's aide went for her required physical. I got a call at work around 11:30 from the home health agency indicating that the aide failed her physical and had to be pulled from the job. Just like that, they requested she leave. They found an aide for the afternoon and tomorrow, but what the heck?! The aide's blood pressure was too high and they felt she was too unhealthy to work. She left our house and went straight to her doctor. She received her medical clearance and will be back at work on Monday. Unfortunately, Courtney will be moving back into her dorm tomorrow and I will have to leave Mike with an aide he's not familiar with.
If you want to keep your loved one at home, everything is difficult. I have to fight for just about everything and honestly, I am getting tired of it. Beside the emotional devastation this disease has brought us, it has also brought numerous challenges and hurdles. You need to be really strong if you want your loved one home with you and you need the tenacity to fight like hell.
Everything is a struggle on some level.