The Because Is Your Cause

First published in The Oxford Journal on Wednesday, January 22, 2014, by Sara Jewell Mattinson.

January is Alzheimer Awareness Month. February is Heart and Stroke Month. April is Daffodil Month for the Canadian Cancer Society while October focuses on specifically breast cancer awareness; it’s also National Autism Month. Inside those months are weeks and days dedicated to causes. In May, there is Hospice Palliative Care Week and National Bike to Work Day. Throughout the fall, there are days for literacy, older persons, diabetes, AIDS, suicide and human rights. 

(For a Canadian list, go to www.charityvillage.com/directories/special-awareness-days). 

My cause of choice is Alzheimer disease because I hope to use my personal experience to improve the lives of those diagnosed with dementia, in particular to change “suffering from” to “living with” dementia. 

There are other causes I could have championed.

Regular colonoscopies after the age of 50 would have prevented my mother from developing colorectal cancer but she survived and can speak for herself.

One nephew was born with a congenital heart defect. Another nephew has autism. My sister is a passionate and devoted advocate for her children. 

When it comes to my father, however, I am his voice. Whichever dementia he had – Alzheimer disease or Lewy Body Dementia – it took away his ability to remember words and speak his thoughts. He needed me to speak for him when he was sick but even more so now that he is gone.  

What makes speaking out about dementia particularly difficult is something I call “the Alzheimer recoil”. Likely you did it yourself when you started reading this column: “Not another column about Alzheimer disease”. 

Which is precisely why I have to write and speak about it. 

What motivates me is the memory of my father’s eyes once he was in the palliative stage and had gone through drug withdrawal. For several years, he had been on some heavy duty drugs to control his behaviour, including an anti-psychotic drug that was never intended for people with dementia. Until the morphine was administered in his final few days, his eyes were clear and he was more alert than he had been for three years. 

My father was still there. 

The clearing of my father’s eyes opened mine to the misunderstandings and misconceptions so many caregivers, both professional and family, have about this particular disease. And once your eyes are opened, once you learn something, you can’t go back to being ignorant. Once you are motivated, you certainly can’t remain quiet. 

If one person, one family can be helped because of what awareness you bring to a life-changing condition then you have accomplished something worthwhile.

Because, ultimately, my father’s experience taught me this: It’s not about you; it’s about the person with the disease or syndrome or disorder. As personal as if can be when it is your spouse or your parent or your sibling or your child who is sick, you simply cannot make it about you. 

So as hard as it is to relive the mistakes I made as a caregiver, as hard as it is to watch people recoil from the topic, as challenging as it is to make decision-makers realize that better care for people with dementia is about dignity, not dollars, this is my cause. 

It could have been multiple sclerosis, it could have been ALS, it could have been Parkinson’s, or even brain cancer. All those conditions changed the lives of people I knew but I chose what was most personal. I write and speak about dementia because it changed my life. 

When you find the “because”, you’ll have found your cause. 

Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.  

~ Dr. Seuss