Margaret’s Story

My husband Keith doesn’t like hearing the word dementia. He doesn’t acknowledge that he has it either. He’ll often say he’s “normal.” But something tells me he knows. It’s hard to accept dementia. It’s a scary disease and you don’t always want to hear the details of it because you’re afraid to experience those things yourself. But talking about it, listening and learning about dementia – these things help you prepare for what’s ahead.

After a series of hospital visits, tests and unanswered questions, Keith was diagnosed with vascular dementia in July 2020. Our geriatric psychiatrist, who we saw regularly during this time, suggested I call the Alzheimer Society of Manitoba.

When I called, I spoke with the wonderful Lynda, a First Link® Client Support Coordinator. She understood my situation and helped me through some of the difficulties we were facing. Keith has a lot of mood changes and that’s been a challenge for our family. Lynda suggested joining a support group, but I was hesitant and didn’t know if that would help me. She had encouraged me to try attending at least three sessions before I made up my mind, so I went.

The first meeting I went to, I left feeling like it wasn’t for me. At the second meeting, another care partner mentioned family-managed care, a resource I didn’t previously know existed. This resource ended up making a huge difference in the way Keith and I managed at home. By that third meeting – I was fully in.

Keith moved into long-term care in January 2023, and I began attending the support group for spouses of people living with dementia in long-term care. I just love going to this group because we’re all in the same boat. Sometimes we sit together and cry, sometimes we laugh. It’s always the highlight of my month. It’s so important to find others who truly know what caring for someone living with dementia is like.

What are some tips you would give to others experiencing dementia?

  • Phone the Alzheimer Society and join a support group.

The people there will understand what you’re going through. It’s a lifesaver.

  • Try to find a good support system.

Getting support is so necessary. Keith’s sister is a huge support for me, she is the most wonderful person. She attends education sessions with me so we can both learn more about dementia. She visits Keith regularly too.

  • Ask for help.

Don’t be afraid to ask others for help – you don’t have to do it on your own. I wouldn’t have survived last year without respite, the support group, Keith’s sister and my friends.

  • Take that break.

I’m grateful to those friends who call me and say, “Let’s go out for lunch.” Try to get out when you can because taking even a little break is good for your well-being.

  • Knowledge is your best friend.

I’ve gone to the Society’s education sessions and attended the Care4u conference. The information I’ve gotten through these experiences continues to help me understand what’s going on with Keith and give him the best care I can.

 

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