“What We Have Left” – Rick’s Story

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.

“A Christmas Miracle”

This time last year started a life-changing journey for my family and I. My 53-year-old mother was lost for three days in the brutal Illinois winter weather. Leading up to this event, we had noticed changes in her behavior but didn’t know what to attribute it to. She had told the family she would not be at Christmas that year because she didn’t feel her car was reliable enough to get her from Bloomington to the Pekin, IL.  On Christmas night, we received a call from her significant-other asking when she had left to head back home. There was instantly a feeling of panic. My uncle and I drove around most of the night looking for her along different routes she could have taken, but there was no sign of her. Detective Jeff Engle of the Bloomington Police Department contacted me the next day to discuss the circumstances and what his plan was to find her. My sister and I also started a Facebook post begging for anyone and everyone to keep a look out for her and to share information about the search. 

Me, my son and my mom

Eventually, she ended up using her credit card which sent the search to Mattoon, Illinois. On December 27th, her car was found abandoned in a residential area of Mattoon.  It felt like our worst fears were coming true. My family and I headed for Mattoon to help in the search. Later that day, I received a call from Detective Engle saying my mom was found alive and was with the State Police. We couldn’t get to her fast enough.  I will never forget the feeling of being able to hug her again. My family and I say that it truly was a Christmas miracle that she survived. We even got to meet the gentleman that found her and saved her life. We believe he had to have been a guardian angel here on Earth. Turns out, my mother went for a drive and her car had run out of gas. That night, she slept in her car without any heat whatsoever. The gentleman who saved her life found her the next day and gave her a place to stay.

Me, my sister and Detective Engle

The following handful of months after finding my mother were just as tough. It was hard for her to comprehend that something wasn’t right, and couldn’t really understand why she wasn’t allowed to drive anymore. She was resistant to help find answers and did not like all of the doctor appointments. After enduring many tests, we finally received the diagnosis of Early Onset Alzheimer’s disease. While my family and I were expecting this diagnosis; it was still a punch to the gut. The diagnosis was earthshaking. However, it brought our family closer together. We have a deeper understanding of patience, compassion, “don’t sweat the small stuff” and unconditional love. We don’t know what the future looks but right now my sister and I still have our mom. We want to have good memories and enjoy her company. While this journey is scary and somewhat unknown, we have each other, and we have an opportunity to make the most out a bad hand of cards.

At times, this journey feels very lonely and isolating. I do not have any friends that can really relate to what I’m going through. I’m only 32 years old. My younger sister and I are just starting to create our own families, and we need our mom now more than ever. On the other hand, we have met some amazing people along the way. We even participated in our first Walk To End Alzheimer’s in Peoria this year on October 13th. To see that many people come together to support a cause that so quickly became front and center in our lives was a wonderful reminder that we are not alone.

For those just starting to navigate through this journey; keep your chin up and try to find the joy. There isn’t a how-to book for this, so do the best you can and lean on those in your support system. And remember, you are not alone!

By: Lindsay Edwards