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I met my First Elaine in 1953, when we were both freshmen at what is now called Milwaukee Lutheran High School in southeastern Wisconsin. She helped me achieve each one of my successes, including becoming governor of Wisconsin, and stood by me in every one of my losses and illnesses. Elaine was as intelligent, kind, gracious, loving, understanding, self-sacrificing and forgiving as any wife, mother, or grandmother could ever be. If it weren’t for her, there wouldn’t be me.
It was about 2005, when she was in her mid-sixties, that Elaine began to slip away from me. Her daily skills declined, and her interest in long-held hobbies withered. Gradually, my constant helpmate became dependent on me for everything and was diagnosed with Alzheimer’s disease. Eventually she forgot her family, including me.
Even with Alzheimer’s, Elaine remained as kind, gracious, loving, and self-sacrificing as any person could be. But she was not the same person. My First Elaine gave way to my Second Elaine.
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Being an Alzheimer’s caregiver is about striving to help you and your loved one live your best lives possible, despite the circumstances. That means asking for help, letting go of the person you once loved to love the person they are today and remembering to take care of yourself, too.
Cover of "My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver" by Martin J. Schreiber and Cathy Breitenbucher.
If you are a caregiver, here are five things that I learned the hard way and share in my book "My Two Elaines: Learning, Coping and Surviving as an Alzheimer’s Caregiver" to help other caregivers know they are not alone.
1. You are a hero, but you won’t be perfect.
As a caregiver, you will do heroic work. You may be thinking, Me? A hero? I say, "Yes! A hero!" Even though your efforts won’t be enough to stop the disease from stealing your loved one, the deeds you will perform as you continue to care for and love your partner are heroic.
You can’t expect yourself to be perfect. Looking back at the past 18 years, I should have forgiven myself for not being perfect. I was doing the best I could in a difficult situation and so are you.
2. Chronic stress experienced by Alzheimer’s caregivers may shorten caregivers’ lives by as much as four to eight years.
No matter how much you love your partner, you can’t take good care of him or her if you don’t first take good care of yourself. I didn’t realize how important that was until it was almost too late. I don’t want that to happen to you.
I should have started earlier to find an adult day care so that I could reclaim part of the day for myself, including time for exercise.
3. Your family and friends may not understand what you need.
When your partner has Alzheimer’s, you can feel like that lone wolf, isolated from anyone who cares about your well-being. People don’t usually think of offering rides or meals or help with the yard work to an Alzheimer’s caregiver. They still love you, but they simply don’t know how to respond.
Feeling so lonesome was something I didn’t anticipate. Like other negative aspects of caregiving, it silently creeps in on you. Caregivers, here is your warning: loneliness is coming your way. You can’t just put on a brave face day after day. You need to reach out to others and teach them about Alzheimer’s. To survive, you can’t worry that you’re being a burden.
4. I wish I would not have let my ego get in the way of what was best for Elaine.
The toughest question a caregiver faces is moving their loved-one to a facility. Moving to a facility was never going to cure Elaine. I knew that. But I also recognized that Marty’s One-Man Nursing Home was no longer good enough either. That realization made it somewhat easier for me to accept the inevitable: Elaine should move.
You can’t expect yourself to be perfect. Looking back at the past 18 years, I should have forgiven myself for not being perfect. I was doing the best I could in a difficult situation and so are you.
Home, I’ve learned, isn’t a building. It’s a place inside you where you feel secure.
Even as I adjusted to the emptiness in my home and in my heart, there were two emotions dominating my thinking: relief that Elaine would be safe and hope that now I could focus on being a better father and grandfather.
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5. By wishing for the past, I had deprived my wife of happiness in the moment.
Even though it broke my heart, I should have let go of my First Elaine sooner so I could love my Second Elaine where she is now.
I had lived such an active life with my First Elaine. With my Second Elaine, that was no more. Unfortunately, it took me too long a time to realize that I must choose to let go, to accept that hard truth.
Author Martin J. Schreiber
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I needed to meet my Elaine where she was and enter her world, something I call therapeutic fibbing. One time she asked about her parents and I told her they were dead. After seeing the look of pain on her face, I vowed never to cause that pain again. Whenever she would ask about her parents, I would say they were great and they loved her.
That’s my way of slaying the dragon of Alzheimer’s: choosing to see my wife as the person she was then. Helping her enjoy the person she was at that moment. Helping her sense that I was happy to be with her. You can slay the dragon as well, but you can’t do it alone.
Adapted from "My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver," by Martin J. Schreiber and Cathy Breitenbucher. Copyright © 2022 by Martin J Schreiber. Used by permission of Harper Horizon.