When I first heard the Alzheimer Society of Canada was launching a national campaign called “See me, not my disease. Let’s talk about dementia.” I had to smile. “I get that. I totally get it!”
Being able to “see” my Mom beneath the veil of dementia has been a saving grace as I walked alongside her in her dementia. It wasn’t until I really grasped this concept that I was able to maintain a meaningful relationship with my Mom.
Stigma is the root of this year’s theme and for good reason.
According to a recent poll by Alzheimer’s disease International, 40 per cent of people with dementia experienced loss of friendships after being diagnosed. People just don’t know what to do or how to respond to such a bomb shell. Fear, stigma, misinformation all cloud the water and people just drift away, leaving the Alzheimer victim deserted and alone.
Since my mother’s vascular dementia hit us suddenly and by surprise, we didn’t experience the gradual signs of stigma. They hit us as quickly as the disease itself.
The first place we felt the sting of stigma was within the medical community. Doctors at the clinic and hospital level pushed past my mother’s acute care symptoms (delirium, dehydration etc.) and attributed all her behaviours to Alzheimer’s. They stopped looking for solutions because they were not able to SEE my mother, a woman who only weeks early had been paying bills, driving her car and cooking meals. They couldn’t see her at all -only her disease. Once the label had been cast, we lost our voice. In a matter of weeks, to the outside world she transformed into a crazed old woman and I her bothersome caregiver.
But it isn’t just the medical community who has stopped being able to “see” Mom, it has happened in many ways. Friends and family visits drop off. People have said, “I feel like she’s already gone. What’s the point in visiting?” Last summer, I passed a clergyman in the hallway who was visiting another resident at the nursing home. As he passed me, he asked my Mom’s name. I told him her name and room number, thinking he wanted to visit with her, but he responded, “Oh, she wouldn’t even know I was there.”
I was so stunned by his words I couldn’t respond. Firstly, because Mom is still quite capable of enjoying conversation and company, but secondly, how sad to think a minister would forget that a Christian woman could ever be too old (or too far gone) to receive comfort and peace from a word of prayer or by hearing long-loved scriptures.
The diagnosis of Alzheimer’s is a death sentence, yes, but we need to stop burying people before they are gone. Everything changed for me once I realized that although my mother’s memory and personality is slowing eroding away, she is still “in” there – I just have to look harder.
Sad as it is at times, my job is to make connections. Some days we talk, remember, joke and laugh. But other days it is only a held hand and the knowledge that I have left her feeling loved, affirmed and cared for.
May I never lose my ability to look past the paranoid behaviour, the messy way she eats her food, the forgetfulness and sometimes even non-friendly behaviour. May I forever see the woman who brought me into this world and not only her disease.