Returned from my visit to the midwest to see my father who has been in a
rehab center for the last 11 months. He has advanced Parkinson's and normal
pressure hydrocephalus and dementia. He recognized my wife and myself and we
were sometimes able to have brief conversations. He is lucid for short
periods of time then either sleeps or is semi-conscious. He is incontinent
and unable to stand or walk but not in any pain. It takes at least 2 strong
people to get him to the bathroom. He can't remember that he can't walk so
he is always trying to get out of bed when the urge to urinate strikes. My
mother won't let them restrain him so she stays at the rehab place 7 days a
week, 12 hours a day plus 24 hrs a day on the off day of the woman she hires
to stay with him for 12 hrs on six nights of the week. Obviously this is not
a workable situation from my point of view but my mother is not interested
in my point of view. I'm going to have to wait until something breaks before
I can really try and help. It was good to see my father one last time but it
also made me very sad to see someone who wrote many books now unable to read
or write. His current situation is worse than death.

I can't tell if my mother is also showing signs of early AD, or if the
stress of this situation has just overwhelmed her, or both. She is living on
candy bars and diet coke, so this diet is not helping. She can't give
directions in a town where she has lived for 35 years. She gets frustrated
very easily, and did I mention she doesn't want any advice or to make any
changes. She complains about bills and no money, yet makes very poor
decisions about spending the money that is available. She is still paying
car insurance for my father and refused to let me sell his car for her. She
is hoarding many common items. The cabinets and spare bedrooms are full of
stuff she won't ever use. I threw away sacks and sacks of old food and
cleaned the refrigerator while she was gone but I didn't even get to the tip
of the iceburg. The situation with my mother made me even more sad than that
of my father. She won't let me (or anyone else) help or advise her, unless
they just want to help her keep doing what she is doing now. My father
should be in hospice but that would mean my mother admitting he is not going
to get better. Instead of doing that, she will continue to pay 4K a month to
keep my father in a transitional rehab facility and another 1.5K a month for
the night time watch. I figured up that my mother is spending about 90+
hours a week as caregiver and sleeping in a chair. Her continual presence
has actually trained the facility employees to not help unless called.

The visit left me very sad. One parent is end stage illness and dementia and
the other is starting down the road of the very difficult early stages.

My elderly MIL with vascular dementia now seems like a walk in the park
compared with either of my own parents situation.
btw- At the last minute we decided to take the MIL with us since we thought
respite care would be too confusing to her. We lucked out. The trip
seemingly energized her. Other than asking us about 30 times a day where we
were and what we were doing, she traveled very well, ate well, seemed to
enjoy herself and just did wonderful. We even got bumped to first class for
one long leg of the flight. We are so glad we just took her with us.    AW