At the time, her passing was a mixed blessing. We were at the end of a long, exhausting, heartbreaking journey. She was diagnosed with early-onset Alzheimer’s in 2005 at the young age of 58 – but looking back her symptoms started several years before. One of the cruelties of Alzheimer’s is early on my Mom was fully aware that she was slowly slipping into the depths of this cruel disease and she feared what she knew lay ahead. By the end, those fears had come to fruition, as she was unable to move, eat, or communicate without assistance. When she passed, we took a measure of peace knowing she would not want to continue in that state and she was headed to a better place where she would be reunited with her lost memories.
When she died, I buried myself in the flurry of details and activity that comes with planning a funeral, burial, and the birth of our son. Reflecting back a year later, her journey puts much in perspective, and I hope I will remember these life lessons.
Alzheimer’s is my greatest fear
My Mom’s story is not unique. Over 5 million Americans suffer from Alzheimer’s and it threatens to reach epidemic proportions by the middle of the century. We aren’t doing enough to prepare for the epidemic or fund research to find treatments and cures. Our health care system isn’t ready and the costs of care and impact on families and caregivers will be staggering. Having watched my Mom’s heartbreaking battle, I can’t help but be haunted by the fear of Alzheimer’s. I worry not only about going through the confusion, anxiety, and pain she went through – but I don’t want my kids to have to go through what I went through as a caregiver. That’s what motivates me to stay actively involved in the Alzheimer’s Association.
Circle of Life
I sometimes wonder with a measure of guilt if she somehow decided it was time to go for my sake. Being a caregiver for someone with Alzheimer’s is mentally, physically, and financially draining. Juggling her care, my family, and career was a constant challenge. Although she was well into her Alzheimer’s journey when my daughter Alexa was born, I was glad she got to experience being a grandmother. With Luke’s birth around the corner, I was worried how we would add yet another child into the juggling act and it made me sad to know my Mom wouldn’t be aware enough to get to know him. Perhaps she felt the same and decided it was time. That would be like her. Her neighbor, Sharon, once told me my Mom was the “sweetest lady in the world – until someone messed with her kids, then it was watch out Mamma bear”! That’s a spot-on description of my Mom.
Three weeks from now will also mark 15 years since I lost my father. Losing both parents creates a giant hole and emptiness that is hard to describe. I think having kids highlights that hole. There are so many reminders – so much you want to share with them, and so much you wish you could learn from them.
It also makes me realize that along with my faith, family is everything. I am blessed with a beautiful wife and two amazing children. Since my brother joined the Army I don’t get to see him very often, but we are closer than ever. My Mom’s sister has become a second mother to me and grandmother to Alexa. Steph’s family has been a blessing as well. Having lost my father and been a caregiver for my mother by the time I met my wife, I am re-learning how to be a ‘son’ to her parents.
I have often questioned why this was God’s plan for my Mom. I still can’t answer that question. But as I look back at some of the early successes I had in life, I believe God was equipping us with the resources to provide the care and assisted living facilities she needed. I don’t know what His plan is for me, but I know He’s at work in my life.
Less is more
Nothing makes you want to de-clutter your life like having to figure out what to do with deceased relatives stuff! Out of my parents’ lifetime of possessions, nothing more than a few pieces of furniture, photos, and my Mom’s quilts had any sentimental (or material) value. Having grown up with modest means, I used to find it hard to discard anything functional. Now I can’t stand clutter. Even with photos, less is more. It’s hard to hit ‘delete’ on those digital photos, but I’m trying to get into the habit of saving only our favorites.
Do It Now
Having lost both my parents at a relatively young age, I no longer take my health for granted. For the same reason, I also know I can’t take tomorrow for granted. My Mom had recently gone back to school and learned to program. She had a job she was proud of and was happier than she had been for a long time when she lost it all to Alzheimer’s. My father’s dream for retirement was to live at the beach. He planned to work at a pier and spend his spare time fishing. He never got to live that dream. I need to do a better job of prioritizing how I spend my time. I want to make sure I don’t put off opportunities to spend time with my kids, travel, and realize my own dreams for tomorrow.
I’m thankful that a year later, my memories of my Mom are of the strong willed, independent, loving person I knew before Alzheimer’s. As the years pass, I’m sure I’ll continue to reflect on her journey. Most of all I hope she knows how much she is loved and missed.