Gavin #ilivewithdementia

All during our married life, my wife Beverly and I had a mantra: “Live. Laugh. Love.” Even though Beverly has dementia now, we still live by those words.

Beverly was still teaching grade two when she first realized something was wrong. She’d be taking her class of seven-year-olds to the gym and she’d forget where she was going. But Beverly was clever – she found a way around it. She’d say, “Who was listening? Who knows where we are going?”

That was back in 2005. We went to the doctor and were told that she had mild cognitive impairment. While she left work in the middle of the school term that year, I was hoping her condition would stabilize. But as the years progressed, she continued to develop symptoms, such as repeating questions, being confused and feeling sad, angry and frustrated.

In January 2017, we finally heard the word “Alzheimer’s” from a Geriatric Health Team member. I denied it at first, and only told our adult children about it. But when Beverly went to a care home last January, I started opening up to friends. I found that to be helpful because lots of people know others with dementia, and therefore I get lots of indirect support!

As Beverly’s dementia progressed, we had a tragedy in our family: our oldest daughter, Krista, died of cancer when she was only 35. Beverly always used to ask, “Where is Krista?” I finally had a ring made with Krista’s name on it, and Beverly would kiss it. Now, though, she doesn’t seem to know what the ring means anymore.

It’s painful for my son, daughter and me. Even so, I know that I have accomplished a lot with Beverly, and it brings me meaning and purpose to be her caregiver. I used to think I wasn’t doing a good job. She would say, “Fix me, Gavin.” I’ve learned that, while I can’t fix her, I can do the best I can for her. Caring for her is not just something I have to do. It’s something I want to do.

Beverly was a positive person, and others were drawn to her. She’d tell people, ”You’re beautiful!” Just recently, she said that to me. I am glad I am beautiful in her eyes!

Moments like these show me that we can still live, laugh and love.

 

Here are my tips to help you understand:

  • Make sure you take care of yourself. I got counselling from different sources and I attend a support group. I do this even though my family, friends and community are very supportive.
  • Don’t leave care home plans to the last minute. Both of you will be impacted if plans aren’t made in a timely fashion.
  • Listen to the person you are caring for, and be accepting and patient. If they ask a question over and over, remember that to them, it’s the first time they’ve asked it.
  • Tell people not to take puzzling interactions personally. As the caregiver, you can explain things, and if the visitor would like to know more, a discussion can be opened.
  • Advocate for the person. It might be exhausting and frustrating at times, but who else is going to do it?


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