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The joys and challenges of caring from far away

Although it was not easy, I’m grateful I had that time with my Mom when she probably needed me most.

I always felt extremely blessed to have an amazing Mother, she gave me all the love and support I ever needed. My family moved across the country, to British Columbia, so far away from Mom in beautiful Charlottetown, Prince Edward Island. We didn’t know how our decision to move would make it incredibly hard for me to share that love and support.

My children were the first to notice the early changes in Mom. She made less contact by phone or letter, she missed a birthday, her vocabulary was smaller and simpler. We assumed this was just “age related”.

But when Mom came to visit us here in BC, we realized that things were not right. On each Scrabble move, Mom needed to check the number of letters used. She still loved our dog but could not remember her name. She was the same person, but some things felt different. We worried, talked to her about it, guessed… and then worried more.

When Mom returned to the island she went to her doctor who, after doing some tests, eventually gave her a diagnosis of dementia. She was somewhat relieved. It accounted for her fumbling for the right word, her frustration at herself at forgetting and losing things.

We were, in all honesty, devastated. How could this funny, loving, guiding person, with no other ailments, have dementia? How could we all support and show our love and care from so far away?

We introduced easy to use technology to enable video calls. We listened more attentively to what was and wasn’t being said. And we planned regular visits with Mom. My children as young adults went and spent time by the beach. Mom felt a bit isolated when we were not there, so we also talked to Mom’s friends.

A few years before the diagnosis, we had as a family all talked through our wishes for the future, and together had recorded Mom’s thoughts and wishes. This was to prepare for when Mom got to the stage where she was not sure what a decision was! Planning at the time when everyone was together, was now much valued as we knew that we were doing the right thing. I would urge people to tackle these discussions early, my children were young adults and learned so much more about their grandmother from this.

During my visits to Charlottetown, I found out more about care in the community. There was an adult day health centre, among other things. Mom enjoyed it for a while, then changed her mind and did not wish to go. Mom was very against having who she considered to be “strangers” in her house. This made it hard, or near impossible, for home care services.

Mom came for a lengthy stay of 5 months in BC. We tried to involve her in everything, and although she was happy to be with us, it was clear that she was missing the familiarity of her daily life at home. Having her live with us permanently here was, sadly, not an option.

I made the decision that I would return to live on PEI to support Mom. I found work there, and was able to rent a small apartment. This was not an easy change but was made possible by my family back in BC who were caring for my pets and home. I missed my children and friends; and it was expensive with all the flying back and forth. I stayed for 3 years until Mom passed away.

Although it was not easy, I’m grateful I had that time with my Mom when she probably needed me most. She even remembered my name near the end.

 

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