I have a human shadow and he is my Bert, my husband. I am not unique as any caregiver of a person with dementia will tell you. There is this phenomenon called Shadowing with which we are intimately familiar.
As the name suggests Shadowing is when persons with Alzheimer’s and other types of dementia follow their caregivers around 24/7. They become agitated even suffer anxiety attacks when the caregiver is not in sight. I do mean ‘when not in sight’ every minute, every hour of every day.
Caregivers are literally the life preservers, security blankets, the one safe, known aspect to a brain gone berserk. This brings certain challenges and yes, some hilarity to a caregiver’s existence. Shadowing is the epitome of claustrophobia. The caregiver feels confined. You are never allowed to be alone. I knew I was in trouble when at a formal luncheon I went to the washroom and left the stall door open in case Bert missed me and came looking for me!
Ask any caregiver and you will find out we subscribe to a very special ‘open door policy’. Having a shower or bath is challenging as you know you will be interrupted. So why not lock the door? Because you do not want to put your loved through the anxiety, the agitation, the panic that comes if he or she cannot see you.
My computer desk is perhaps 12 steps from Bert’s chair but in the middle of doing emails, or writing I will feel his presence and hear: “I miss you.” My Lifeline Group and I have much to discuss once we begin to talk about Shadowing.
At times it can result in mishaps. To be close to you your loved one may ask repeatedly to ‘help’ you, and there are tasks they can do. However, you have to tell them in detail, one step at a time when any new task is attempted. So this day Jackie is making a pot roast. It simmering nicely and now she is making a salad when Bob keeps pestering asking to ‘help’. Ah, he can wash the greens. Both are happy. Jackie looks away for a minute, turns around and the greens are in the pot with the roast, simmering away!
When Jackie told me this a day later she was still seething, but the universe having blessed me with a weird sense of humour and a wild imagination, I started to laugh.
“So, did you make green roast and gravy?”
Soon, Jackie joined in and we roared. I kept seeing spring greens simmering away with a pot roast.
“Oh Paula, thanks. I needed to laugh. The worst thing was that I was livid and he was quite unconcerned about the whole thing. He was just happy he was with me in the kitchen helping me, while I just saw the mess I had to clean up and wondering how to salvage the roast!”
Caregivers are tired and Shadowing contributes to that. In my instance just as I am in a deep sleep Bert will get up, see an arm or a leg exposed, so he has to cover it. At other times he does need the reassurance that I am there so he wakes me to tell me he loves me, or strokes my arm, or calls my name. So now I am awake, he is happy that I am there and soon is snoring away. I rarely get back to sleep. Yet as morning approaches you are on call doing everything for two.
Shadowing results from an illness. Caregivers adapt. It is what causes Shadowing that is the greater stress. When claustrophobia sets in we are not and cannot be angry with our loved ones, we must always remember ‘it is the disease’. I hate Alzheimer’s disease.
As my Bert loses the present, I remember the past, the times ‘when’. Then interruptions, loving gestures and expressions happened for a reason and were logical, not the cloying manifestations of a dread disease. Now even those memories of times past, though good, are tinged with regret as now I must remember for two.
The Meander: The conundrum of Shadowing is also the Alzheimer’s conundrum: There is sadness in the happiness and happiness in the sadness and the glue between the two is the absolute faith and trust of our loved ones in us, the caregivers. Awesome!