Martin J. Schreiber
The summer solstice marks the longest day of the year — a day when we get to enjoy the most sunlight. This idea of “the longest day” is also a symbol of hope adopted by those suffering with Alzheimer’s disease, patients and caregivers alike.When my wife, Elaine, was diagnosed with Alzheimer’s 20 years ago, there was no means of delay, prevention or cure. So, Elaine and I set out on a painful journey, with myself as her caregiver. In more ways than one, I lost my wife to this terrible disease — first her memory, then her passing in the spring of 2022.I was the caregiver. Now I am the survivor. If you’re wearing the mantle of “caregiver” today, allow me to share with you what I learned over my 20-year experience with Alzheimer’s. I’ve endured the despairing feeling that there’s nothing to be done. I know you also must feel thisbecause20 years later, this disease still cannot be delayed, prevented or cured.
Summer solstice associated with fight against Alzheimer's disease
When it comes to Alzheimer’s, I’ve learned that you can’t measure success based on beating this disease, because beating it isn’t an option. Like my dad taught me: when bad things happen, we can throw a fit — or we can work to understand what is. In understanding what is, we can focus our energy on making a bad situation as good as possible.So, as caregivers, how do we make this bad situation better? There is something realizable we can do — something actionable that gives hope and meaning to the daily struggle of Alzheimer's. While you can’t abolish this disease, you can choose every day to help yourself and your loved one live your best lives possible.
How do you help your loved one with Alzheimer’s live their best life? You join their world. Once I gotpastcorrecting Elaine — trying to keep her inmyworld — worry and anxiety greatly lessened for both of us. Her life became better, and so did mine. Together, we were able to experience moments of joy within Elaine’s world: sharing the beauty of a flower, the singing of a bird, the blowing of leaves across the lawn.
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In time, I also learned that it wasn’t necessary for Elaine to know my name in order for our hearts to touch. I remember once we were having lunch, and Elaine started to cry. When I asked why she was crying, she said it was because she was starting to love me more than her husband.
I didn’t ask her what was wrong with her turkey husband. Instead, I chose gratitude for that moment of connection with Elaine, husband or not. Elaine showed me you can bond with your loved one simply by holding hands, singing songs, and listening to music. These small moments held immense meaning in Elaine’s world — and for her contentment, her world was the only one that mattered.
Of course there is a catch: We can’t neglect our own world. In order to best help our loved one live their best life, we need to focus on livingourbest life. That starts with taking care of ourselves. In caring for Elaine, I learned I was her lifeline. By denying myself basic care, I was gnawing at that lifeline, making it almost useless. As caregivers, that gnawing happens when we don’t ask for help, when we stop exercising, when we don’t eat a balanced diet, when we give up on being social, and when we lose more and more sleep.
Caregivers need to attend to their own needs and health
When a loved one is afflicted with such a terrible disease, it’s easy for caregivers to overlook their own needs and health. Being a caregiver requires endless amounts of energy, empathy, and patience. It’s imperative to care for yourself so you have the strength of body, mind, and spirit to also care for your loved one. If you feel you need permission to prioritize yourself, consider this your green light.
Asking for help isn’t giving up — it’s an act of courage. Eating, sleeping, and exercising properly isn’t indulgent — it’s healthy. Socializing with friends and family isn’t selfish — it’s necessary to curb the isolation of caregiving and remind us that there is life outside of this disease.
Taking care of yourself, joining the world of the person with Alzheimer’s, focusing on moments of joy and gratitude— these are things we as caregivers have to choose to do and seek every day. After 20 years, I can tell you: it’s not easy. But nothing worthwhile ever is. My wish is to encourage caregivers to see this “longest day” as a chance to begin again. Use this day of brightness to understand that there are things you can do to offer hope, to ease the pain, and to feel a little lighter.
Martin J. Schreiber is a former Wisconsin governor and author ofMy Two Elaines, which details his triumphs and challenges as caregiver for his wife, Elaine, who lived with Alzheimer’s for nearly 20 years. Schreiber uses humor and compassion in his message of hope in presentations throughout Wisconsin and the U.S. since launching his awareness campaign in 2016.
