I quickly learned that Alzheimer’s is a progressive disease, and the rate of progression is variable and, at times, patchy. Just when it looks to be hardly an issue, it can catch a carer unexpectedly! In Dorothy’s case, it seemed to progress slowly at first. Then, when I was becoming complacent and coping well (for the most part) her behavioural changes became more frequent, indeed accelerated, and quite diverse! Those mood changes often fooled me because they were interspersed with flashes of her earlier complete lucidity and capability. It’s a tricky time and it needs vigilance, patience, and tolerance (also love, and….lots of other sometimes scarce attributes!).
How could those changes bolt ahead so quickly? But they did, and there was no turning back. We had begun the long dementia road together. Our lives had been changed and our interactions with family, friends and shopkeepers took on a new perspective. Like so many others before us (and with us!), we began our new life journey along a rough road to an uncertain destination……
Now, a long way down that road, and with Dorothy’s death last April, I will continue to chronicle some of the times we shared in her later years, in the hope it just might be helpful, even if only to one person, to know they are not travelling alone, and life really does go on, despite Alzheimer’s disease having changed Dorothy’s life, and mine, forever.
I remember in those early dementia days how Dorothy staunchly resisted allowing me the freedom of the kitchen – that was her territory! As part of a farming family, she’d been used to country fare and inherited her mother’s flair for good home-cooked meals. Dorothy was a superb cook, and I am living proof of her culinary skills.
But I recognised that in the more recent years of her Alzheimer’s, after cooking for us both, and five children from birth to adulthood, a new household hazard was emerging. The risk to her of burns, cuts (and possible strange food mixes!) could easily have become a nightmare, not to mention the spoilage of food and damage to kitchen gear. Some things just had to change!
Fortunately, our children had long ago all married and fled the coop. With only the two of us left at home and with Dorothy’s home skills fast slipping away, it was time for me to become both the home manager and her carer. No choices. I needed to manage everything for us both, ready or not.
Home help for hygiene and cleaning was the first move. (To be continued)