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Five Things I Wish I knew When My Wife was Diagnosed with Alzheimer’s

30 November 2022

Assisted Living Memory Care Athens GA  
Five Things I Wish I knew When My Wife was Diagnosed with Alzheimer’s - Athens, GA

Welcome back to our blog page for our Athens-area assisted living and our Athens memory care community. This blog is adapted from Martin J. Schreiber’s "My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver". Full credit is offered here to Mr. Schreiber as the author and owner of the content that you are about to read.

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.

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.

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.