Shutting the Alzheimer's Door

My grandmother loved pearls. She would have loved these.

As 2022 dances along the calendar, I’m choosing to do things differently.

For starters, I am focusing on Celebration as an active value, and giving back more to specific causes in my life to celebrate loved ones. In celebration of Sage Catling’s friendship, I donate a percentage of sales from the WyldeCats and Kittens Collection to local area shelters and fosters to help other cats and humans connect. I’m doing the same with other areas, too, which is where this post comes in.

My maternal grandmother, “Grammy” or “Nana,” was the seventh of eight children. From her I get at least part of my enjoyment of gardening, my love of feeding people, a dollop of sass, and possibly my inexplicable need to hoard rubber bands.

Grammy was a marvel at many things and was sought for guidance by her community. From gardening and farming to sewing and alterations, right through ceramics and on to food preservation: the woman was a treasure trove of wisdom, which she’d share over tea.

When I was in high school, she had bacterial spinal meningitis combined with mini strokes. The meningitis was discovered when she told a neighbour that she couldn’t talk now: she was drying ice cubes. She’d always been a bit eccentric (family gift), but this was abnormal even for her. The neighbour came over to check on her (she lived alone) and found she’d passed out after hanging up. The strokes occurred in the hospital while she was being treated for the meningitis. As a family, we got lucky. We knew it without the medical team telling us so, which they did. She started pulling back, which made sense to those around her: she tired more easily, even after a seemingly quick recovery.

In my early twenties, my grandmother’s behaviour left the land of Eccentric and set up camp in the realms of Erratic and Nostalgic. After driving her car into a ditch in the middle of the night “going home” to what used to be her family’s farm (the most recent owners had moved the driveway’s entrance), she moved in with my mother so she could be with family. Her medical team stated she was progressing through stages of Alzheimer’s Disease at an amazingly brisk pace. Grammy’d never been one to dilly-dally.

On “easy” days, she told us cyclical meandering stories of the secrets and necessary methods for planting chickens and gathering walnuts. We heard blended variations of childhood memories where current people swapped lives with those from the past. She mistook my sister for “some strange little girl” and called our ginormous Siamese cat “Puppy.”

On “less easy” days, she was unsettled and took great glee in decorating her speech with creative profanity beyond what she had washed my mouth out for (I was 9 the last time. I’m guessing Ivory dish soap hasn’t changed much in flavour, but I’m not willing to test that).

Her circadian rhythm inverted itself, so she was snoozing in the afternoon and able to dance a jig at midnight. She’d wake my mother by sitting on the edge of her bed and watching her breathe, as she’d done when my mother had been an asthmatic child.

We hired in-home care for a few hours a couple days a week so we could do things like go for groceries or escape into a paperback on the porch. We felt guilty for not being able to do and be all of the things Grammy needed. Her medical team told us about the hardships she would face as her brain eroded, erasing her mind and jumbling her memories before moving on to derail essential life functions. What they didn’t tell us was the challenge Alzheimer’s brings to the entire family: that it was typical for us to feel this pressure, at wit’s end, like we were failing.

After the second time she slipped from the house “to go visiting” at a pace that would put Olympiads to shame, we decided as a family that she needed a care team more qualified than we were. Some of us viewed it as hard failure. Others viewed it as reaching for help so we didn’t all crash from mental, emotional, and physical exhaustion.

Grammy was re-evaluated, and it was determined she had rapidly progressed to the outer limits of what was then called Stage II Alzheimer’s. Back then, there were only 3 stages they talked about. It was also thought she had secondary and possibly tertiary dementia of other forms – there was still a lot that was unknown about this illness.

My grandmother could focus on the tasks she set herself to for hours, such as standing bent-over and removing the screws, faceplate, and battery of the floor plates for the facility’s security system (she’d spent over 50 years working in gardens of all sizes in some capacity, so this “removal of unwanted things” shouldn’t have been a huge surprise). She was unable to remember names of people she interacted with daily, including my mother, who became “Ladybug.”

Over time, we witnessed as Grammy retreated into a room within herself. Some days the door was shut firm. Others it was left open to varying degrees – a crack here, fully open there, or somewhere in the middle. We were tickled when she came out and had great conversations, if brief ones. Eventually, the door remained closed. She opened a peep hole, like in the speak-easies: a quick peek out for a password before retreating behind the slide when entrance was denied. Finally, she stopped acknowledging the world around her as her brain started to forget about her body’s needs. Her lead doctor said that if there were a Stage IV for Alzheimer’s, she was there(the Mayo Clinic currently recognises 5 stages of Alzheimer’s).

There are now medications to help slow the progression of Alzheimer’s Disease, as well as organisations to help family members and primary caregivers. The vast reaches of the internet make accessing information, local and virtual support, etc, easier than ever. As research uncovers more about onset and how that affects behaviour and brain scans, there are more people moving to add grace and compassion to an illness that reaches much further than the person diagnosed. While more is known now than in the early 2000s, we still have a long way to go.

My grandmother’s 89th birthday would have been this January 31st.

To celebrate her, I am donating a portion of sales made through midnight on her birthday to Alzheimer’s research and support. If you would like to join me by purchasing jewelry for yourself or a loved one, you are invited to view the collections. If you are not looking to shop but would like to make a direct contribution, you are invited to do so. I will be donating to the Alzheimer’s Association. Their vision is “a world without Alzheimer's and all other dementia,” and I would love to see that in my lifetime.