Our 5 New Rules for Dementia Caregiving

November 29, 2019 ~ Contributor,  Kathryn Harrison, Guest Author

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One afternoon while visiting Twitter, I was excited to find another Canadian author, Kathryn Harrison, who just happened to be living in Ontario, who was an artist and creative director for AlzAuthors.

With an interest in caregivers for those with dementia, I was intrigued by her beautiful book, Weeds in Nana’s Garden, written with a focus on the relationship between children and a grandmother with memory loss.

With such an interesting perspective, I asked if she would contribute a caregiving related story to share with our blog followers and any friends they invite to read about it. She graciously agreed.

I am excited to introduce you to Kathryn Harrison, “creator of children’s books to help explain Alzheimer’s & Dementia, honoring my mom.”

We are pleased she is sharing “some unexpected ideas to support a person with dementia” that materialized as a result of Kathryn and her children spending time with…well, let’s let her tell the story. ~jas

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Our 5 New Rules for Dementia Caregiving

by Kathryn Harrison

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Only a few months after my son was born, we received the diagnosis of my mom’s early onset dementia. Mom was 62. It wasn’t a big surprise as she had been demonstrating many symptoms for months. Already my 2 year old daughter had a different relationship with her Nana than most kids. Although my mom often got confused, she was very playful and unconcerned about what others thought. My daughter very much enjoyed spending time with her more liberated grandmother. And as my children grew older, their special relationship with their Nana deepened from discovering several new ways of enjoying time together.

In fact, over the next 6 years of caregiving, it was through the time that my kids and my mom spent together that we uncovered some unexpected ideas to support a person with dementia. Although every person’s journey with a dementia disease is as unique as each individual, we hope you’ll find our “new rules” helpful for you.

1     DRIVE TO NOWHERE
One day when my mom was feeling quite anxious, I decided to get her in the car with my kids and head to the park. Even though mom protested going, she eventually got in and I turned the radio on as we drove away. Mom immediately started humming to a familiar song. As the song continued, mom got more and more relaxed and began singing. I turned up the volume. My kids smiled as she sang louder. We soon arrived at the park but mom was enjoying the music so much, I kept driving. “Aren’t we going to the park?” my daughter asked from the back seat, wondering what was taking so long. “Let’s just keep on driving,” I replied. We drove on and on as my mom’s singing continued. Soon we all joined in. After a few more songs had played, I turned around and decided to head back home. Mom was clearly no longer anxious and it was getting late. “We drove to nowhere,” my daughter giggled as we arrived back “that was fun!” Following this driving experience, we often took a car ride to “nowhere” with Nana and her favorite music, knowing how much better everyone felt afterwards.

2     DANCE EVEN WHEN OTHERS ARE WATCHING
My mom’s love of music was not limited to being in a car. She loved to sing and dance often. She seemed to have a “radar” for hearing music wherever we went. Stores, banks, restaurants… my mom would hear the music and if she was standing, she would start to dance. Her favorite place was the grocery store perhaps because there was room to move around in the aisles. She didn’t care if others thought it was strange…she just danced on. My young children were not old enough to feel embarrassed by this kind of behaviour, so they loved it when she danced and they encouraged it! I felt awkward at first but took the enthusiasm from my kids and decided to embrace it. Isn’t shopping for groceries much more fun when you are swaying to the beat anyway? By taking a cue from my children and not worrying about how it looked or whether it was “normal”,  we all had so much more fun dancing even when others were watching!

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3    COLOUR OUTSIDE THE LINES
Although my mom barely practised art before dementia, she filled dozens of colouring books during the disease. We discovered her interest in this activity quite by accident as this happened before the Adult Colouring Book trend took hold. When my mother sat down beside my daughter who was colouring one day, it became obvious almost immediately that my mom enjoyed this pastime. She was calm, focused and quiet when she coloured. She quite literally coloured for hours with my kids! Soon we got her an electric pencil sharpener and tons of pencil crayons and she would just go! These colourings were not inside the lines either. Whole pages were filled from corner to corner with colour. These amazing pieces showed us all that although my mom was affected by disease, she still had concentration, precision and creativity! Plus, each was rich with emotions through her choice of colour and intensity of stroke. For not only did she colour the page, but she coloured in layers, sometimes almost scratching them together. These colourings continued to reflect her deliberate, expressive choices even when she was no longer able to choose her words. I am so very grateful we found the healing power of colouring in and outside the lines.

