"If there's one thing worse than Alzheimer's, it's ignorance of the disease." -- Marty Schreiber
“Do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.”
I recently realized that it has been 17 years and counting since my wife Elaine’s diagnosis of early-onset Alzheimer’s. Seventeen years! Of those 17, Elaine is going on five years in assisted-living memory care. Throughout my journey, I’ve had to confront what all caregivers live through—the engulfing guilt, depression, unacknowledged grieving, and countless heartbreaking, anxiety-ridden moments. So overwhelming at times.
I did not discover soon enough the wisdom in Max Ehrmann's 1927 poem "Desiderata" that could have helped me better cope:
“Many fears are born of fatigue and loneliness.”
So true! We caregivers have enough on our hands without unknowingly and unintentionally making our fears worse. Dealing with our fear, anxiety, and grief may very well start with addressing our own fatigue and loneliness.
To fight loneliness, we have to reach out, even lean on others—for help, for understanding, for acknowledgement of our journey. We must fight to not be isolated. Along with family and friends—and I strongly recommend counseling—we can also turn to Alzheimer’s support groups and the Alzheimer’s Association's 24/7 helpline at 1-(800)-272-3900.
As for fatigue, how often have we said “things will be better in the morning.” It's not necessarily that the night changes things, but the morning deals with a different person—not so exhausted, not so overstrained. It is in the morning that we are more capable of reinforcing our own inner strength.
Unfortunately, there is no magic pill that expels loneliness and gives inner strength. But I can assure you that by realizing you're not in this alone and taking steps to exercise, eat right, and get enough sleep, you’ll find greater resilience of body and mind. Yes, I know, I know—so easy to say, so difficult to do. But the payback is that by taking care of ourselves we have the best chance of living our best life possible. Most importantly, our loved one also has the best chance of living their best life possible.
To read more on maintaining strength of brain and body in the face of Alzheimer's, I recommend an excellent book "High-Octane Brain" by Dr. Michelle Braun.
Desiderata is Latin for "things desired." Max Ehrmann's 1927 prose poem of that name lists attributes that are desirable in life, including nurturing your spirit and being gentle with yourself. Read Ehrmann's "Desiderata" here. (https://allpoetry.com/Desiderata---Words-for-Life)
For questions or more information about Alzheimer’s and services or programs, visit alz.org or call the Alzheimer’s Association 24/7 Helpline at 800-272-3900.
Marty is the primary caregiver for his wife Elaine, for whom his book is named. He compassionately promotes the value of learning about Alzheimer's and caregiving via personal appearances and serving as a media source. You'll enjoy his honesty and even his humor.