Family Stories – Sibling 2

Family Story From an Adult Child

My mom and dad have always been pillars of unconditional, kind, and calm love. My mom wasn’t hugely social growing up, but had a wicked sense of humor, and always created a healthy, comfortable home. Now that I am a parent, I have such admiration and appreciation for all she did with such great love, with such grace.

I began to notice lapses in Mom’s memory around 2015, and also noticed that she was becoming quieter and more withdrawn in conversations. She shined with joy when around my kids as they were born and in the toddler/childhood years, and these are such special memories for me, and for them.

I eventually asked my sisters if they were noticing anything, and they agreed, but we also all deferred to my parents’ privacy and knew that they were aware and monitoring, and fully trusted Dad’s decisions and communication with us. While we have always been a close and loving family, we had not been a family who openly talked about emotions or confronted challenges openly, until this past decade. As Mom’s cognitive abilities declined more and began to interfere with their travels, my dad’s openness and communication began to positively change the way our family supported each other; the open communication and ‘teamwork’ approach have not only allowed us to journey with Mom through dementia together, but have also strengthened the way we support each other in every area of life. Dementia/Alzheimers can isolate and divide families; my Dad’s care and leadership has strengthened ours, in ways that will create generational change.

I live several states away from my parents, so have been able to visit several times a year, usually bringing my children along for a holiday and vacation. They always enjoyed playing with Grammy at home, but her mobility and comfort in outings diminished over the years. As a daughter, I began to grieve the loss of my “mom” as I knew her, and adjust into more of a caregiving support role for my dad.

One pivotal memory of this change was in winter of 2017, when my three children and I visited for a week after Christmastime. It was a week of good celebration, happy times, and playing in the snow. At one point, while playing with my kids at a nearby park, I hit my head on a slide and deeply gashed my forehead. I returned home and tried to quell any alarm, holding blood-soaked napkins on my head and hair. I met my mom in the kitchen and reassured her I was fine, but needed to go clean up in the bathroom. When I returned upstairs and saw my mom again, she remarked, “Oh, hi, you’re home! How was the park?” Even as a grown adult, I was devastated that my mom didn’t remember – from just minutes before – I’d been hurt. This marked a shift for me in realizing my role as ‘child’ was shifting, and that anticipatory grief was beginning. I wish I’d had more time to talk to her about parenting teens, about aging as a woman, and about her life memories and experiences. I wish I’d been brave enough in the early stages of the disease to tell her really how much she means to me, how grateful I am that she’s my mom, and that we would all be here loving her, respecting her, and valuing her through this disease.

I think my mom stopped ‘knowing’ who I was a couple years ago, about 2021. I have learned to reintroduce myself at every waking, or every entry into a room. And yet there are times of emotional recognition for sure. Her bright blue eyes will bore into mine, with a hand gripped, if only for a few brief seconds before clouding over and turning away. At a recent visit, she excitedly gripped my hands and led me sternly to the piano, which had been a centerpiece of our childhood and one of her passions. It is only when I am here that she will lead someone to the piano, and sit in the chair next to it to listen while I play. And, I’m grateful for the humility and acceptance that my dad fosters in all of us caring for Mom together, as her mood switches and it’s a ‘guess who is in good graces and gets to help at this moment’ scenario, and we just roll with it, and laugh, and support each other as best we can.

As of 2023, I continue to travel to visit my parents several times a year, as often as I can. I will strive to make these visits a priority in the year(s) ahead, and am fortunate to have a supportive husband, career, and finances that make it possible. More frequently I take the long weekend, and even a week in summertime, trips solo, so that I can fully support my dad and provide respite caregiving. Once or twice a year I bring my children (now teens), and we have begun renting a vacation house nearby instead of staying with my parents, so that they can see Grammy and also have fun holiday time with Poppy – skiing, hiking, and local travels. For the last two years, Dad has been able to take a 3-4 day trip to visit us in Seattle during summer, which has also been a joy for all, and is only possible because of Jennifer’s commitment and flexibility as a care partner.

Jennifer knows that my siblings and I are also critical support for my dad, and I’ve made sure to have open communication with her. She knows she can contact me in the event of any emergency or concern, and during a few health issues with my dad, this communication was vital. It is also invaluable to be able to hear her perspective (based on her training and experience with other families) about my mom’s progression, and how to best support my dad.