On Saturday June 29th, a small but mighty group of Lou’s Zumba fundraising warriors took to the Vankleek Hill outdoor arena in the summer’s sun to dance for Alzheimer’s. I brought a photo of my mom, and told everyone I was dancing for Diana. After the class I held up the photo of my mom, Canada Flag flying behind her in her happy place sitting on the back of her brother’s tugboat on Lake of the Woods. She passed away 11 years ago from frontal lobe dementia. An early onset and slightly more rare form of dementia that takes hold slowly but the slippery slope of deterioration is one-directional. It is sometimes referred to as ‘the long goodbye’. I would like to offer you hope and tell you this is a journey with a happy ending. I can’t offer you that but I can offer my experience and compassion for anyone entering into this downward spiral. There isn’t a bright side to dementia but there are ways to make the journey you have no choice but to follow a little more bearable.
My mom’s dementia first became apparent on our all-women 12-day sea kayak trip to Atlin Lake, British Columbia. My Whitehorse cousin, Mary-Ellen, was leading the trip. Seven of my mom’s favourite women were on that trip. My sister and I noticed our mom would retreat early from the campfire chin wags repeating “seven pm, it’s my bedtime’ over and over. We thought it was maybe being in the land of the midnight sun affecting her circadian rhythms, where 2 a.m. looks like a soft-lit dusk with sunset clouds. Two days later, we were camped in an alcove protected from the wild winds and waves of a storm. Atlin Lake is a glorious glacial lake; it can be smooth as a mirror or wild as whitewater. Both conditions require keen attention to not tip into eight-degree blue azure waters. My mom, always the cautious one, had taken off without a word in her kayak one morning beyond the protective cove without her load of camping freight or paddling buddy. She had headed out into the open glacial waters alone, breaking all the rules of paddling in the remote wilderness. My cousin sent me after her as I was one of the strongest paddlers. Towing my mom back to the campsite, I noticed she was exuberant — more like a wee child who had escaped on an adventure than an adult who had just put themselves at great risk on a freezing cold glacial lake. It was that exact moment I knew something was awry.
In the early stages of dementia, my mom had come to stay with me in Ottawa. In the morning she had found some water pistols in my home, and filled them with freezing cold water. She burst into my room and proceeded to wake me up with double-barrelled water streams. At first I was startled, but I quickly decided to join my mom in this crazy kid-like battle. She had filled the bathtub with cold water for quick refills and was running around from every corner soaking me and laughing. Eventually, she gave me one of the water pistols and we ran around my apartment soaking one another. After a while I was drenched to the core, ready to give up. My mom, however, had no off-button anymore; she was determined to keep going until the bathtub was empty. My place looked like Noah’s Ark was coming. Everything was sopping wet, and I was chilled to the bone, but that moment of playing with my childlike mom, in her purest form without adult filters, is now one of my most treasured memories.
Watching my mom, a gregarious, vibrant, fun-loving, knowledgeable English & History Teacher, decline into a non-verbal and completely dependent person was heartbreaking. When our family first received her diagnosis, I could not function. I would go to the top floor of my Government of Canada office building and sit atop the executive board room table alone, watching the Ottawa River flow by and cry. I made the right decision to take some time off work. If at all possible, I highly recommend giving yourself that gift of precious time.
I went home to Kingston to help my amazing caregiver dad and spend the best days I could with my mom. There are so many phases of frontal lobe dementia. It is an ever-changing disease. One very difficult and unfortunate stage can be anger or aggression. My mom was one of the kindest souls I’ve ever known, yet this disease had brought out a side where she needed to hit things, like a punching bag. It sometimes was people, even those closest to her, like my dad. She’d punch his arm, not hard but relentlessly and repeatedly, saying, ‘Take this disease out of me, I don’t want it’’. She used to ask me to pull her toes really hard so I’d yank the dementia demons from her body. Then she’d punch again. My mom took out most of her frustrations on my dad, her loving husband of 45 years. She had always called him “Bear”. One day at the grocery store I found an oversized stuffed teddy bear with a great big smile, I bought it. Returning home, I gave my mom the bear and said hit him instead. She looked puzzled at first but it worked. She would bop him on the head for hours, complaining that he was still smiling. It was a great relief once that very uncharacteristic phase ended. ‘Bear Bear’ the teddy bear stayed by her side. He became a companion. We would sit with my mom, cuddling the bear while watching Shakespeare in Love for the one hundredth time. We still have Bear Bear, and he’s still smiling.
I’d like to share a few things I wish I had known before going into this journey with my mom:
- Live in the moment, day by day. Try not to dwell on the future, but be aware and prepared for what is coming. Work on acceptance, not denial. You’ll be the better for it.
- Some people will back away from your lives, perhaps they are scared of their own mortality or sad to lose their friend in such a way, let them go. Don’t judge. They may be back, they may not.
- Other people, even unexpectedly, will step forward offering help and support. Accept. Graciously. These are usually people who have been down this road. Accept their hand on your path.
- Do some research. Read about the disease and its course of action. Yet, try not go to the medical library and read every single article on Pub Med that you can digest. It’s overload, believe me. Learn that balance, compassion and courage are more important than deep knowledge, unless it’s your profession.
- Read books like Jann Arden’s ‘Feeding my Mother’, and Jolene Brackey’s ‘Creating moments of Joy’. I wish both of these had been available when my mom was on her journey.
- Speak to the person you are caring for in dementia as if they were still all there. As we have no way of knowing what they are understanding, assume the best. Talk to them as you always did.
- At doctor’s appointments, if they don’t do it naturally ask the doctor to talk to the patient directly. Just because a person has dementia it doesn’t mean anyone should talk as if they aren’t even in the room. Dignity, my mom’s doctor led by great example. This applies universally, doctor’s office and everywhere in between.
- Please recognize quickly, in the very early stages of dementia, that driving privileges may be the first independent loss. While this will be very difficult, safety for all is paramount.
- Take time off work if you can. Hire a caregiver if you can. Go on adventures. Time is precious. Find time to make memories.
- Step out of your caregiver role, look after yourself. Know when it is time to move someone into a care home. It may be the hardest and best thing you do.
- Allow yourself space to grieve. Be gentle; none of this is easy, expect to go through stages of your own. Grief, anger, frustration, exhaustion, sadness, and gradually acceptance.
- Try to see the beauty in the person becoming an unfiltered, more raw version of themselves.
- Be ready for the element of surprise. My mom, even when she had lost many other abilities, could still play her favourite piece on the piano, ‘By the Light of the Silvery Moon.’ I have five versions on my playlist in her memory.
- Love them as you always have.
- Sleep. Rest. Repeat.
Donations to Alzheimer’s Society in this region can be made to https://alzheimer.ca/en/cornwall
And one from my mom only my sister will get, ‘Put your shoes on Lucy; don’t you know you’re in the city.’