Monday, January 27, 2014

"What Does Dementia Have To Do With Me?"

As Alzheimer Awareness Month in Canada comes to an end this week, a final mini-essay on a subject so important to me.

If you want to take better care of someone living with dementia, if you want to better understand this disease in general (and I wish you would), this story -- and others like it -- are important eye-openers.

A man living in a nursing home kept getting up in the middle of the night and leaving his room. The overnight staff would battle with him by insisting he return to bed and stay there until it was time to get up. He became agitated and uncooperative. He often ended up receiving medication to calm him.
During one of his wife's visits, a staff member mentioned this recurring problem of the man waking up in the middle of the night. She said, "He was a milkman. He got up at 3:30 a.m. for most of his life."
From then on, when the man appeared at the nursing station in his pajamas in the middle of the night, the overnight staff took him back to him room, got him dressed, sat him down at a table in the dining room and gave him breakfast. They sat with him, providing him with companionship and conversation until the other residents got up.
He remained calm and cooperative and apparently, was quite congenial.

Sure, this is a strong example of why personalized care, care that is structured for an individual, not a group, is so important with dementia, but how does this extrapolate to life in general?

Understanding is all about compassion. The more you know, the more you understand. The more you understand, the better you treat others.
Do our attitudes towards dementia -- fear, ignorance, denial, disgust -- simply reflect our attitudes towards other diseases and disorders? Like Huntington's disease, autism, bi-polar disorder, schizophrenia, any kind of brain injury. Just to name a few.
If you can't accept someone with dementia, are you treating others the same way? With the same lack of respect and lack of compassion?

It's not about ignorance of the condition -- realistically the average person can't know the symptoms of dozens of diseases and disorders -- it's about not making a judgment based on what you see and what you assume.
Another lesson from my father's experience? Assume a person acting differently (we like to say "strangely") likely has a disease or disorder that is affecting them. I no longer assume someone is crazy or drunk or high. But if they are -- who am I to judge? 

Understanding equals compassion equals acceptance.
Of everyone and everything.
It's love versus fear. What is your default reaction?

The challenging question is this: What if _____ was the norm? Insert whatever condition affects someone you love.
What if autism were the norm?
What if bi-polar disorder were the norm?
What if dementia were the norm?

Except that, if the numbers are borne out, in 30 to 40 years, dementia will be the norm.
When that happens, will you be filled with love or fear?

My parents' 40th wedding anniversary, 2006. Dad had been living in a nursing home for nine months.

Originally posted on my Facebook page, January 26, 2014.

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