Our Journey with Alzheimer's Disease: A Love Story

My late wife Jo-Anne was diagnosed as having Mild Cognitive Impairment (MCI) in 2007, at age 60. She was diagnosed as having very mild Alzheimer's disease (AD) in 2009, at age 62; 10 years later, she died of late-stage, severe AD (in 2019, at age 72), at home in her own bed.

At the time of her MCI diagnosis, Jo-Anne was overweight and pre-diabetic. I did a lot of research and told her that a better diet and more exercise might slow the disease process; luckily, Jo-Anne accepted that recommendation. With a change in diet (more fruits & vegetables, less saturated fat and refined carbohydrates) and much more exercise, she was able to lose 35 pounds in 4 months (and kept them off), and her fasting glucose fell into the normal range.

Jo-Anne got AD so young because she had the highest genetic risk factor (ApoE-4/4). This turned out to be a bit of a blessing. Jo-Anne was otherwise quite healthy. I was old enough to be wise and emotionally resilient, but young enough to be energetic. This made it possible for me to take care of Jo-Anne at home, mostly by myself. (In retrospect, it probably would have been better for both of us if I'd hired someone to help care for Jo-Anne, plus be a companion.)

Amazingly, Jo-Anne's personality, values, sociability, upbeat-outlook, initiative, interest, or appetite didn't change. She had no delusions, agitation, aggression, etcetera. She recognized, loved, and appreciated me (and her best friend) almost to the end. I think all of this may be rare. I don't know if the relatively positive course of her disease was mostly due to intrinsic factors, or was also affected by the way I chose to care for her. I'll focus on the two aspects of my caregiving style that probably had the greatest impact.

Staying active and engaged

My general approach was to avoid restricting Jo-Anne's life and freedom, to always look for creative accommodations, and to try to enable her to live as full a life as possible. I realized that the best perspective was "let's live in the present" and "enjoy life to its fullest." The future was unpredictable (and bleak), so there was little benefit in dwelling on it.

When Jo-Anne was diagnosed with MCI, I chose to drop from working very long hours to working 3/4 time (the minimum needed to qualify for benefits). Soon after, I switched to working 10–20% time (made much easier by the PPACA coming into effect, with its protection for our pre-existing conditions). I made the implicit decision to start spending my savings: spending time with Jo-Anne was worth more than a luxurious retirement.

The main way Jo-Anne got more exercise was bicycling (and walking in the earlier years, when she loved taking pictures). When Jo-Anne's shortterm memory started to fail, I got us both iPhones to track Jo-Anne. Jo-Anne always wore a "fanny pack" to carry her camera; I'd added her charged phone. I would work remotely from my home office while she was away, and periodically check her location. If she strayed into dangerous areas, or she was bicycling away from home as sunset or dinnertime approached, I would hop on my bicycle (putting my iPhone in a handlebar-holder), and chase after her.

Jo-Anne once left the house without me realizing it, and the police didn't find her until 8 hours later (one of my most stressful experiences; I literally jumped up and down to try to burn off the excess adrenaline). I bought inexpensive door alarms from the hardware store and mounted them at the top of the door. Whenever Jo-Anne opened a door, she would immediately close it when she heard the alarm.

One day, after Jo-Anne had transitioned to moderate AD, she went out for a bicycle ride but walked home. I bought a small pouch that attached under her bicycle seat and put...