By Elizabeth Kibler
For most, 2020 will be remembered as the year we had a global pandemic. But for me, it will be the year I noticed that my dad had changed. Almost a full year later, I would learn that change was Lewy Body Dementia. We are now treading into the late stages, things that used to be hypothetical are becoming a reality; and at our 6month check-in this summer, my dad had a heartbreaking moment of lucidity and said he didn’t want to be a burden to anyone.
As we go through the planning process, a lot of people say they don’t want to be a burden to their children. Watching my dad slip away and the impact it has had on my mom will undoubtedly leave a permanent mark on my life, but I have never once felt like either of them was a burden. Obviously, family dynamics play a huge role in this. But as I think about how often we get this feedback, I wanted to share my experience as a daughter helping her aging parents.
Don’t be afraid to communicate. My dad had a brief stint with skin cancer several years back and my parents didn’t tell me until AFTER his Moh’s surgery. That’s when our journey really started. At that point I told them that I wanted to be invited into the hard conversations. There are a lot of things I never thought I’d be talking to my mom about, but no matter how hard (or awkward) the conversations are, I am always grateful for her openness.
My parents started giving me updates on their health after my dad’s cancer scare, I also asked about it more often, especially when they mentioned having appointments. Because I was more “in the know”, I was able to notice a lot of the changes in my dad early. I started asking a lot of questions, and started researching. It took several months and a lot of frank conversations, but eventually I convinced my mom to schedule a visit with a neurologist. I’ll never fully understand the grief that washed over my mom in these 6 months or how reassuring the denial felt as the reality of my dad’s symptoms set in; but I know it would have taken them much longer to pluck up the courage to start the diagnosis process if they were on their own.
Learn to ask for help. Not being able to ask for help is coded into my family’s DNA, so it’s been no surprise that this is one of the things we talk about the most. This isn’t a time for expectations or to wait for volunteers. This is a time to ask for what you need. (And sometimes you need a cheerleader that encourages you to do this!)
Remember to laugh! Maybe the most challenging task of all. I get some crazy calls from my dad. The most recent went something like:
Dad: Who is this woman in my house that keeps bossing me around?
Me: What is she telling you to do?
Dad: I don’t know, but she needs to know this is my house, and she can’t tell me what to do!
Me: What does she look like? Do you think she looks like mom? Silver hair, brown eyes…
Dad: You know, I reckon she does look a bit like your mother.
These calls are hard (and heartbreaking), but when recapping them to my mom we both choose to laugh. Sometimes this takes a lot of effort, and the hard days get their fair share of wins; but I love that I can help my mom reframe some of the heartbreak into joy and laughter.
Conclusion – It has been an honor to walk hand in hand with my parents, not only as a daughter but as an advocate, a chauffeur, and a translator. I am so appreciative that they are willing to be vulnerable and not guard me from their struggles.