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Former Wisconsin Governor Marty Schreiber was a caregiver to his wife Elaine, who was diagnosed with Alzheimer's disease.
Courtesy Marty Schreiber
When my wife, Elaine, was diagnosed with Alzheimer’s at age 63, we set out on a long journey. Unknowingly, I began evolving from husband to caregiver. It was some 25 years ago that Elaine began to show signs of early onset. In more ways than one, I lost my wife to this terrible disease — first, when her memory began slipping, then when she lost many physical abilities and finally with her passing in April 2022.
With years of caregiving under my belt — years filled with missteps and regrets, small wins and rude awakenings — I wanted to share my experiences, my failings and what I have learned so other caregivers can avoid some of my mistakes. While I was still actively caregiving, I wrote a book, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver. I wanted to let other Alzheimer’s caregivers know that they are not alone in their journey.
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I also encourage them to adopt this goal: for them and their loved ones to live their best lives possible. “Possible” is the keyword. It’s not your best life with a genie, magic wand or time machine, but the best life possible in the moment with the hand you’ve been dealt.
.jpg?anchor=377,31&q=80&color=ffffffff&u=k2e9ec&w=375 "What I Wish I Had Done Differently as an Alzheimer's Caregiver")
Blending practical advice with personal stories, Marty wrote the book, 'My Two Elaines,' to help others learn, cope and survive during their caregiving years.
Courtesy Marty Schreiber
Throughout my book, I reflect on what I wish I’d known or done differently: barriers to that “best life possible.” While the anecdotes come in many shapes and sizes, the common ground is this: I wish I’d realized sooner that to join Elaine’s world would be the best thing for both of us.
Here’s what I mean. When Elaine was still living at home, we would take daily walks, on her doctor’s recommendation. We often set out for walks on the paved bicycle path behind our condo in Milwaukee — Elaine with no timeline or agenda and no pressure to achieve or be somewhere. But me? My goal was to walk from point A to point B in 30 minutes, get the walk done and go on with my day, as I was still working full-time. Checking my watch, mentally moving on to the next task on my to-do list — that was my world’s misguided focus.
In Elaine’s world? These walks were filled with moments of joy. She marveled at the tall trees, pretty flowers, a butterfly and leaves rustling in the breeze. Simple pleasures I missed out on by staying in my own world — one centered on future achievement rather than a present sense of peace. As a caregiver to a loved one with Alzheimer’s, it’s up to you to choose to enjoy the journey rather than focus on the end result. I could have made better decisions to enjoy the present. Please take my advice: Don’t wait until it’s too late.
At other times, my misstep was on wheels. I mentioned there is a bike path behind my condo, and bicycling had been a favorite hobby of mine and Elaine’s for years. They say you never forget how to ride a bike, but I learned the hard way that individuals with Alzheimer’s can be an exception to the rule. Elaine got to a point where she could no longer ride a two-wheeled bike. So I bought her a three-wheeled adult tricycle, designed for people with difficulty balancing. Elaine could sit on the bike, but because her Alzheimer’s was so advanced, she couldn’t relate to the handlebars or figure out how to steer straight. She got frustrated, and rightly so. “This is stupid,” she said.
The point is, as Alzheimer’s progresses, you can try familiar activities, but you need to accept when your loved one’s brain can no longer process certain information. That was Elaine’s reality. Trying to get her to ride any bike was a product of my living in the past. No matter how much I wanted to keep Elaine in my reality, one where we could still ride bikes together and share the hobby we both loved, I had to give it up and join her world — for her safety, for her peace of mind and simply for her own capabilities.
Beyond Elaine’s capabilities, I wish I’d had more patience for her good intentions. In Elaine’s world, she thought she was helping when she unpacked all the luggage and returned it to the hotel dresser drawers moments before the taxi arrived to take us to the airport. Delayed by Elaine’s best efforts, we made it to the jetway just as they were closing the door. I ended up with a short fuse and said some regrettable things to a well-meaning flight attendant. Not my proudest moment.
Married in 1961, Marty and Elaine met in high school Latin class and raised four children in Milwaukee.
Courtesy Marty Schreiber
Another time, when we were vacationing in Florida, I brought $1,000 in cash to cover expenses. Foolishly, I put the money in a jar on the dresser, only to discover the next day it was gone. For all I knew, Elaine had flushed it down the toilet. I was frantic and furious. Four days later, the cash turned up, having been stuffed into a sock drawer. Elaine must have tried to hide it safely away in an attempt to show me she could still help. Little did she know that her “helpful” gesture meant four days of cortisol coursing through my body.
Whether it’s walks or bikes or travel snafus, all of these moments, filled with my own irrational irritability, disappointment and exasperation, could have been helped by better joining Elaine’s world: seeing her perspective, where present pleasures are the ultimate joy. Accepting that old hobbies and habits no longer are an option. Understanding that Elaine’s intentions were always to help, never to harm.
My advice to fellow Alzheimer’s caregivers is to let go of the old way of living and join your loved one’s world. Once there, you’ll discover a different kind of contentment together.
My advice to other family caregivers
- Meet them where they are. The greatest act of love and acceptance as a caregiver is to meet your loved one where they are, not where you wish they still could be. Letting go of old routines and expectations opens the door to connection, peace and acceptance.
- Focus on the present, not the past. Alzheimer’s changes the pace and purpose of daily life. By slowing down and embracing your loved one’s sense of wonder in the moment, you can find joy in shared experiences rather than frustration over lost goals.
- See good intentions behind behaviors. What may seem irrational or aggravating often comes from a loved one’s desire to help or contribute. Recognizing their intentions with patience and empathy can ease tension and strengthen your bond.
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