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Martha Stettinius is the author of the critically-acclaimed book Inside the Dementia Epidemic: A Daughter's Memoir. Martha was a “sandwich generation” care partner for her mother for 8 years. Her mom, Judy, who had vascular dementia and probable Alzheimer's disease, lived with Martha, then in assisted living, a rehab center, a "memory care" facility, and a nursing home. As an advocate for people with dementia and their care partners, Martha speaks at events for family caregivers and elder care professionals; writes A Place for Mom’s blog for caregivers, caregivers.com; consults on dementia caregiving issues for eCareDiary.com; serves as a moderator for the Facebook group USAgainstAlzheimer’s Support Group; and serves as a volunteer representative for the Caregiver Action Network. She earned an M.A. in English Education from Teachers College, Columbia University, lives in Upstate New York with her husband and two teenagers in an intentional community, and works as an editor. For more information about Martha, visit www.insidedementia.com.

46 Responses

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  1. Beth Meyer
    Beth Meyer at | | Reply

    Excellent post…so true

  2. Eileen McShea
    Eileen McShea at | | Reply

    Thank you for posting Martha’s story. Her ability to recognize her mother’s subtle needs is exactly why a caregiver’s resume should be secondary to a caregiver’s heart. At Hanson Services, we provide in-home care for adults. We also provide the training and skills one needs to care for an older adult. But kindness and empathy are as important as physical skills, and have to come from the heart, not a classroom. Our care is moment-to-moment and one-to-one, based on our client’s needs, mood, energy and personality at that particular time. This has been our philosophy from the beginning. We don’t use the term “person-centered.” We just call it “care.”

  3. Helene Wineberg
    Helene Wineberg at | | Reply

    I too entered my caregiving role with my mother as just another task, but every now and then I could just ‘be’ with her and settle into the role. It was always more rewarding when I let it happen.

  4. Roxane Smith
    Roxane Smith at | | Reply

    Thanks for a very helpful & reflective article. I have been very fortunate to have parents who made decisions about their lives & independence. They were able to live in a retirement community that provides independence as well as assisted living as needed. Mom died 2-1/2 years ago & dad has adjusted amazingly well in part because of his active role within the community. I believe it is critical that each of us learn ways to care for parents and family members as they age because in essence we will all reach a time in life where likely some assistance will be needed. Rekindling the ways that families nurtured and cared for each other in past generations is a way to bless on another. Recognizing also that some people will require assistance for all or a great portion of their life, learning to care for them carries the same importance.

    On the other end of the spectrum, my husband and I are actively involved in developing ranch communities for foster children. We continue to learn from the many who are foster care alumni new ways & ideas to care for those who are in limbo in a broken system. Ideas spring from hearts and people who truly care and want to make a difference for all humanity.

  5. Martha Stettinius (@InsideDementia)

    Thank you for sharing this, Marti. Mom seemed to enjoy being read to, too.

  6. Marti Weston
    Marti Weston at | | Reply

    One of the ways we continued to be person-centerd with my husband’s mother, Betty, during her last two years of life, was to read aloud together on many evenings in her tiny assisted living apartment. Though she could not speak much anymore, she had been a voracious reader and a member of countless book clubs, and she still enjoyed stories. We tried to read at least one chapter at a sitting, sometimes more, my husband and I taking turns with the reading.

    We continued to do this up until two days before mother died. While so many other activities were challenging as Mother struggled with post-stroke dementia, she loved the times we were together, following the stories, usually knowing where the book was, and laughing and sighing at all the right places. I’ll bet we read as many as a dozen books, and whether she followed the books as entire novels or as discrete short stories did not matter.

    In her assisted living community, the staff members also knew about her love of reading, and they always made sure that she got to the once-a-week book club, even though she could no longer actively participate.

    Together these two events greatly enriched Mother’s life at time when many things were difficult and she was increasingly frail.

Is this post changing aging? Please comment!