It’s often painful and lonely, slow and confusing. It tests our capacity for compassion, grace, and understanding. It invokes a fear of the unknown and renders us helpless amid life’s unpredictability. For the hundreds of thousands of Minnesotans affected by Alzheimer’s disease, “the long goodbye” is an everyday reality.
Almost 12 years ago, my mother was diagnosed with Alzheimer’s. Watching a strong, proud Norwegian woman – a daughter’s hero – regress into a frail shell taken over by her own toxicity was tough to comprehend. It was a journey for which we didn’t sign up, and it was the beginning of an unsolicited crash course in life’s fragility.
For the bulk of my mom’s 12-year journey with Alzheimer’s, especially after my dad passed away three years ago, I was her sole caregiver. Confronting the sudden reality of taking care of the woman who raised me invoked emotions ranging from utter sadness to selfish resentment.
But as I struggled to grasp my family’s new normal, the disease did not wait.
At first, we barely noticed a difference. Slowly but surely, though, my mom’s mind faded, rendering even the simplest tasks into tedious endeavors. Eventually, she could no longer drive, so I became her chauffeur. She could no longer eat, so I fed her. She could no longer control her own body, so I changed her diapers.
For 12 years, life went on – until it didn’t.
On Super Bowl Sunday, I got a call from the wonderful staff at my mom’s nursing home saying she wouldn’t get out of bed. An 85-pound fraction of the woman we knew and loved, my mom had become totally unresponsive. I would soon find out that death was no more predictable than the disease itself.
As it became clear my mom was nearing the end of her journey, her body slowly began to shut down. I spent the final 10 days of my mom’s life at her bedside, 24 hours a day, waiting for her – often with bated breath – to succumb to the disease that took until there was nothing left to take.
True to form, my mom was determined, up to her final breath, to show us the strength that comes from a life worth living. My sisters, kids, and grandkids came to say their goodbyes, as if “goodbye” hadn’t happened long ago. Through tears, laughs, and more than a few trips down memory lane, we had front-row seats to my mom’s earthly departure, 12 years in the making.
We curled her hair, painted her nails, dressed her up, ate popcorn, and watched hockey. We read Bible verses, sang church hymns, and played jokes on the hospice staff. We laughed, prayed, did hand-in-hand photo shoots, and thanked her for being such a great mom.
I so desperately wanted the last memories of my mom to be how I remembered her: a strong Norwegian woman, proud of herself, her family, and her community, waiting for her Savior to call her home. But we don’t always get what we want, and instead the last memories of my mom are of a weary soul knocking at heaven’s gates. Indeed, my mom’s final days were a humble reminder of our own humanity and the inelegance of death.
I whispered in her ear, “I love you, Mom. You can go now.”
Alzheimer’s disease affects our moms and our dads, our brothers and our sisters, our neighbors and our friends. The disease is an equal-opportunity destroyer of minds, knowing no gender, race, or class.
More than 94,000 Minnesotans live with Alzheimer’s, and that number is expected to grow as baby boomers continue to age.
Public policy should reflect our aging population. As chairwoman of the Minnesota Senate Family Care and Aging Committee, elder-care protections have become one of my legislative priorities – and we’re getting things done. The full Senate is on the verge of passing my bill to give nursing-home residents the explicit right to use cameras in their rooms. My comprehensive elder care reform bill has begun the committee process after months of bipartisan work, stakeholder input, and compromise.
It isn’t easy watching your mom die the slowest of slow deaths, but I will choose to remember her by her legacy, not by her disease.
I don’t know why my mom got Alzheimer’s, and I don’t know if her journey is my future. What I do know is that life goes on. Aging does not discriminate; my story could be your story.
One step at a time, though, we can fundamentally change the way we view caring for our aging population in Minnesota. And that’s progress.
This originally appeared in the Duluth News Tribune