Inside the Dementia Epidemic: A Daughters Memoir


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Martha Stettinius on Inside the Dementia Epidemic

Amazon will not stop taping your Alexa queries. Q: What lessons have you learned from your time caring for your mother that will stay with you through your own old age? At 48 I am in complete denial. But I can tell you that, after caring for my mother, Judy, for 8 years, I do know one thing for certain. I have lived in an intentional community in Upstate New York for 15 years with my husband and two children.

Aging in community can mean living in an intentional community such as in cohousing , or within a network of neighbors who volunteer to help each other, such as the Beacon Hill Village in Boston. It means finding or creating the places and relationships that can sustain us as we age and if we need long-term care. I believe that if we age in community we are more likely to remain healthier longer.

Book Review: "Inside the Dementia Epidemic" | National Council on Family Relations

I also believe that if my mother had not lived alone in an isolated cottage on a lake until she was 72 then in my home and various dementia care facilities until her death at age 80 in late —if she had lived in community—her quality of life would have been radically different. I also learned from my time with Mom that caregiving is not a one-person job.

If at some point my husband or I need help with long-term care at home shopping, cooking, bathing, dressing, etc.


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Other people may prefer online chat groups for caregivers such as those on the Caregiver Action Network. There I found people who understood how I was feeling, and who shared many tips to help guide me through my caregiving journey. What kind of preparations would you make?

And does the prospect frighten you? We found ways to communicate without words, and our visits helped heal what had been a challenging relationship. But truthfully I am as frightened as the next person by the prospect of dementia. I use a CPAP machine at night to treat my sleep apnea, another lesser-known risk factor. Mom did not have that advantage.

Because of the stigma of dementia, friends and neighbors often fall away after a diagnosis. I would meet with a geriatric care manager to talk about my options for care, and with a financial advisor about Medicaid planning. Q: When did you decide to write a book about your experiences as a caregiver, and what motivated you? A: When Mom moved in with us in early , I started writing in stolen moments to deal with the stress of suddenly becoming her caregiver.

Like many caregivers, I felt so much guilt and confusion. The professor encouraged me to turn my essays into a book, but I had no energy for that at the time, and little interest. After Mom moved into assisted living I decided that my story might help others, and that it would be worth sharing. She was hospitalized several times, did a stint in a rehab center for a fractured pelvis, moved to a memory care facility when she became incontinent, and then a nursing home when she needed to be spoon-fed. I read a lot of books about dementia care, and the few memoirs available at that time about dementia caregiving.

But it would take several more years for me to appreciate all the ways in which my mother remained whole and capable. After just 3 months of living with Mom it was clear that we each needed more space and independence. Throughout my visits, her doctor appointments, and our outings for lunch, I continued to judge her behavior as the effect of her life-long personality, not as a sign of a damaged brain. In she fell, possibly during a small stroke, fractured her pelvis, and lost some of her ability to speak clearly.

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She suddenly became incontinent. I visited her daily at the rehab center, and it was there that I began to see dementia differently. I live in an intentional community, and had just attended a community discussion about how we could better support our one neighbor with dementia. The group talked about many things, such as helping people with dementia feel useful and needed, and I felt inspired to try a different approach with my mother.

The next day, I decided to visit Mom after work not out of my usual worry and sense of duty, but simply to sit with her, to slow down and enjoy together whatever pleasures we could find. We held onto each other a long time.


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Inside the Dementia Epidemic: A Daughters Memoir Inside the Dementia Epidemic: A Daughters Memoir
Inside the Dementia Epidemic: A Daughters Memoir Inside the Dementia Epidemic: A Daughters Memoir
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Inside the Dementia Epidemic: A Daughters Memoir Inside the Dementia Epidemic: A Daughters Memoir
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