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My First Elaine was a freshmen at Milwaukee Lutheran High School, in southeastern Wisconsin. We met in 1953. She supported me through all my failures, including my election as governor of Wisconsin. Elaine was intelligent, kind and gracious. She was understanding, self-sacrificing, compassionate, loving, caring, understanding and forgiving. If it weren’t for her, there wouldn’t be me.
Elaine started to lose her grip on me in 2005, when she had reached her mid-sixties. As her daily skills declined, so did her passion for long-held hobbies. Gradually, my constant supportmate became dependent upon me for everything. was diagnosed with Alzheimer’s disease.She eventually forgot about her family, which included me.
Even with Alzheimer’s, Elaine remained as kind, gracious, loving, and self-sacrificing as any person could be. She was not the same person. My First Elaine passed 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. It means asking for help and letting go of someone you once loved in order to love them as they are today. 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.
Here are five tips for caregivers: These are the lessons I learned along the way. “My Two Elaines: Learning, Coping and Surviving as an Alzheimer’s Caregiver”To let other caregivers know that they are not the only ones.
1. You are a hero, but you won’t be perfect.
You are a caregiver and you can do great work. You might be asking yourself, “Me?” You may be thinking, “Me? A hero? “A hero!” Even though your efforts won’t be enoughTo stop the disease from taking your beloved one’s life, the heroic deeds that you perform while continuing to care for and love them are extraordinary.
You can’t expect yourself to be perfect. I should have accepted that I wasn’t perfect over the 18 years. You can be proud that you did your best in difficult circumstances.
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 sooner to find adult daycare so that I could take some time off for exercise.
3. You may not have the support of your family or friends.
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 many other negative aspects of caringgiving, it slowly creeps up on you. Caregivers, this is your warning: you are at risk of becoming lonely. 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 that I wouldn’t let my ego get in way of Elaine’s best interests.
It is difficult for caregivers to decide whether or not to move their loved one into a facility. Elaine could not be cured by moving to a facility. This was what I knew. But I also recognized that Marty’s One-Man Nursing Home was no longer good enough either. It was easier to accept that Elaine must move.
You can’t expect yourself to be perfect. Looking back over the last 18 years, it is easy to forgive myself for not being perfect. You are doing your best in difficult situations. I did my best.
Home, I’ve learned, isn’t a building. It’s a place inside you where you feel secure.
While I was adjusting to the empty space in my house and my heart, I had two emotions that dominated my thoughts: relief that Elaine would be safe, and hope that now I could concentrate on being a better father/grandfather.
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5. In my wish for the past, I had deprived my wife of the joy and happiness that she experienced right now.
Although it was hard for me to let go of my First Elaine, I should have done so sooner in order to be able to love my Second Elaine as she is now.
My First Elaine had allowed me to live such an active and fulfilling life. That was not the case with my Second Elaine. It took me too long to see that I had to choose to let go and accept this hard truth.
Author Martin J. Schreiber
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It was essential that I met Elaine at her home and entered her world. This is therapeutic fibbing. She asked me about her parents, and I replied that they had died. After seeing the pain in her eyes, I promised myself that I would never again cause such pain. When she asked about her parents, I replied that they were wonderful and loved her.
That’s my way of slaying the dragon of Alzheimer’s: choosing to see my wife as the person she was then. Making her feel happy with the person she is now. Assisting her to feel that I was happy being 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. Harper Horizon granted permission to use.
