My Dad, a man of few words, robbed of memory in his final days…  By

My Dad, a man of few words, robbed of memory in his final days…

My Dad was a victim of Alzheimer’s. I guess you could say, my mother was too. She did not have any of the medical symptoms, but at the age of 73, she found herself as my father’s principal caregiver in rural Saskatchewan, Canada. At the time, he was hallucinating at night, imagining wild horses outside his bedroom window in Netherhill. He stuck a fork into a live electrical socket, and sadly, unpredictably one afternoon,  he gathered up all of my mother’s precious photographs from her native Russia and put them in a garbage barrel outside and set it on fire.

Untitled-15 copy

At the time, I was a single professional woman living far from my parents, with no real opportunity to spell off  my mother from the enormous physical and psychological burden of caring for my Dad. In his last days, her own health failing under the pressure, she made the wrenching decision to commit him into a care facility several miles from where they had shared a life for half a century. Their only contact from that moment onwards was under the florescent lights of that antiseptic institution. My Dad, the gentlest human being you could ever know, disintegrated rather quickly in his new living situation. He became violent and agitated with the other residents, and he began to wander outside the grounds. Was he desperately seeking his own home? His own family? I can hardly bear to recall or imagine the distress in which he lived out his final days.

DSC01746

Like so many Canadian families, we had limited choices. I saw the price of that, every day in my own family. To her last breath, my mother never forgave herself for ‘abandoning’ her husband. I too have had my share of guilt, as the only daughter, too busy, too wrapped up in my own life, to come to the aid of my elderly parents when they needed me the most.

This country is the only one among the G8 with no national health care strategy to assist victims of dementia. We are blessed in so many ways in Canada, but imagination and creativity in social strategies are sorely absent. I can speak from my own personal experience. That is the backdrop in which I am producing an hour long network special on Dementia for Global TV’s flagship current affairs program, “16X9″. (April 26th, 7:00 EDT).

NOV_6662-Edit

I have just finished the script. It was the hardest one I have tackled for a long time. More than once, I have had to walk away from the computer screen, my face wet with tears, recalling the anguish of the last days of my Dad’s life. And the emotional turmoil of our family, so ill equipped and overwhelmed by the cruelty of this disease.

image002

If there was a country named Dementia, it would be inhabited by 35 million people today. We are still at least a generation away from a ‘cure’, according to the experts. In the meantime, we can expect the population of “Dementia, Canada” to blossom to 1.4million within a generation. That’s the population of Toronto.

20140216_072010

In preparation for this network special, my shoot took me Northern Thailand and the Netherlands. Leave it to the Dutch to show the rest of the world a better way. I’ll take you inside the revolutionary “Dementia Village”  for the daily cocktail hour at the pub. For a spin on a bike around the village, joyously led by  80- year old Mrs. Poa. A remarkable testimony to   courage to try something new. And what happens when the government gets behind its brightest, most creative and inventive minds.

Let’s visit the second floor of a Winnipeg nursing home populated by 102 Moms and Dads and Gramps and sisters and brothers. Loved ones. Our darling demented…the men who fought for this country. The women who raised us. The teachers who inspired us. They are all there, still, behind the glassy eyes that loved us. Don’t we owe that Greatest Generation that ever Lived, a better deal?

 Dad, this one’s for you.

13 Comments

  1. Dianne Stinka

    Roxana, I can read the heartbreak in your blog tonight. What a terrible disease that so many people are suffering from. I am certain you will do your dad and this subject justice in your documentary, as your heart is so obviously in the project.
    We all have regrets and guilt about not being there as much as we would like to have been when our parents needed us. Please don’t beat yourself up about it…you did the best you could at the time.
    We will certainly be watching on April 26, and will spread the word. Keep up the good work.
    Dianne Delday

    1. I am captivated by the notion and power of memory. How much of our identity is created through story. Thanks for this diane

  2. Lost a father-in-law and two uncles to Alzheimer’s. My mother-in-law looked after Dad for 10 years before her health forced her to put in in a Level 4 home. You could find thousands of stories like this all over Canada so I sure hope your documentary forces some action

  3. Gayle Leslie

    I just entered a reminder in my iPad calendar to watch.

  4. Gayle Leslie

    PS..I just love the picture of your Dad on his Ariel.

  5. [...] Roxana Spicer is a freelance producer for 16×9. Read about Spicer’s personal experience with dementia through her blog. [...]

  6. [...] Roxana Spicer is a freelance producer for 16×9. Read about Spicer’s personal experience with dementia through her blog. [...]

  7. I have such great understanding having had both parents diagnosed with dementia. The only thing that gets me through this is the addition of private care provided by kingston dementia home care. You can not cope without private care AND the support of other caregivers (as the toll on caregivers is enough to unspool your own mind.)

  8. Roxanna, I don’t cry much. I am a tough 80 year old. But I wept when I watched your story on TV. Perhaps in part I felt sorry for myself and for my dear wife of 57 years who has vascular dementia and needs 24/7 care that I am trying to provide. She cannot talk or walk or help herself in any way. But she is always cheerful, smiling and accepting. 3 years ago she wrote and finished a book. What an incredible change in so short a time. So sad and so hard to take.

    1. Dear Bob, your story brings tears to my eyes too. Your wife is lucky your love for her has transcended time and disease, and continues to sustain you both at a time when you are both vulnerable. Thank you for taking the time to write.

  9. My mother has just been diagnosed with Alzheimers. She is 84 years ‘young’, and has been, up until Feb. of this year, a vibrant, funny, extremely vital woman. I could always count on my mother’s enthusiastic reaction to any and every book I passed on to her that I read and thought she would enjoy (i.e. Jeanette Walls’ “Half Broke Horses”, R. Minstry’s “A Fine Balance”). We were our own private book club, discussing the subject matter over tea after she devoured the book in half the time it took me to read it. She is adjusting to not driving her car, not playing bingo, not feeling confident on her own out in public, not cooking, not understaning her bank balance, etc. This terrible disease has robbed her of her independence and autonomy. And yet, she is still my mom, still able to converse with me, although confusion is the norm rather than the exception. I am very grateful that I still have my mother, and will cherish our remaining time together. Thank you for addressing this sorrowful subject, I can only hope that my children will not be subjected to the helplessness that I am feeling at the moment, wishing there was something, ANYTHING I could do to alleviate my mother’s symptoms.

    1. Dear Kim, thank you for taking the time to share your story. it’s cold comfort that you are not alone (750,000 Canadians currently diagnosed with dementia) but all of us need to keep talking and keep the subject alive. We need to lobby for a better care facilities, and more research to find a cure which experts say is still another 30 years off.

  10. Thank you for a beautiful documentary. My father has frontotemporal dementia and this disease has robbed him of nearly everything that ever mattered to him. He was recently admitted into an acute care hospital while awaiting a long-term care bed. The care he has received there is life-sustaining but nothing more – certainly not enlightening, nor engaging or even dignified. If this is the best we can do for this vulnerable population today, I greatly fear what the care situation will be like in another 30 years, when it may be my turn. Thank you for producing this thought-provoking piece.

Leave a Reply to The Blog Fodder Cancel reply

Your email address will not be published.

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>