‘The light grows dim’
After reading Tom Fink’s editorial last week as he recounted conversations about his mother who has dementia, I realized I never dealt with or had family members diagnosed with it. But, I have helped others deal with it by providing personal assistance to them in their own home and sometimes in an assisted living facility.
The job of a personal assistant or caregiver is huge. I became their advocate, their arms, their legs, their brain and their voice.
I could read facial expressions when they could not find the words.
I learned how to communicate with those who were stuck in the 1930s or 1950s era - or somewhere between here and there. I cared for a number of those who had early onset Alzheimer’s to those who died from the disease.
These were classy folks who lived a great lavish lifestyle and rarely forgot where they came from. They just could not remember how to get to the present time or recall anything that happened five minutes earlier. The disease is not picky with who it attacks - wealthy or not.
This meant I did a lot of role-playing and repetitive behavior. So, how does one effectively deal with dementia in the family?
First, you have to consider they are existing in a new world every single day, multiple times a day - while some never leave their own world. It is a place where objects and people have no name or a different name. It is sometimes a scary place and sometimes a safe place.
Some are physically active and some are bed-ridden. I have been referred to as their doctor, nurse, mom, sister, kitchen staff, therapist and friend. But none of the people I looked after ever called me by my name. It did not matter who I was and I was okay with that. To them, I was someone they trusted and felt safe with- and that was important enough.
My “friend” (client) Judy was a very classy lady. We often went on shopping excursions and would later complain how tired we were for going when we never even left the house to begin with.
I went into her room one day after bringing her potato-crusted Salmon, couscous and a side of steamed mushrooms. She asked me, “Can you please tell the kitchen staff to hold the mushrooms in the future? I really do not like them.” I said, “Sure. I will let the kitchen staff know.”
Then there was my “friend” Debbie, a housewife to a prominent businessman. After a life-saving surgery, she was never the same.
Her brain deteriorated even more causing her to forget how to walk. She had vascular dementia. Her memory rarely went past 10 or 15 seconds.
Witnessing her death was both heartbreaking and peaceful. She made me realize that love is not always what you say. It is what you do.
My “friend” Sue who passed away two years ago told me I would forget her some day. I doubt it. Although she was never diagnosed with dementia, she was on oxygen, and suffered memory loss issues when she inadvertently became disconnected from it. She used a motorized scooter to get around the facility and sometimes got tangled in it.
Lack of oxygen gave her a wrong sense of where she was or who was around, such as when we went to the dining hall during Christmas where everyone’s family showed up to be with their loved one.
As we passed a well-dressed man, she looked up at him and said, “Sir? I will have a glass of white Zin (Zinfandel wine).” Puzzled, he looked at me. I smiled and said, “I will have one too,” and we politely strolled away. I always wondered how long he stayed confused or if he ever figured it out.
My “friend” Louise was very energetic and was in the care of her husband entirely until I began helping. I reminded her husband when I was at his house she is his wife.
And, when I leave for the evening, she was a four-year-old. That is because his role would change on how to take care of her.
Her husband kept notes dating back to 2007 when he began to see changes in his wife. One note read: “She once cooked our meals and now she sits on the stool at the bar waiting to be fed. The light grows dim.”
And so, as the light grows dim for more of the one in four senior citizens diagnosed each year with Alzheimer’s - with that comes the awareness that we will play many roles in the lives of those affected as they step back in time to a place they only remember - a place we are invited and a role we must play well.