By: Rick Planos
My family’s journey with dementia started three years ago. Like many, I was fairly naive and had my suspicions that something was wrong with my mom. I always chalked it up to an off day or old age. We finally decided as a family to have Mom tested. At the time, mom was 86 and very high functioning. She was living on her own in the family home, she had been a widow for eight years, she was taking care of her own bills, her laundry, cooking, driving her own car and even playing in two different golf leagues every summer. We were all amazed at how she never slowed down despite her age. But there were signs that something was amiss. She had more frequent bad hair days (something my mom would never allow), her grocery selections were on a third grade level ( all sweets, candy, pie and ice cream), she was missing checks, had excessive forgetfulness and this ongoing habit of answering questions before they were finished (usually incorrectly).
Once the official diagnosis of Alzheimer’s disease was in place, I moved into the education phase. While I had certainly heard the term and knew several friends who had family members affected, it was always someone else – never MY family. I learned quickly that no two cases are alike, so while you can learn from others, your case could be entirely different. I went to many classes, watched Alzheimer’s Association webinars, read books, quizzed friends and surfed the internet for advice. We were lucky that mom was fairly easygoing. She was not destructive or argumentative at first, and she accommodated the necessary changes. We even had an occupational therapist visit her 93-year-old house to point out the current dangers, and for the next ‘phase’ of the disease progression. Part of the house was remodeled to be more compliant and safe. I moved in shortly after, and I have been there for over two years. Living there opened my eyes to an entirely different level of potential dangers. You suddenly notice the four-year-old food items in the freezer, you see the laundry that doesn’t get washed, the scrapes on the car, the near misses.
What have I learned through all of this? So many things. First thing I learned was that my mom is now gone. She walks, talks and looks like my mom, but the mother that raised me and my three siblings has been replaced with this shell of her former self. That sounds more tragic than I mean it to. There are plenty of good times, and good days even. But there are no longer good weeks or months. The good comes in much smaller doses. The ‘dementia version’ of my mom still enjoys movies (although she may blurt something out mid-movie), enjoys a play or musical, loves her sweets and still gets her hair done every week. She still knows her name, my name, and many of her grandchildren’s names. She no longer drives, no longer can play her beloved golf, and this week we had to add safety knobs to the oven and stove top as she almost burnt the house down trying to cook for the first time in a year. I have learned to trust most of what the doctors say, but sometimes I color outside the lines if I feel strongly about it. I let her drive an extra year past what they suggested when she sailed through two costly private driving exams without an error. I could see the meds at night were making her worse and advocated for cutting the dosage in half. I’ve learned the value of having a community of like-minded people around to help me make the big decisions, as sometimes it is too hard to argue with family members who can no longer be objective. I have new friends who have parents like mine, we share good books, new drugs, better doctors, webinars, treatments, and the occasional game of “Can You Top That?”
I’ve learned there is humor in all this too. Some moments can be really funny – like she mixes up names of two relatives who hate each other, or uses the name of a Green Bay Packer in place of her beloved Chicago Bears. You learn to laugh at the accidents that don’t happen. Despite the sadness and loss, I still strive to learn things every week about this person who gave birth to me over 63 years ago. Last month I learned that she dreamt of being a zoologist when she started college in 1947 but gave that up to marry my dad. I learned that my dad picked her up two blocks away from her childhood home for their first date on his Indian Classic motorcycle, a story they never told us kids because they didn’t want to glamorize the safety hazards of motorcycles. A few months ago, I took mom to see a stage version of South Pacific. She wasn’t sure if she had seen it before, but as soon as it started she softly sang along to every song with a big smile on her face. I did a little research afterward and discovered what she had forgotten was one of her early dates with my father had been to see this very same play in 1950.
Mostly, I’ve learned that you become a caregiver because it is the right thing to do. Nobody plans for this to happen – nobody wants to be in this club. I certainly don’t want to read any more books that make me cry thinking of the nightmares that lie ahead. I don’t wish this on anyone. To be constantly worrying about the next fall, the next accident, or the next part of the family history to be forgotten. But this person gave me life. She made certain that the grocery budget allowed for enough savings to pay for my orthodontics. This person didn’t have a car so my siblings and I would have enough money to graduate college. And if the shoe was on the other foot, she would be taking care of me or one of my siblings today. So we enjoy what we have left of our mom and adjust accordingly.