“Me and My Alzheimer’s Shadow” is a quote from Bob DeMarco and the Alzheimer’s Reading Room.
Alzheimer’s Shadowing was one of the most disturbing symptoms for me as a caregiver with my own Mom.
At the time, I didn’t know why Mom followed me everywhere, nor why she woke me up during the middle of the night only to stand beside my bed and stare down at me without saying a word. Yep, it was spooky– to say the least.
It was a frightening experience. While Mom lived with us, I had a shadow every time I moved, a real- life, human shadow. Mom would hunch her shoulders and creep quietly like a cat stalking a mouse. If I turned quickly and caught her on my heels, she would stare at me without saying a word. I can’t count how many times I awoke in the morning to find Mom leaning over my bed, eyes wide and staring.
Eventually, I began to realize that she saw me as her security. If she was on my heels if I turned around quickly or standing beside my bed while I slept. And that made her happy. If I was in-sight, she was okay.
Though still a frightening sensation, I could understand why Mom needed to do it. Shadowing is no fun. Not for the caregiver, nor the person with dementia who feels the necessity to stick so closely on the heels of their caregiver. Yet, for awhile, they must do it.
If I had it to do over, I would try a few new things with this most annoying symptom.
1. More Hugs: Maybe Mom needed more reassurance and comfort.
2. More familiar Items from her own home: Perhaps she would have felt more confident and content if more of my Home felt like her Home.
Still — Shadowing is a known symptom of dementia so there may have been nothing I could do to prevent this phase at all.
I hear about shadowing from other caregivers often, and most others have the same sentiment about Shadowing. So I believe it to be more likely that the person with dementia needs the caregiver so much that shadowing will happen no matter where they live or what comforts are afforded them.
Still, Alzheimer’s shadowing or not, with a “do-over,” I would bring more of Mom’s items into my home to make her surroundings more familiar.
Mom packed one suitcase for the trip to live with us. And I didn’t fully understand how little memory she had left about packing for a trip away from home. The circumstances were so hectic and disturbing, no one thought to bring more of her own surroundings to her new home.
Care-giving is difficult. Afterthoughts and regrets rule supreme!
Emotions are raw and confusion reins. In the first days of “caregiving” most folks haven’t read a book or visited a memory cafe or spoke to a nurse or nursing home or any others who could help in the transition phase. I’d been so busy caring for my mom and coping with behaviors that I didn’t understand that I hadn’t taken any of the above steps.
Actually, the quicker you can learn and understand more about some of the odd behavior and symptoms of a loved one with dementia, the sooner you, as a caregiver, can learn to cope and make better choices.
Read books, join Forums (locally and online) call your local Alzheimer’s office