The deep mystery of the brain becomes the unfathomable fog of guesswork surrounding treatment and care for people with Alzheimer’s and dementia. We are learning in leaps and bounds, thanks to the advent of and advances in brain imaging technology. But in reality we know very little, and all existing treatments are a best-guess scenario. … More Lesson 18: We do not know.
The other day I walked quickly before a rainfall to secure a lone taxi. I was just behind a man who, as it turned out, also needed the taxi. A rare gentleman, he asked me where I was headed and offered to share his ride. As we awkwardly made small talk in the back seat of the cab, I mentioned that I had moved to the area to care for my parents, both with dementia and Alzheimer’s. … More Lesson #17: Help Help Help!
There is so much about caregiving that makes me sad, and looking back is a big one. Mom seems to be moving into an advanced stage of her Alzheimer’s; she has recently become more confused, less willing to get out of bed in the morning, and less connected with reality. She’s having trouble going to the washroom on her own, she struggles with her fork and knife, and her appetite has decreased. Along with her increasing inability to express herself, it’s truly heartbreaking. … More Lesson #16: Look Forward, Stay Present
My mother has shown signs of “sundowning,” which is a peculiar behaviour in some people with Alzheimer’s. The name is apt; when the sun disappears, the change in light can trigger confusion and agitation in the brain. I noticed this in my mother during the last months of winter. At around 6 p.m., she would start to become restless and uneasy, a bit “clingy.” I assumed it was because she didn’t want me to leave, having become dependent on me and our other caregiver. … More Lesson #15: Question Everything
My older sister, who lives on the other side of the country, has a rough time hearing about all the changes that my parents are experiencing. She’s grateful they are being well cared for, but finds it emotionally distressing to follow their journey from afar. In the past few years, she has made the trip home as often as possible, and for as long as she can. She’s here for a month now, staying with them and offering me some respite. … More Lesson #14: The Cortisol Curse
My mother was often my first phone call when I was pissed at a colleague, thrilled about a new writing challenge, or just feeling blue and needing some cheer. She’s been there from day one, helping me put things in perspective and providing unconditional love. My Dad, too, has always been a kind and generous mentor, advising me in my career and with financial matters. I can’t thank my parents enough for j … More Lesson #13: Don’t Forget To Laugh
I’ve been dating an odd assortment of women for the past two years. My single friends are busy tweaking their eHarmony profiles and complaining about how hard it is to shop for lovers. I can relate; I’m looking for that perfect match, too. But the only partner I’m interested in these days is a caregiving partner. And finding that match has proven to be challenging. … More Lesson #12: The Dating Game
The art of distraction is an easy one that I was so relieved to learn about. As simple and absurd as it sounds, distraction is a powerful tool in helping people with dementia and Alzheimer’s (and their caregivers) cope with repetitive behaviour, either verbal or physical. … More Lesson #11: Squirrel!
I have been in a mild depression for weeks, without any creative energy to lift me up and out. I’m no stranger to depression; it’s not the first or last time. When I was working for clients, it was relatively easy to take the time necessary to recoup and recharge. Nobody needed to know that I was down and out, except the people I trust to love and support me during those times. Now that I’m a valued caregiver, though, I can’t just “not show up”, and showing up with a positive frame of mind is more important than ever… … More Lesson #10: Just Show Up
I suspect that many caregivers live in a state of suspended animation, as if their own life is on hold. I’ve had this feeling a few times in the past two years — I turn 60 this year, and I know I should be planning my retirement, but it doesn’t seem appropriate or feasible. I keep renewing the lease on my apartment thinking – how permanent is this living arrangement? How long will my parents need me? It’s impossible to know. … More Lesson #9: Who, Me?