By Michele Rufer
I am Michele Rufer from Mill Creek, WA and I was a stay-at-home mom for my two kids most of their young lives. My husband and I will celebrate 25 years of marriage next year. I started my own business in 2013, which allowed me the flexibility to set my own hours. It was so great when the kids were little, and has been invaluable since my mom was diagnosed with dementia. I participate in the Snohomish County Walk to End Alzheimer’s with Team Grammy, in honor of my mother, Barbara, who has dementia.
I remember the day of my mother’s diagnosis too well. Everything changed. My mom, dad, my oldest brother and I all went with her to hear the results of her tests. It was overwhelming and shocking. I recorded the session to play back for reference, and it came in handy, as I have referred back to it a few times. It is hard to believe it has only been two and a half years since then. So much has changed.
When I was growing up, mom always had a smile on her face. I am the youngest of four and the only girl in the family, so mom and I always had a special mother-daughter bond. Mom was the most loving, inclusive and positive person I knew. She made friends wherever she went. She absolutely loved working with people. Her favorite job was for Lamonts where she worked in customer service. She received many letters and awards for her incredible service and work ethic. She always treated people kindly, on one occasion even starting a donation fund in the break room for a coworker who had gotten a parking ticket. She always wanted to help and often put the needs of others above her own. Her caring heart showed in her work.
We loved spending time together! We would bake, craft and scrapbook. She was so creative. She loved to sew and when I was little, she would make clothes for me. Sometimes we even matched. She even made the dress I wore to my senior prom (my husband was my prom date!)
When mom began showing signs of dementia, we started to notice some little things at first — forgetting names, places and dates, and she would leave things open like cupboards and doors. She would repeat stories or get stuck in loops of conversations that we previously had, or confuse me with my daughter in photos.
Then one day, she came over for coffee and, as usual, I gave it to her in the mug we kept especially for her. She used it every time she was at our house. She asked me if I got a new cup. It scared me.
At first, we were told it could be situational depression. We had just experienced a loss in the family and thought that could have been an explanation, but it kept getting worse, so we moved forward with some testing. The process was long, and we were expecting to hear that she needed a medication change and that could help. At that point, she was completely independent. She was still making the long weekly drive to her bible study group, visiting with friends, quilting, and traveling with my dad. Everything changed the day we went in for her diagnosis.
I think more than, “You have Alzheimer’s” my mom heard, “You shouldn’t be driving anymore.” We made it through the hour-and-a-half of doctors and nurses speaking at us. Mom hit her breaking point long before a social worker ever entered the room. She sobbed all the way home. It was so sudden, and it felt to all of us like the rug had just been pulled out from under our feet. We were also told that she needed to be monitored 24/7, so life for all of us changed.
Mom’s symptoms progressed pretty rapidly, and I could see that we needed more resources than we had been given. So many of the resources provided to us did not suit our needs, so I went looking for help and found the Alzheimer’s Association. I found two local support groups that we could attend, so Dad picked one to go to while I stayed with mom, and I went to the other. These groups have been a key part of getting myself through this. When I look back on this journey, almost every step we took came from a resource either directly from the Alzheimer’s Association or from a recommendation from someone in my support group.
My mom went into an adult family home on March 1 of this year, just as everything was locking down for COVID-19. As hard as it has been to not be able to hug her or to visit her daily like I would like to, I am so grateful for the incredible care she is getting. I get regular video calls from the home so I can see how she is doing. It isn’t at all the same as being able to hold her hand or give her a hug though. She has turned 80, had her sixtieth wedding anniversary and celebrated Mother’s Day all while away from her family, and I would love nothing more than to be able to give her a big hug — but right now, I can’t. It is truly heartbreaking.
I once heard someone say, “If you have seen one case of Alzheimer’s, you have seen one case!” Every journey is so different. What I found so helpful was to be in a room (whether in person or virtually) with people who have had similar experiences, so you know you are not alone. I cannot recommend the caregiver support groups enough. This disease can be so isolating, and I believe in the power of community. We are fortunate and have strong family support, but we have not been through this before and we can’t say thank you enough for the help we received!
Team Grammy is the name we picked for our Walk to End Alzheimer’s team because it sums up who my mom is. She is a mom of four, grandma of nine and great-grandma of nine…but everyone calls her Grammy! We have nieces, nephews, grandkids friends and even members of our support group on the team. It has been a thrill to watch it grow and grow!
We participate in the Walk to End Alzheimer’s because in many ways we are feeling so helpless in this fight. This gives us a place to put our energy in mom’s honor and supports research efforts by the organization that has supported us on this journey. I have hope that a cure will be found in my lifetime and that we can all be a part of that.
The world may look a little different right now, but one thing hasn’t changed: our commitment to ending Alzheimer’s. This year, the Walk to End Alzheimer’s is everywhere — on every street, trail and treadmill. We’re moving forward to end Alzheimer’s. Join the fight at alzwa.org/walk