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4     PLAY WITH TOYS
Having two young kids in the family meant, of course we had lots of toys around. These toys entertained my children, but often were very much enjoyed by mom too. Some of her favorites were musical toys that played familiar Nursery Rhymes. “Why does Nana know ALL the words?” my kids would ask as she sang out loud and clear to “Froggy Went A Courtin” or “Three Blind Mice”. I would shrug and smile. She also loved playing with bubbles in the garden. Initially watching attentively as the kids tried to burst them and then she would start to reach for them and soon was also chasing them around with the kids. Another favorite activity was reading picture books.

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My mom especially wanted to read the classics like “Twas the night before Christmas” or “The Owl & the Pussycat”. She knew the stories so well that she would cuddle with the kids in close, and turn the pages as she recited the words by heart. As mom’s language declined with the disease progression, she clutched lovingly to soft stuffed toys and also really enjoyed Touch & Feel picture books that we sometimes had with us. In fact, she enjoyed these books so much that I decided to custom make her one… I filled it with her favorite songs and poems and sewed in different fabrics, furs, and papers to add texture to the experience. When we eventually were visiting Nana in her care home, we would often bring out this book to share together. We learned with my mom that toys are not just for kids but were important tools to enjoy and share together.

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5   PICK THE WEEDS
My mom had a gorgeous garden and we often walked through it to pick bouquets. As the disease progressed and she wasn’t able to tend the garden anymore, weeds started to replace the flowers. Wild growing Queen Anne’s Lace, Goldenrod and even Purple Blueweed started to take over the beds. But that didn’t stop my mom from picking bouquets of them…sometimes even hurling the plants into the air for my kids to catch and gather! From these pickings, we made up bountiful bunches that were always displayed proudly. As time went by, instead of walking in my mom’s garden, we took walks around town, but the tradition continued and we always gathered up our bursting wild bouquets for display. It didn’t matter what you were “supposed to” do with these plants. My mom saw them as colourful, pretty and available so wanted to pick them. She brought no judgement to the activity and neither did my kids. Later on, after walking my mom in her wheelchair, my kids were often seen entering her care home with armfuls of these wild arrangements and it always made everyone who saw them smile.

Author’s Note:
Watching my children stay connected with their Nana throughout her disease was a special part of my experience with dementia. What’s more, because so much of the time that my children and I spent with my mom was positive, after our journey with dementia ended, I was determined to find other ways to bring more kids into the dementia experience. I wanted to help other children forge similar relationships with their loved ones. I responded by publishing two picture books for children aimed at helping them better understand dementia diseases; Weeds in Nana’s Garden (2016) and I Smile For Grandpa (2018). If you are interested in finding more about these publications, please visit http://flipturnpublishing.com.

When my mom had dementia, my young children and their Nana made a winning combination. I do not think we would have discovered so many things to do together if it had not been for my kids at my side. I know I learned so much from the openness and acceptance that my young children brought to our dementia caregiving experience. I hope that you will find some of our stories and new “Rules” helpful in your journey.

Kathryn Harrison is author, artist/illustrator, mother, and as daughter of one with memory loss, has experienced the heartaches of being a caregiver. Currently she is AlzAuthors’ Creative Director. There, she manages design projects and the overall look & feel of all that they do for those who write about various aspects and perspectives of the Alzheimer’s world. AlzAuthors.com

Photo credits:

  • Top photo of book “Weeds in Nana’s Garden,” illustrated and written by Kathryn Harrison.
  • Author photo, Kathryn Harrison
  • Cats – “My Mom’s colourings”
  • Books – “A touch and feel book” the author made for her mother
  • Author’s mom picking wildflower ‘weeds’ with author’s son

Copyright © 2019 Kathryn Harrison

Each day do something to make others smile and your heart sing! ~jas

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Accepting the Gift of Caregiving is sponsored by “Is There Any Ice Cream?”
Surviving the Challenges of Caregiving for a Loved One
with Alzheimer’s, Anxiety and COPD.
Accepting the Gift of Caregiving, Part One

Acclaim Health

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