Dementia, losing yourself and finding something precious
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My mum suffered from dementia.
My mum and I circa 2007 just after her diagnosis.
This is a very personal entry, but hopefully a very uplifting one as well. It has been 12 years since my mum passed away from complications associated with dementia - essentially at the end she had difficulty swallowing and stopped eating. She was surrounded by loved ones and we fulfilled her last wishes to remain at home until the end. It is a difficult disease to understand much less see the effects on a loved one. My mum (Mary Elizabeth Dunning Nadin) was a bright, intelligent and vibrant woman - I would hazard a guess to say that those who knew her would agree that she was fearless.
She went to university after having four children and earned her Bachelors and Masters of Education degrees, specializing in teaching emotionally disturbed children and children with Downs Syndrome. Her ability to empathize with her students and gain their trust was one of her superpowers. To say that I was inspired by her and in awe of her accomplishments is an understatement.
I would like to say that it was easy to tell that something was changing for her, however the early stages of dementia can be difficult to discern and sometimes even hidden by some people. My mum was able to find all sorts of ways of covering up her lapses in memory which we only really recognized once she received a diagnosis.
In his book Outlive, Peter Attia mentions that our brain has all sorts of backup systems that take over when one function is impaired and that those who have complex talents like speaking multiple languages, playing musical instruments etc., may have more developed backup systems making it take longer for the symptoms of dementia to be evident.
Looking back we believe that she started to really experience memory decline in her mid sixties when she started to withdraw from conversations and not be as outgoing or vibrant. I believe that was her way of compensating for not being able to follow conversations where more than one person was involved. We later found notebooks and post it notes full of reminders and helpful tips for her to remember things - she had written these to herself. It was clear that she knew something was not right and she used all of her educational skills to try and battle this disease that slowly disables neural pathways and memory centres in the brain. Watching her slowly lose herself to this disease was confusing and painful to witness.
Things she taught me during the progression of the disease.
During this time I lived in Western Canada and for a time in Scotland and while it was difficult to be remote from my parents (they lived in Ontario) we found ways of providing support and being there for them between in person visits. One of the many things I’m grateful for was the ability to video call with my parents (remember this was back in 2006 when things like Skype were pretty new - the iPhone was about to be launched and using these technologies was challenging to say the least) - it certainly helped to bridge the geographic gap between us and I would often do a nice long chat with my mum while my dad went out for a bike ride with his friends and support group. I should mention that my dad would cycle close to 100 miles a week and this was his respite from being my mum’s primary caregiver. It was a very important activity for him and enabled him to have time for himself and be a better caregiver as a result. Later we engaged home careworkers specializing in caring for people with dementia to come in several times a week to support my mum and dad.
Initially during these video chats my mum and I would catch up on what had been happening during the week and share all sorts of newsy things, but gradually the content of these chats changed and became more and more difficult as her memory declined. It was very difficult to see this vibrant, witty and sharp woman slowly lose pieces of herself.
Kory and my mum making silly faces and taking selfies (2011).
I’d like to say that I handled things well, but my type A, fix it personality jumped into high gear and I thought I could help her retain her mental functions or at the very least slow the progression of the disease. I read and researched everything I could and I was convinced that by practicing skills that she had we could retard the memory loss. What I thought was a fun and engaging way of keeping her mind active must have felt like a confusing activity much like having to continually take exams. Although my intention was coming from a good place - I was getting frustrated and she would get upset with these calls - no one was benefitting or being uplifted by them and our relationship was suffering.
My husband is a very smart man and after observing our interactions one day he asked me to step away from the computer for a moment. He took my seat and proceeded to tell my mum some very silly jokes accompanied by funny faces and actions - she burst in laughter and kept laughing until she had tears streaming down her face. Her smile was so infectious and it was clear that while my husband wasn’t “teaching” her anything, he was making her feel good and keeping her engaged and feeling part of the call.
Once the call ended we had a chat and his advice to me was to focus solely on making my mum smile - that I should gauge the success of the call by whether she smiled or laughed. Such wise advice and once I started doing this I found that our chats were much lighter and fun - we started to reconnect and she began to look forward to speaking with me again.
My biggest learning here was to make all of our interactions about her and to be focused on her reactions and enjoyment. She was much less stressed and so was I. I’m still trying to work on not going into “Fix It” mode as soon as a loved one has a challenge, but I am still admittedly a work in progress.
Getting creative
My mum in England circa 1950.
I started to funnel my energy into finding fun and creative things for us to do that would bring a smile to her face - that was my only goal for our calls and it worked a treat.
We began to play and do all sorts of things that we had done when I was growing up, such as singing and dancing - we did a fun game of chair dancing to see who could come up with the silliest movements to the music without getting out of their chair. Music was a very important part of my mum’s life and we spent time going through all the artists she loved to listen to (Tom Jones, Engelbert Humperdinck, Roger Whittaker and Neil Diamond were some of her favourites).
I also started finding books she enjoyed and I would read bits out of them - she especially liked it when I would use different voices or act out passages for her.
