Wednesday, January 23, 2013

Talk About Love

First published in The Oxford Journal on Wednesday, January 9, by Sara Mattinson.

A website for caregivers called has this fact on its home page: 
“103,000 Canadians will develop Alzheimer disease or a related dementia this year. That’s about 1 person every 5 minutes.”
I look at that statistic -- one person every five minutes -- and it doesn’t seem possible. That’s SO many people. But it’s not a statistic you want to make up, and considering that most caregiving for people with dementia is provided by a family member, usually a spouse, at home or in a nursing home, it’s an issue -- a future pandemic -- we have to address. Yet how about this fact? Canada does not have a national strategy for dealing with those 103,000 people who will be diagnosed with dementia, a disease that cannot be prevented or cured. 
It’s time to get over our fear of Alzheimer disease, a fear that keeps us from discussing it with family members, health care providers, and politicians. We cannot continue to ignore the impact dementia has on families, employers and the health care system. This disease is not going away; dialogue, not denial, is needed now. 
Start by reading two particular books. Read them before you receive news that someone close to you has been diagnosed, before you realize that you are going to be taking care of someone with dementia. Read them before your own brain is enveloped by the fog caused by what my mother called “thinking for two”. Read them now because fear does not thrive when there is knowledge.
Read the novel STILL ALICE by Lisa Genova. There were things in that book that I wish I’d known when my father was first diagnosed. At the very least, stand in the book store and read Alice’s speech from page 250 to 254. 
Read I’M STILL HERE: A New Philosophy of Alzheimer’s Care by John Zeisel. When you watch your parent turn into a zombie because the nurse in charge of the locked unit wants everyone drugged because they are easier to handle, you wish you had other ways of helping that don’t involve drugs and restraints.
Information is key to avoiding the fear and ignorance that keep people with dementia from being treated as kindly as they deserve. I know.
The Alzheimer Society of Canada has launched a new campaign called, “See me, not the disease. Let’s talk about dementia,” because there is a huge stigma attached to the disease. As Alice says in the novel, being diagnosed with Alzheimer is like being branded with a scarlet letter A. 
I know. After my father’s diagnosis, I reacted the same way most people do: I treated him like he  was already incapable. Thankfully, I was given the chance to realize how wrong I was before it was too late. 
After my father had to be moved into a nursing home, every day I said to him, “I love you, Dad,” and even though he couldn’t say those words back to me, he responded in a way that meant he understood, and he always, always responded to the word “Dad.” I could see it in his eyes. He knew what love was and he knew who he was.
It’s also how I knew he was aware he was dying: when he reached the palliative stage and had come through drug withdrawal, his now-clear eyes told me he was afraid. 
Because that kind of awareness remains, it is imperative we get over our fear of this disease.  Fear, denial and ignorance cause more pain and suffering than they avoid. I received good advice during my years as a caregiver but much of what I learned came from my father as we stumbled along together. Could I have taken better care of him if fear hadn’t kept us from speaking about his illness? It might have made a difference if we’d been able to talk about how he was feeling on any given day. 
All we are called to do is meet our loved one living with Alzheimer disease where they are each day, to respond with compassion instead of fear.  A man once spoke to me about how upset he was that his mother talked to him like he was her husband -- his father. He needed to stop fighting the reality and accept the joy that his looks reminded her of the love of her life. 
And I would give my life to uphold this truth: The plaques and tangles of dementia do not affect the ability to feel love or to understand what the word means. Saying “I love you” every single day doesn’t ease the burden of caregiving but it certainly is a better place to come from than a place of fear. 
It’s not Alzheimer disease that we should be afraid of; it’s ignorance. Speak up, even if all you can talk about is love. 

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