The doctor has just told me my mother has dementia. I weep in her office and say, “You mean someday my mom won’t know who I am?” The doctor takes a deep breath and tells me I’m getting ahead of myself.
My mom and I have the same amazing doctor. But part of what makes her amazing is her frank and matter-of-fact delivery. This is a great skill, unless you’re the recipient of a dementia diagnosis. Much too quickly and matter-of-factly the doctor warns me about what to expect. “It’s a progressive disease, it will get worse,” and “we need to get her adequately medicated, which might slow the onset.”
She tells me I should get a Power of Attorney signed immediately and consider putting her in a home. It is all just too much for me to grasp. I can’t believe she has dementia – it was her biggest fear come true. My poor mom. I’m heartbroken for us both. My mind is racing with thoughts.
What does this mean for my mom? What does this mean for me? How will things change? What do I do? How do I live without my mother? Will my mother be at my future wedding?
I leave the doctor’s office, and for the first of many, many times in the months to come, I walk into my brand new beautiful (but tiny) house. I lay down on the new walnut floors (which still smell like glue), and I sob. My face puffy, my eyes red, I cry more. Molly and Jaz (the dog and cat) watch. Their compassion makes me cry harder, as even they know something is wrong. I don’t want to live a day without my mom, let alone the rest of my life. How can this be happening? That night I stopped sleeping.
It took six months and what felt like two hundred doctors appointments to get an accurate diagnosis, and about a year to get her medication equalized. My mother has a frontal temporal and Alzheimer’s diagnosis.
There were signs. I ignored them.
In mid 2006 (a year and a half before the diagnosis), we take a mother/daughter cruise to Alaska. I don’t realize anything at the time, but looking back I see the signs. She was up every morning at 5am and had no sense that I was still sleeping in our 40 sq-ft room. These can be common attributes of people with frontal temporal dementia. They become self-focused and lack awareness of others. At the time I just thought she was getting older and becoming more stuck in her ways.
In December 2007 (three months before diagnosis), my mom picks up $1,300 worth of heaters for my new house. She pays cash. She leaves them on the sidewalk outside the house. It’s snowing. A week later I’m at a dinner party at her house. I leave my car to take a taxi home. In the morning I discover she has driven my car with the emergency brake on. It was a Mercedes. “I couldn’t get it off,” she said.
That’s when I thought – this is a problem … You just can’t deny there is a problem when there are eight bowls of popcorn in the dining room.
In January 2008, (one month prior to diagnosis) in her house I find eight bowls of popcorn on the dining room table. They were fresh so in I started eating. Within seconds my mom looked at me and asked the first of many, “Are you done with that?” enquiries.
The bright side of having Alzheimer’s
There is something to be said about the gift of my mom’s disease – at least in our case. There are many that suffer with Alzheimer’s who are angry or distressed, my mom is not one of them. She is happy as a clam and you can tell by the big smile on her face. She is easily re-directable, is always up for a walk and enjoys doing arts and crafts. She delights over simple things like visits, puppies and candy bars. That being said, you take away her TV and all hell will break loose. When I moved her, I set the TV up first – listen, I’m no dummy.
Life can be hard, we all have worries. My mom certainly had worries, especially when her friends started dying. She used to worry about her company and her employees, she used to worry about me, she used to worry if she had enough money to retire. She used to worry about her community, about the state of Canadian politics and why the paper hadn’t been delivered on time.
Now, she worries about nothing. Zip-zero-zilch. She is happy – how could she not be? All her needs are cared for 24/7. Her meals prepared. All the doctors come to her, as well as the podiatrist, obstetrician, hairdresser, dentist and she can have in-room massages. Then I come to visit and get ordered around: Tricia, move your head – I can’t see the TV. Did you bring me any candy? Where’s my dresser? When are you going to take me for ice cream?
Trish is the publisher of My Crazy Mother – a blog that chronicles her journey of caring for her mother with dementia. Born and raised in North Vancouver, all Trish ever wanted to do was explore her passion for telling stories. During college she made a Leo award-nominated documentary Mi Pasion. After college, she intermixed working in the film industry with travelling the world collecting life experiences. Trish spent a year at the Canadian Film Center in Toronto where she honed her storytelling skills. After her mother’s diagnosis in 2008, she took a few years off to care for her while completing a Master’s degree in Communications. Recognizing the importance of family legacies and how easily generational stories are lost after a diagnosis, Trish is now focused on preserving memories. In addition to the blog, she is building Memory Box Movies, a service which captures the stories of our loved ones on video for generations to come.