A medical care team from one of the local hospitals was assigned to Dad. The doctor came monthly, and the nurse practitioner came more frequently.
Monthly care conferences were held with the staff and the nurse practitioner. At one care conference, the practitioner had an announcement.
“We have determined your Dad has Lewy Body dementia.”
Lewy Body dementia. I remembered it was the disease they thought my friend Karen’s husband suffered from (early in my blog).
Who Are You?
Lewy and Dad were becoming one at that point. Was I talking to Dad or talking to Lewy?
I remember feeling more confused…and more numb. I still didn’t know much about Lewy Body.
But I witnessed the impact of Lewy growing in his brain.
What are you?
I believe Lewy Body represents the worst of Alzheimer’s and the worst of Parkinson’s combined. It is the loss of memory and brain function like Alzheimer’s, combined with the rigidity and stiffness of Parkinson’s Disease.
It was worse than my mother’s cancer – once her kidney cancer returned with a vengeance, she died within three weeks.
Lewy Body affects almost every system in the body – cognition, sleep, physical and behavioral. It may cause hallucinations, Parkinson-like rigidity, affect bowel and bladder control, blood pressure and temperature regulation.
Each disease takes its own course, and I am not saying my loved one’s horror is any worse than anyone else’s. Pain and suffering is just brutal. I watched the horror or Lewy overtake my dad’s body and brain.
As time went on, Dad couldn’t even lift a piece of bread to his mouth. He was carried in and out of bed with some sort of hydraulic lifter. I refused to watch. He would be turned over every couple of hours at night so he wouldn’t get bed sores.
They said Dad had become a “functional quadriplegic”. While technically he could move his arms and legs, his brain would not connect with his muscles. Everything had to be done for him. Did he still have some awareness? If so, how he must have hated what he had become.
Medical Assistance (MA)
In September, 2011, Dad ran out of money. Of course I knew this was coming, so I was prepared (thanks to my mother and her bookkeeping, I still had the records from when I initially applied for MA) years ago). He of course qualified, and the government took over paying his nursing home bills of over $6,000 a month.
When my parents sold the house in July of 2006, they gave each of us four daughters $1000. (This was basically our entirely “inheritance”.) For five years I wondered what would happen if my parents ended up needing MA, as the government has a five year “look-back” period. Would we have to declare they “gifted” us this money? I asked my oldest son who works for the county; yes he said, we would have to declare any significant funds they gave away within five years.
Note the date we applied, September 2011. The five-year period ended July 2011.
Coincidence? Luck? No, I don’t think so. I believe God was protecting my parents, just as he had promised.
Where did the tears go?
At least I wasn’t crying too much anymore. I suppose the antidepressants were working. Maybe I was cried out. I could just pray.