It's all in the family

My mom is 75 and has Alzheimer’s. When she was in her late 50s, she told us she was losing her memory and we all discounted it. In fact, we didn’t notice anything at first. After several years, we did notice some warning signs. She was misplacing money and jewellery. She was buying a lot of things she already had plenty of – toilet paper, food, even coffee makers.

We took her to the memory clinic and they set up a baseline test for her. What we didn’t realize was, on subsequent visits, she and my father practiced the answers beforehand so the doctors wouldn’t suspect anything. My dad was afraid they’d take his bride away.

Then, on December 26, 2013 everything changed. My mom suffered a brain bleed and was diagnosed with vascular dementia. My dad didn’t want her to go to a home, so he said he’d look after her, possible because my sister and I both live very close by.

My mom got progressively worse. She couldn’t talk about the recent past because she couldn’t find it. As the months passed, her memory lost the names of people she knew and progressed to no longer recognizing them, including her loved ones. As her memory failed, her need to socialize grew and she fulfilled it by going to the grocery story every day to buy things, but more importantly, to talk to people. A trip to the grocery store took forever because she would strike up conservations with strangers in every aisle.

Mom doesn’t always recognize me. She knows she has a daughter named Michelle, but she says it isn’t me. Her visual memory of me shifts between a young child and a teenager. So I travel alongside where her mind and memory go and when she calls me ‘Mickey,’ my childhood nickname, I answer.

Whenever we go out to an appointment, I take her to McDonalds or Tim Horton’s for coffee and I record our visit on my iPad as she shares stories of the past. We have a great time. I get to learn things about my mom’s life I never knew and I get to see her in a whole new light.

Michelle’s tips for caregivers

• If you’re with someone with Alzheimer’s or dementia, join them in the time and place they’re in. It might be a long time ago and it’s as real to them as the present. Ask questions and get them to talk about it and you’ll see them light up with joy. 
• Don’t ask questions about what they’ve done today or what they’ve eaten or what they’re planning on doing and don’t talk about the future. It can be very agitating for them because they simply can’t remember.
• Go to doctors’ appointments with them and be their advocate.
• Don’t correct them. If there’s no harm in what they’re saying, let them be.
• Use pictures, videos and voice recordings to help them remember people (sometimes their visual memory won’t remember, but their auditory memory will recognize the person).
• Record their favourite music. You’ll be surprised how they can remember the words to their favourite songs.
• Avoid large groups like family gatherings. It’s exhausting and agitating if they can’t recognize people.
• Make sure they exercise as it requires focus. A good walk takes incredible concentration and they will be very tired afterwards. 
• Get power of attorney, both for care and financials.
• Put yourself in their shoes. Imagine how difficult it is to not recognize those around you. 
• Take the time to talk and record your moments together. You’ll always be grateful to have the recordings.