Up close: Living with early-stage Alzheimer’s
One couple shares their experience of managing the disease and living life to the fullest.
To outsiders, Geoff and Andrea look like a typical couple enjoying their retirement. They’re both lively and remain physically fit after decades of hiking, running and exploring the world together. The couple speak fondly of their family and dote over Trunks, their adorable dog who greets visitors with a hearty bark whenever the doorbell rings at their beautifully maintained house in Calgary. What isn’t immediately obvious is that Andrea was diagnosed with Alzheimer’s disease in 2021 after several years of noticing signs of cognitive decline.
Both Geoff and Andrea work hard to ensure their quality of life is maintained while they deal with the challenges dementia brings. Thanks to the use of technology and programs like MedicAlert’s Safe and Found program, people like Andrea and Geoff can continue to live life without worrying quite as much about the potential dangers that come with wandering or bouts of confusion. Here the couple share some of their experiences with their journey thus far.
Q: When did you know that Andrea may have dementia?
Geoff: Four or five years ago Andrea started forgetting things like PIN numbers, and certain paper-related complexities were more difficult to complete. We were on a hike in the Pyrenees with our son and we hiked up to a hut. We were having a break and Andrea said that she’d head down a bit ahead of us. We thought we would catch up to her after a half hour. When we didn’t, we knew something was not right. We found out that instead of going down the trail, she went up. That was in 2014. So, there were sprinklings of indicators as far back as that.
Andrea: I got lost. All of my life, even as a kid, I’ve had no sense of direction.
Geoff: One of the things we know about Alzheimer’s is that some of the characteristics you have, whether they’re good or bad, get exacerbated.
Q: Once she was formally diagnosed, how did the two of you decide you wanted to approach your lives?
Geoff: Ever since she was diagnosed, we’ve had a plan. It literally is a written plan. We have objectives, we have a medical support team, we have a family support team and Andrea has a weekly set of activities that keep her mentally, physically and, as much as possible, socially active. I participate in several support groups and have met a lot of individuals who are caretakers. Many take a more passive approach. Our objective is to slow the progression as much as possible.
Q: What are some of the things Andrea does to keep herself active?
Geoff: She’s part of a dementia wellness program at the Vecova Centre in Calgary.
Andrea: The sessions are divided into sections. It starts with information in that they’ll read something out and then they’ll ask you questions. The second part is physical activity, so that’s great since I’ve always been very active. Then they put you in teams and you compete. I grew up with seven brothers and sisters and have always been very competitive.
Geoff: Andrea’s also got a family call book [a schedule of phone calls with extended family members] to go along with other things. She’s got a daily schedule, which she looks at to see what’s coming up. Family members make routine calls. They’re all assigned a day and a time when they call for socialization.
Q: Do the two of you spend all of your time together or are you both able to enjoy some independence from one another?
Geoff: Andrea started walking Trunks three times a day two years ago. Wherever she goes in the neighbourhood, people know her, and they know Trunks. They know Trunks because our community newsletter has a pet of the month feature he was highlighted in a few years ago. So she’s reasonably well known in the community, which is a good thing. One of the things that we know will eventually happen is wandering, and Andrea has an iPhone with the Find My app on it and both her and Trunks have AirTags.
Andrea: Trunks is my best friend. He’s wonderful.
Q: It sounds like a lot of work goes into keeping Andrea busy and able to do things she enjoys doing.
Geoff: It becomes a balance of what makes sense, safety-wise and for maintaining some feeling of independence. Caregivers make decisions on how to try to ensure quality of life, independence and safety.
If you just look at the negative perspective that you know where the disease is going, then you might become disincentivized to be proactive. Having the mindset that there’s a lot you can do to keep up quality of life – that in itself becomes an objective. Both of us used to be very active in various sports, including mountain climbing. This is like another mountain to climb. Sometimes I might seem too driven, but I see the results. And to me, it’s worth it.
Some folks might feel helpless. I feel that we’re almost like the opposite in that we’re trying to do everything that we can do. I get up in the morning knowing that not only am I helping to manage Andrea’s symptoms, but that there’s so much to do all the time to keep us busy. So I don’t necessarily have time to dwell on where it’s going. Like Nike said, we just do it.