Sunday 14 December 2014

Alzheimers - While Shepherds Watched Our Flocks.

Christmas – a time which stimulates a very personal memory. It is time to share it. Think about this. Please.

In 1996 I sat with my mother and father and another couple at a simple table, in a simple dining area, eating a simple Christmas meal in advance of the big date itself. There were some old decorations - artificial, and - simple. Dad was tucking into his turkey. Mom was smiling. So was the other lady. Neither husband seemed to share the richness of the moment.
As I looked around, similar scenes unfolded with many faces - some smiling; some sad; some blank. I remembered former family feasts with toddlers in highchairs being spoon-fed by a parent. Parents struggled to direct one utensil to the child’s mouth and another to their own before the meal became cold. Sometimes kids enjoyed every morsel as seen by their smiling faces, giggles, and flailing arms. Other times they resisted every spoonful. Food was dropping everywhere. That was long ago.

This time the difference was stark. Here, there was little resistance and no giggling. There were some highchairs. Food was dropping. Some spouses were struggling to enjoy their own food and feed their dependent. However these dependents were not toddlers but seniors with Alzheimer’s. The lady at our table was feeding her husband. At others men fed their wives, or volunteers fed a stranger without any relatives who bothered to visit. Soon thereafter, we would have to feed Dad.

There are other memories. I remember the first time we had to leave Dad in the “lock-up” facility - him following us to the door; the guilt on our faces; the look on his. “The Doctor said you have to stay for a while” was our explanation. Dad was either so ill that he had no ability to argue, or he was just being himself and was accepting the inevitable peacefully for our sake. We will never know.

I remember entering the combination the nurse gave us to open the door while hiding it from the more clever residents. For them this was entertainment. Some managed to exit but were always returned. The combination would be changed. The game would start over.

I remember when Dad stopped addressing me by name and the first time we saw him walking up and down the hall hand-in-hand with a little lady who resembled his wife.  Mom smiled and thought it was cute - or so she said. One stark image was that of Dad standing in the corridor chatting to another older man who responded in kind. It was total gibberish - baby talk. But they seemed to be communicating!
I remember Dad’s future roommate - the same man. He was alone - first in a corner chair; later in his bed. His brother never came. The man wasted away. Then he died.

After dinner we gathered in a room to sing carols. A volunteer played the piano. Most people sang including the patients. Mom sat and joined in - her voice an unmistakable soprano. The pianist remarked after the first tune that she could hear one clear voice hitting the high notes - Mom’s. Dad also sat and sang - something. I held the song sheet for a man standing on the sidelines with me. He held it with me but was obviously singing from a failing memory.

Mostly I remember thinking as the food was served, that on December 25th the same caregiving staff would be here once again, not at home with their families. I shuddered to think of the consequences if too many of them took a “sick” day on Christmas, or any other time. It would be Bedlam - literally.

I hereby gratefully thank every Caregiver to the chronically ill in every facility everywhere. So should you. Some day you might need them. Know someone with this disease? Visit them - often. The staff will know you care even if the patient doesn’t. That alone will sometimes make a difference in the care which they receive. It shouldn’t but we have all heard of a very few places where patients were not only ignored but abused when there were no outside eyes keeping a vigil.

I remember Dad’s final moments.

God - whoever and wherever you are, and anyone else so inclined  - bless Caregivers. Please keep up the good fight.
There are many great blogs devoted to this disease. Here is an earl for a partial list:

List of Alzheimer Blogs

The Brewster