One of her favourites was a British author Pam Ayres who writes all sorts of fun and silly rhymes about life and one of mum’s favourites was the Wonderbra Song.
We even came up with a melody for it and she would often hum that tune.
“The Wonderbra Song” (Pam Ayres - With These Hands)
I bought myself a Wonderbra
for fourteen ninety nine,
It looked so good on the model girl’s chest,
and I hoped it would on mine,
I took it from the packaging
and when I tried it on,
The Wonderbra restored to me
all I believed had gone…
I even stumbled upon playing old Lawrence Welk shows for her on YouTube and was amazed when she started to sing along - knowing all of the words to the old songs from her childhood. As I have found during my transition into retirement - curiosity, playfulness and a willingness to create (see this blog post) unlock places that help us to return to happiness and contentment.
France will always hold a special place for me
When we were living in Scotland and before returning to Canada we planned a big family trip which involved transporting Kory’s mum from Saskatchewan, my parents from Ontario and us from Aberdeen to rendezvous in Paris and head to the Loire Valley where we had rented a farmhouse. It was logistically challenging, however it all came together beautifully and our flight arrived before theirs which allowed us to be ready and waiting for them on arrival. Kory’s mum (Anne) met up with my parents in Toronto and they all flew over together which helped them to overcome the challenges of navigating international airports..
Dancing in the living room at the farmhouse in France (2010).
My mum was still able to travel, but she was having good days and bad days by this time which meant that we weren’t sure if the trip would go ahead or not. Luckily we hit a relatively good time for her and what resulted were some beautiful memories, fun times and connection for us all. The farmhouse was a great choice as it was out in the countryside - peaceful and quiet and we could stay in and cook or relax as we needed. We purposely planned down days where we spent time in the gardens or walking around the property. I have vivid memories of us sitting at the kitchen island and drawing pictures and painting images of our travels which my mum made into a book to show her friends when she returned home.
Afternoons when we weren’t out touring around were filled with music and dancing around the living room. I won’t say that it wasn’t a challenging vacation, but seeing my dad relaxing in a hammock and napping away the afternoon knowing that there were others to look after my mum was very satisfying. There were so many special moments during evening walks and the interactions between my mum and Anne were so lovely to witness.
I am so grateful that we made the effort to plan this trip and that each of our parents were brave enough to embark on the journey.
How I use these experiences now
My mum having fun with dandelions. (2010)
As I came up to retirement, I had to admit to a concern about dementia - every time I’d forget something or had difficulty coming up with a name or fact, I’d get a little panicky - am I destined to head down the same path as my mother? It won’t come as a surprise for me to admit that I’ve continued to do research and read about dementia and while there has been a lot of great new information emerge in the last decade there is still no “cure”. What I’ve come to recognize is that the things I learned from my mother and being there with her when she was struggling have become part of my routine for remaining healthy and living my best life into retirement.
I believe that getting enough sleep is a key factor in helping our minds and our bodies rejuvenate and stay in top form. In addition, minimizing stress is also important and I do this by monitoring my reactions, breathing exercises and getting enough exercise and activity.
I also believe that having a good social network and staying engaged is crucial which is why I continue to reach out and stay connected with old friends as well as new friends like my strength training class.
There is research (cited in Peter Attia’s book Outlive) that indicates some forms of dementia seem to be linked to lack of good blood circulation to the brain and that exercise and working on overall fitness is helpful in preventing or slowing down the progression of the disease.. With the other positive side effects of exercise it just seems like a good idea to prioritize regular activity. Learning new things and being creative also helps to keep the brain cells active as well as providing mental well being (cue the photography walk!).
My big takeaways are don’t get too focused and stressed by what happened to my mum, or automatically think that this is my destiny. Spending my time living my best life and focusing on connection (my core value) is within my control and so that is what I am going to concentrate on doing.
Gifts to be treasured forever
During our last in person visit before we moved to Aberdeen I gave my mum a journal notebook and told her that this was for her to jot down things she wanted to tell me when she was having a good day or when she was having a not so good day. I had no expectation that she would use it, but it seemed natural as we have always given each other notebooks and scribblers over the years. When my mum stopped eating and we came to the realization that her time was coming to an end, Kory and I travelled to be with my parents. During that time I stumbled across this notebook and when I saw that she had filled it with notes, drawings, doodles, cut outs of cards she received and all sorts of poems and things that she wanted to remember - I was overcome with emotion and so grateful that I’d thought to give it to her and that she had found comfort in writing in this book. It is something that I will treasure forever.
When I leaf through that book I don’t remember a woman struggling with an insidious disease, but rather I see the bright, creative and amazing woman who was my mother and that is a special memory to have. I like to think that she would enjoy reading these blog posts that I’ve been writing and I remember that she was the one who encouraged me to write all those years ago.
The mums walking in the countryside in France (2010).
If you know someone struggling with dementia please know that there are some wonderful resources available to support caregiving and respite for caregivers - reach out in your community to find out what is available near you.
My mum’s journal from when I was in Aberdeen, her favourite mug and her memorial pamphlet.
I hope you’ll come back soon, share a cuppa, relax and enjoy more of my musings.
