Firsthand experience as an Alzheimer's caregiver

Editor's Note: Lisa Mitzen, wife of Fingerpaint founder, Ed Mitzen, shares her experience with Alzheimer's.

Information about Alzheimer’s disease is readily available, but nothing can prepare you for losing someone you love a day at a time. My Dad was diagnosed with this awful disease a few years ago. I have two sisters that live out of state, and although they are not around to witness the day-to-day, they visit as often as possible and are incredibly supportive. As the only “local child,” my Mom and I spend countless hours together trying to navigate through the chaos that is Alzheimer’s. 

After the diagnosis, my Dad did pretty well until he was hospitalized with the flu in February 2018. He was hallucinating, up all night, talking crazy — he had no idea what was going on or where he was. We were scared and had so many questions (How can we bring him home like this? Is this our new normal?). We learned that someone afflicted with Alzheimer’s disease would completely lose their mind when their body is fighting any type of infection and that he should recover to where he was prior to the hospitalization, but it could take a few months. The “flu episode,” as we refer to it now, taught us that we don’t know what we don’t know. 

My Mom is amazing. I am in awe of the grace and compassion that she shows in the care of my Dad. They have been married for 54 years, and luckily they were able to retire at a fairly young age to enjoy some well-deserved time together after raising three daughters. At the age of 74, being the primary caretaker for my Dad is certainly not what my Mom signed up for, and yet she devotes her life to care for the man she loves and describes as her best friend even though he’s slipping away from her so quickly.

Over the past few years, I’ve taken on what feels like more of a parental role. I worry about them constantly — and although I assist them with lots of paperwork, plan their trips, accompany them when they travel, interview caretakers, etc. — most of the time, I feel a sense of helplessness wishing there was more that I could do. 

The Alzheimer’s Association is instrumental in helping to guide us through these uncharted waters, from information to support groups to the caretaker’s class that my Mom and I took in the fall of 2019. In the first class, I was embarrassed that I burst into an all-out ugly cry, but I realized very quickly that everyone in that room had experienced the same thing at one time or another. In addition to learning some helpful tips, we also learned that no two Alzheimer’s patients are alike and that we are facing a long and uncertain journey.

My Dad has declined quite a bit in the past few years. He used to wander around the house looking at family pictures, but he no longer recognizes anyone in the photos. And then COVID-19 hit! Isolation is perhaps the worst thing for anyone struggling with Alzheimer’s disease. As if the pandemic wasn’t bad enough, a life-threatening condition reared its ugly head in mid-July and required him to undergo emergency surgery. We knew the risks of general anesthesia but had no choice. I was not allowed to be at the hospital due to COVID, and the vision of my Mom sitting alone and scared in the surgical waiting room in the middle of the night was truly unbearable. We stayed on the phone together during the surgery. We talked, we laughed, we cried — we basically held each other virtually. My Dad came through the surgery fine physically; however, mentally, he did not fare well.

After he came home, his confusion didn’t subside. He now has difficulty finding the bathroom, he needs assistance with bathing, dressing, and pretty much everything else. My Mom’s days are very long caring for my Dad, and I try to see them several times a week. He recognizes that I am someone familiar, but unless my Mom reminds him of my name and that I am his daughter, he has no idea. There are times where he no longer recognizes her. 

We have some companion caretakers that come in during the week so that my Mom can run errands, go to appointments, and see her friends. It’s so incredibly sad to see their beautiful love story derailed by this cruel disease. My Mom and I have never been closer, and I try to keep a pulse on how she’s holding up. I’ve already lost my Dad. I don’t want to lose her, too. So, when asked, “How’s your Dad doing?” my response is always, “My Dad is in the best care ever; it’s my Mom that I worry about.”