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5 Things I Wish I’d Known When My Wife Was Diagnosed With Alzheimer’s Disease

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I met my first Elaine in 1953 when we were both freshmen at what is now Milwaukee Lutheran High School in southeastern Wisconsin. She helped me achieve each of my successes, including becoming governor of Wisconsin, and supported me through each of my losses and illnesses. Elaine was as intelligent, kind, gracious, loving, understanding, devoted and forgiving as any wife, mother or grandmother could be. If it wasn’t for her, there wouldn’t be me.

It was around 2005, when she was in her 60s, that Elaine started to drift away from me. His day-to-day skills declined and his interest in long-held hobbies faded. Gradually, my constant companion became dependent on me for everything and was diagnosed with Alzheimer’s disease. Eventually, she forgot about her family, including me.

Even with Alzheimer’s disease, Elaine remained as kind, gracious, loving and devoted as anyone could be. But it was not the same person. My first Elaine gave way to my second Elaine.

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Being an Alzheimer’s Caregiver means striving to help you and your loved one live the best life possible, despite the circumstances. It means asking for help, letting go of the person you once loved to love the person they are now, and reminding yourself to take care of yourself too.

Cover of “My Two Elaines: Learning, Coping, and Surviving as Alzheimer’s Caregivers” by Martin J. Schreiber and Cathy Breitenbucher.

If you are a caregiver, here are five things I learned the hard way and shared in my book My Two Elaines: Learning, Coping, and Surviving as an Alzheimer Caregiver to help other caregivers know that 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 if your efforts will not be enough to prevent the disease from robbing your loved one, the deeds you will accomplish while continuing to care for and love your partner are heroic.

You can’t expect to be perfect. Looking back over the past 18 years, I should have forgiven myself for not being perfect. I was doing my best in a difficult situation and so are you.

2. Chronic stress experienced by caregivers of Alzheimer’s disease can shorten caregivers’ lives by four to eight years.

No matter how much you love your partner, you can’t take good care of them if you don’t take good care of yourself first. I didn’t realize how important it was until it was almost too late. I don’t want that to happen to you.

I should have started earlier to find adult daycare so that I could salvage 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 disease, you may feel like that lone wolf, isolated from everyone who cares about your well-being. People don’t usually think of offering walks or meals or help with yard work to an Alzheimer’s caregiver. They still love you, but they just don’t know how to react.

Feeling so alone was something I hadn’t expected. Like other negative aspects of caregiving, it quietly creeps into you. Caregivers, here is your warning: loneliness awaits. You can’t just look good day after day. You need to reach out to others and tell them about Alzheimer’s disease. To survive, you can’t worry about being a burden.

4. I wish I hadn’t let my ego get in the way of what was best for Elaine.

The most difficult question facing a caregiver is the transfer of their loved one to an institution. Moving to an institution was never going to cure Elaine. I knew it. But I also recognized that Marty’s individual retirement home wasn’t good enough either. This realization made it a little easier for me to accept the inevitable: Elaine would have to move.

You can’t expect to be perfect. Looking back over the past 18 years, I should have forgiven myself for not being perfect. I was doing my best in a difficult situation and so are you.

Home, I learned, is not a building. It’s a place inside of you where you feel safe.

Even as I adjusted to the void in my home and in my heart, there were two emotions that dominated my thoughts: relief that Elaine was safe and hope that now I could focus on to be a better father and grandfather.

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5. By wishing for the past, I had deprived my wife of the happiness of 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, this was no longer the case. Unfortunately, it took me too long to realize that I had to choose to let go, to accept this harsh truth.

AuthorMartin J. Schreiber

AuthorMartin J. Schreiber

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I needed to meet my Elaine where she was and step into her world, something I call therapeutic lying. Once she asked about her parents and I told her they were dead. After seeing the expression of pain on his face, I swore never to cause that pain again. Every time she asked about her parents, I said they were great and loved her.

It’s my way of slaying the dragon of Alzheimer’s disease: choosing to see my wife as she was then. Help her appreciate the person she was then. Helping her to feel that I was happy to be with her. You can also kill the dragon, but you cannot do it alone.

Adapted from “My Two Elaines: Learning, Coping, and Surviving as Alzheimer’s Caregivers” by Martin J. Schreiber and Cathy Breitenbucher. Copyright © 2022 by Martin J Schreiber. Used with permission from Harper Horizon.

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