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When loved one becomes ‘someone I never knew’

Kim Martin and Chuck Carson described their experiences as caregiver and patient living with Alzheimer’s or related dementias on Aug. 13 in The Durango Herald. Every one of the 6 million Americans living with this disease, as well as the 11 million uncompensated caregivers, has a unique story to tell. However, some commonalities occur – like those moments when either caregiver or patient no longer recognizes the loved one with whom they may have spent a lifetime.

I found I hardly knew that guy at our dinner table dressed in a T-shirt and swaddled in a double layer of adult diapers. Could this be the same person who took me to the only five-star restaurant in St. Louis on our first date more than 40 years before? My husband had captivated me at first meeting. Now the once wise attorney, doting dad and caring partner was someone I never knew before.

Personality and behavioral changes can be part of the brain deterioration in people living with Alzheimer’s or related dementias. Despair mounts when the caregiver finds a different person inside a familiar body. As the intensity increases and weaves through the myriad of other new chores of looking after a loved one, the weight of obligations becomes even more crushing.

“How many times can he ask me when we’re going home after we’d arrived at our daughter’s house for the weekend,” asks my friend Dana. “Now I’ve got to watch carefully to make sure he doesn’t slip out the front door.”

My neighbor Marny confides: “My studio has always been my quiet refuge, and Larry knew to leave me in peace. Now he hovers at the door like an osprey stalled over still lake water, waiting for a fish to rise. It’s disruptive and disconcerting.”

Such repetitive interruptions can summon intense patience and sap precious emotional energy. The collective toll of coping with these changes compounds the exhaustion for caregivers.

Large numbers like 6 million people may seem monolithic. But drill down to the local level and calculate what’s happening in La Plata County. The Alzheimer’s Association estimates that one in nine people age 65 and older is living with Alzheimer’s or related dementias. Based on 2020 census data showing that approximately 21% of our local population is in that age bracket, the likelihood is that an estimated 1,200 individuals are affected by this devastating disease. The number of caregivers is nearly double the prevalence of patients – nearly 2,500 individuals – using the Alzheimer’s Association’s ratios. This critical need calls for intervention and support from within our community.

The only way I could cope with my husband’s demise was to get a lot of exercise, bring in a respite care worker occasionally so I could get away, meditate for a little while, make sure I ate and slept well, and talked with friends. Other caregivers may find similar outlets. The Senior Center offers regular support group meetings. Local efforts also are underway through the Durango Dementia Coalition, which seeks to identify Alzheimer’s and dementia patients with the intention of offering some level of support.

Arnold Lobel’s immortal children’s story recounts the tale of “Frog and Toad Together.” Toad dreams of grandeur on stage while his friend, Frog, shrinks in the audience. In desperation, Toad shrieks: “Frog, Frog, where have you gone? Come back Frog. I will be lonely.” Fortunately, they wake up and “spend a fine long day together.” In the real world of dementia, bad dreams seldom have happy endings for caregivers and their loved ones.

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