When her mum Bonnie was diagnosed with early-onset dementia at the age of 62, Kathryn Harrison was unsure what lay ahead. Here Kathryn, who lives in Canada, explains how the dementia journey changed her family and taught them many valuable lessons along the way.
How was your mum diagnosed?
Our family’s journey with dementia began over ten years ago when my mom, just 62, started to show obvious signs of things changing. It took quite a while – probably close to a year – to get a firm diagnosis. There were delays as her family physician resisted the need for her to see a specialist. We never understood his reasoning?
And then, after he relented, it took several more months to get that specialist appointment. The specialist, a geriatrician, proceeded to run several tests on my mom, both physical and cognitive. It was only after ruling several things out, that she was given the general diagnosis of ‘Dementia.’ When I asked what kind of dementia, whether it be Alzheimer’s, frontotemporal dementia (FTD or PIck’s disease) or vascular, I was abruptly told that it didn’t matter. My sister and I suspected she had FTD but the doctors didn’t seem interested in confirming that. I have since learned she did have FTD because an autopsy was conducted upon her death in 2010.
Looking back, were there any signs before that she was in the early stage of dementia?
Yes. A few years earlier, my mom and dad had moved from the city to a small town and we were finding my mom, who was always very outgoing and talkative, was starting to be less social – more reserved and quiet. I remember my sister and I wondering if small town life was converting my mom into an introvert. Now I realise that her withdrawal marked the beginning of her dementia.
What happened after diagnosis?
Because it took so long to receive a diagnosis, we were all pretty convinced that she had dementia already so not a lot changed afterwards. It did mean that we could all stop ‘hoping’ it was something else and focus instead on ‘now what?’ As an immediate response, I remember vigorously reading many books about the disease…having several piled at my bedside at once. I wanted to get as much information as possible and probably used information as an emotional shield.
How did you tell other people and what was their reaction?
We spread the word mainly through phone calls and in personal conversations. The reaction was almost always the same, ‘But how? She is so young?’
What were the main challenges you faced and when did they happen?
The dementia journey comes with so many changes and challenges but it also brings valuable lessons and enriching moments. Changes sometimes occur suddenly while other times, they float in and out gently at first and then creep up until you realise that things have changed significantly again. At this point, what worked before is no longer working. Thus the situation can be a bit of a mess; full of frustration, stress and fatigue. In this altered state, you encounter a new set of emotions in yourself and your loved ones and likely encounter a new set of behaviours to cope with. You will also possibly need to change the caregiving roles, you may need to alter medication and you may need tools and products you have never used before.
For me, these were the biggest points of challenge; when our family hadn’t quite adjusted to the change, and were pushed beyond our abilities. On a major scale, this occurred when my father had a mild stroke while caring for my mom, making us realise that he needed a lot more support. At this time, my mom had transitioned from mild cognitive impairment to major decline and we suddenly noted she was in need of non-stop supervision – so much more than before.
On a smaller scale, I remember finding it more and more challenging to dress her. I was really struggling before I realised we needed to buy a whole new set of clothes that were looser fitting and much easier to get on. At each point of change, the first step is to note that you need to change to accommodate the new stage. Then there were always many options to assess and places to get help. As the disease progressed, our family did become better at recognising and making adjustments through these times of change, so although the changes continued, the challenge to face those changes was lessened.
Have any services made a difference?
We most definitely benefitted from some of the support services available! Early on, we had regular visits from specialist dementia nurses that mom looked forward to. She saw them as friends coming to visit. I was part of a monthly support group at the Alzheimer Society of Canada, and also had regular meetings with counsellors there. Insight and emotional understanding was plentiful from these sessions!
At certain times, we had a part-time private caregiver come to our home to help with care. When my mom was ready for a wheelchair, we had a skilled occupational therapist personally design a chair. Once my mom moved to a nursing home, we worked as a team with the staff there to offer her the best care possible. It wasn’t always perfect but through this experience, I met some of the most generous, loving people of my life.
Have any particular products or gadgets made life a bit easier?
Throughout the disease, music offered much relief and joy for my mom. We played music as much as we could. My brother created a huge library of her favorite music on an SD card and we bought her a portable player that played music on the SD card without cessation. Thus, with this technology, she could always have her favorite music beside her playing!
We also benefited from products that provided mom with meaningful activities and a soothing environment. Things like colouring books, touch & feel books, soothing lights, a faux fish tank, and memory foam pillows.
And as I already mentioned, I read and benefitted from many books. My favourite was The Memory Clinic by Dr Tiffany Chow, because it’s realistic and extremely supportive.
Any tips for other families or advice you would like to pass on?
Where to begin on this? We learned so much from our dementia journey.
Seek out expertise. There are more books available now than ever. Some books are more practical and some are more emotional. Read the ones that appeal to you.
Take support when offered. Experts have the experience to help you and guide you. You are not alone. Even if the situation is new to you, it probably isn’t for them and they may have real solutions to help you.
Play music. As I already mentioned, it provided so much joy throughout our journey.
Take pictures. You may not think you want to document the disease, but you could regret that. Looking back I wish we took more pictures of my mom during the experience.
If a product isn’t working, look for another one. If the pillow is causing discomfort or the shoes keep coming off, look for a different one. There are so many options out there. You don’t need to settle.
Has your experience of living with someone with dementia changed your perception of it?
Absolutely! Before my mother’s dementia, I naively thought it was only a memory disorder, but as you know, it is so much more! On the positive, in the early stages of my mother’s dementia we were enriched with a more liberated mother, who liked to dance and sing and have so much fun! I treasure this time. And in the more advanced stage of the disease, when my mom was in a home and we met several other individuals with dementia, I learned how varied their progression was. Because everyone has their own unique brain, how this disease affects one person will be quite different from how it affects another.
What lessons have you learnt?
My biggest lesson was acceptance. No matter how much you want it or how much you try, you will not currently be able to stop dementia running its course. Give yourself the gift of accepting this inevitable truth, and in accepting it, also accept your loved one as they are right now; still your loved one but affected by a disease.
In addition to your acceptance of the disease, you will find that some friends and family members really step up to support you while others fade away. I have learned that it is in your best interest to accept how this plays out. Let those who want to help, help, and let those that aren’t available to help, go. It is easier for you and your loved one than wasting time and energy pushing the issue.
By accepting the disease in your family and accepting who is coming along for the ride, you are free to enjoy the moment, you can welcome the unexpected and you release yourself from not always having to be in control.
Finally, I’ve learnt to value the role our children can play in the dementia journey. My children Tristin and Rory (featured in the photos above) pushed me to be more flexible, more accepting and gave me the strength I didn’t know I possessed to create an illustrated book for children Weeds in Nana’s Garden to help explain the tougher questions when they arose.
But mostly, Tristin and Rory just enjoyed that Nana was fun to play with, and they never judged her. Five years since my mom’s passing, we remain, I hope, an open, tolerant and non- judgemental family – and this, perhaps, is the most valuable lesson we’ve all learnt from our dementia journey.
To find out more about Kathryn’s book, Weeds in Nana’s Garden, by click here.