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Advice for dementia caregivers: ‘Enjoy your own life’

Mary Nowotny

Thanks to The Durango Herald for its excellent, informative and helpful news story on Wednesday, detailing the dynamics of Alzheimer’s disease and related dementias. The numbers are staggering – an estimated 6.7 million people in this country are living with this disease. But, please, add to this number all of those millions who are providing uncompensated care to these people. You or someone you know may be one of those caregivers, and the toll on their personal lives and health can be overwhelming.

I speak from experience. My husband of nearly 40 years died of the disease five years after his diagnosis. When he turned the wrong way up a one-way street in our old neighborhood, my daughters and I began to suspect something was amiss. From that first misstep, I cared for him in our home until five days before his death, when he had to be placed in a facility because he couldn’t – or wouldn’t – get out of bed.

In the early stages, sometimes his behavior was just annoying – sure, we could look for his lost wallet for two days only to find it under his desk chair. For many months, it was disturbing – incontinence that required laundering linens every day. Other days, it was downright scary – leaving the stewpot on the stove until the metal started to melt.

Because I had grown accustomed to the impact of his disease, I took on the challenge with my second life partner. Foolishly, I thought, I got this. An accomplished pilot, he failed to deploy the landing gear in his new plane and successfully executed a belly landing at Durango Regional Airport.

After his diagnosis, I looked after him for two years until I had to abandon my role as a loving partner and turn over his care to his devoted children living nearby. For these young people, leading busy lives, the experience was annoying, disturbing and downright scary. It also meant missed business meetings or late kid pickups at school because they were searching frantically for a wandering parent.

Whether you’re starting the decline into this dreadful disease or living with someone who is showing early signs, heed the warnings and take very good care of yourselves. Make the necessary precautionary moves but give yourself a lot of latitude to enjoy your own life and that of your family. Call on friends to help with some occasional backup or hire a professional person to provide respite care in the home. The goal is to go on loving this person as much as you did in the early days of your relationship. But it’s also to emerge as a whole person – albeit with some scars – who can still function fully, not only as a caregiver, but also as a self-preserved person in our community.

My real solace in the aftermath of these two life-altering experiences is that I recognized traits in myself that I never knew existed. Patience, forbearance and fortitude don’t necessarily come from one’s gene pool. They can be cultivated and strengthened like any muscles. And for those caregivers who may believe their chores and challenges will never end, I can only offer hope, based on my experiences – there can be new life and love after the distress.

The Durango Dementia Coalition has compiled a valuable list of local resources for those whose lives have been impacted by a dementia diagnosis. And the Alzheimer’s Association has a wealth of pertinent materials on its website.

Mary Nowotny is a freelance writer in the Southwest who has learned a lot about the soft sides of old age, sickness and dying.