This is the second time I've shared the dementia journey with someone I love. It’s a long and painful road that has been punctuated with overwhelming bouts of sadness and uncontrollable fits of laughter. Seriously, if I didn’t laugh at some of the outrageous things that have been said and done, I would have lost my mind.
Together for nearly 70 years, my parents shared a beautiful life before dementia. My Dad lived with vascular dementia for seven years before his death four years ago. Mom is now living with the same disease.
Although there were some very broad similarities in their dance with dementia, their overall experiences were quite different.
Dad remained physically strong throughout but stopped speaking about 18 months before the end of his life. Mom, on the other hand, has remained very chatty and engaging but is physically frail.
The first time it truly hit me that Dad's brain wasn't functioning properly was when he was unloading the dishwasher. As he was sorting the cutlery, he suddenly froze. He looked confused, and then embarrassed. He didn’t know how to separate the silverware. It was soul crushing to see my confident Dad so completely defeated by a spoon and fork.
A few months later, my parents were having a garage sale in preparation to move to a smaller, safer property. The Dollar Store-like driveway was humming! Dad came up to me and ushered me to the side of the house. With a $20 bill in his hand, he quickly rhymed off a list of items and the cost of each. Then, he humbly said he didn’t know what they totalled and asked if I could tell him how much change to give the bargain shopper because he didn’t want to get it wrong.
Over the years, Dad went through many stages.
He was angry - so very angry - in the early days. Then he became very affectionate, animated, funny and vocal. It was a beautiful time for us because Dad had always been quiet, so to hear him declare that he was proud of us and be gripped in a bear hug at every greeting was wonderful. One of my favourite memories is of the family singing Rudolph the Red Nose Reindeer at Christmas. When we got to “do you recall, the most famous reindeer of all,” Dad sang out in a deep baritone “….of course I don’t!!!” The song ended as we all collapsed in laughter! Eventually he got quiet, and then stopped talking all together.
Conversely, Mom’s speech continues to be clear, thoughtful, and enthusiastic. It is also oh so very repetitive. I often start changing my answer when the same question has been asked 12 times in 10 minutes just to amuse myself. While Mom can talk all day – and sometimes does -- the strength and ability of this former athlete to move, however, is significantly diminished. Some days, her brain and her body seem to be totally disconnected; her feet and shoulders will be pointing in totally different directions; she won’t know how to go up or down stairs; she will try to crawl into the car; and, she loses her balance and falls often.
Mom also worries – a lot. This is not new but the subject of her angst is. I often find her in her room totally distraught. She will say she must have stolen the furniture and knows she is going to be punished. Other times I find her crying as she is hiding or packing her belongings because she believes she has no money and will be living on the street. On these occasions, it takes much time and effort to console and reassure her.
One of the most painful things for me to watch was the agitation of my parents as everything and everyone became unfamiliar to them. It was difficult to watch Dad lose himself. It’s harder with Mom.
Lessons Learned:
Every journey with dementia is as unique as the individual with the disease
Big changes that impact the one(s) you love will also impact you
The days do not get any easier but laughter makes them oh so much more bearable
Embrace the joys that come at unexpected moments