Book Review: "I Care: A Handbook for Care Partners of People with Dementia"

Have you heard of the term “care partner”? A new book describes why dementia caregivers often find it more fulfilling to think of themselves not as care “givers” but as care “partners.”

If you care for a person with Alzheimer’s disease or another dementia, I highly recommend a short but comprehensive new guide called “I Care:  A Handbook for Care Partners of People with Dementia” (Balboa Press, 2014) by dementia care experts Jennifer Brush and Kerry Mills.

According to the authors, a care partner is someone who receives as well as gives care and affection. While care “giving” can seem one-sided (and never-ending), a care “partnership” is reciprocal and rewarding.

Are “Care Partnerships” Really Possible?

Mom and me in her nursing home

When I first started caring for my mother, Judy, 10 years ago, I felt that all I was doing was giving—my time, energy, and patience—around the clock. I would have resisted the idea that my mother, who seemed much diminished with early-stage dementia, had anything to give back to me. For a while, I even thought of her as my third child (which I soon learned was not a great idea). I assumed that my job as caregiver meant doing things for Mom: running errands, taking her to the doctor and emergency room, making sure she had enough to eat and clean clothes to wear, paying her bills. But as a caregiver is quoted as saying in “I Care,” “to become a care partner, one first has to be present. This is far different from just being there.”

Read the rest of this post on caregivers.com.

Book Review: The ABCs of Caregiving

“Some caregivers believe that they must devote every waking moment to their loved one: it’s their responsibility, duty and commitment. Only by giving until it hurts can this all-consuming obligation be fulfilled.”
              --Nanette J. Davis, Ph.D., author, "The ABCs of Caregiving:
                Words to Inspire You"

Does that quote sound like you as a caregiver? It definitely reminds me of myself in my early days as a caregiver to my mother, Judy. When she moved in with me and my young family, I thought I could be all things to all people, if I just tried hard enough.

If you feel over-extended as a caregiver, I recommend an antidote:  a little book called “The ABCs of Caregiving: Words to Inspire You.” It’s a short, sweet read, a book you might keep on your bedside table and return to again and again.

Nanette J. Davis, Ph.D., the author of two other books on caregiving, was the primary caregiver for her husband as he slowly declined with a long-term condition. She knows what it’s like to be on the front lines of caregiving, and to grieve for someone you love while they are still alive. She understands the daily stresses of caregiving, how they can leave you feeling exhausted, frustrated, and angry at times. She gets it. She’s been there.

But in her book, “The ABCs of Caregiving: Words to Inspire You,” Davis focuses on how you can feel empowered and uplifted as a caregiver, not defeated. Davis draws not only on her own experience as a caregiver, but on her interviews with 60 family caregivers.

Nanette J. David, Ph.D., author of "The ABCs of Caregiving: Words to Inspire You"The book is divided into brief sections on “words to inspire you” for each letter of the alphabet—for example, “acceptance,” “compassion” and “perfectionism.” Each section is a sort of meditation, an affirmation of both the importance of your role as caregiver and the need to focus on your own well-being.

Read the rest of my review on caregivers.com.

A New Book I Highly Recommend: "The Caregivers"

A brand-new book, "The Caregivers: A Support Group's Stories of Slow Loss, Courage, and Love," by journalist Nell Lake (Scribner, Feb. 2014), is one of the best books I have read about what life is really like for family caregivers. For those of us who are already caring for a family member or friend, the book provides reassurance that our experiences and feelings are normal. For those who have not yet been “called,” it’s a book of great depth and spirit that will light the way ahead.

Lake observes the members of a caregiver support group at her local hospital, following their stories as they unfold over two years. She is interested in writing a book about caregiving partly because her maternal grandmother, who was diagnosed with cancer in her late 70s, committed suicide rather than “lose control” of her life and be dependent on others. Lake’s own mother is still vital and independent, but Lake wants to learn more about caregiving so she can find ways to navigate her relationship with her mother if her mother needs care. Lake is also aware that, with more people living longer, providing quality, affordable long-term care and support for family caregivers is one of our greatest public health issues.

Nell Lake, author of "The Caregivers"Led by a social worker, the support group reflects the surrounding community:  white and mostly middle-class. (Lake acknowledges the inherent limitations of that fact.) As Lake observes the group, she becomes like a caregiver herself, visiting the group members in their homes and their loved one’s facilities, and sharing in some caregiving tasks. She comes to know the families like a friend, and the resulting stories are deeply moving, as engrossing as a well-wrought novel.

Read the rest of the review on caregivers.com.

Another Book Review! : "Love in the Land of Dementia"

If you have dementia, or are caring for a family member or friend with dementia, there's a new memoir that I'm really excited about--a short, sweet read that will leave you feeling hopeful and inspired.

I believe that “Love in the Land of Dementia” by Deborah Shouse is truly one of the best memoirs out there by an adult child caring for a parent with dementia. Not only is Shouse a talented writer, but she shows us in simple but beautifully-wrought scenes how she came to discover small ways each day to enjoy her mother’s company despite her mother’s advancing dementia.

While her perspective is uplifting, Shouse doesn’t shy away from describing the more difficult moments of dementia caregiving, such as the guilt, despair, anger, and grief we often experience, and the challenges we face dealing with the elder care system.  She includes scenes in her mother’s assisted living facility and nursing home dementia ward, and with her mother’s hospice team, that many family caregivers, and elder care professionals, will find illuminating. 

Her book is an easy read, full of insight, honesty, compassion, and humor. But what makes it unusual in “caregiver lit” is that it helps us see people with advanced dementia not as “dementia patients” or as “shadows of their former selves,” but as persons with a full range of emotions and needs and the ability to share love. 

Shouse writes, “I would never have guessed that I could sit on the edge of a hospital bed with a noncommunicative woman and still feel the warmth of connection…She is not ‘herself’; she is not the mother I have known and the wife Dad loved. But despite all the loses, she is still someone well worth being around….When all the ordinary things are gone, the spirit can still remain.”

Shouse's writing has appeared in The Washington Post, The Christian Science Monitor, Reader's Digest, Newsweek, Woman's Day, Hemispheres, Family Circle, Spirituality & Health, Chicago Tribune, and MS. She writes a weekly column on love stories for the Kansas City Star, and coauthored Working Woman's Communications Survival Guide, which is now in its fifth printing, and Antiquing for Dummies. She has written several memoirs and business books and has been featured in more than a dozen Chicken Soup books.

Learn more about Deborah Shouse and her book "Love in the Land of Dementia" here.

Book Review: "Leaving Tinkertown"

I just finished a memoir that I highly recommend for anyone who has a loved one living with Alzheimer's disease or another dementia. Beautifully written, and devastating in its detail, “Leaving Tinkertown,” by Tanya Ward Goodman, is both a first-rate father-daughter love story and a testament to the particular heartbreak that is early-onset Alzheimer’s disease.

Although Tanya describes her father as disappearing before her eyes--and I usually don't recommend books that depict people with dementia as "gone" and no longer themselves--I think that this memoir reflects a truth of early-onset Alzheimer's disease:  that it can be much more devastating in its brutality and swiftness than, perhaps, late-onset Alzheimer's.

Tanya's father, Ross, is an eccentric but gentle and nurturing man who made his living in the West as a painter for carnivals. Over the years Ross built a 22-room museum of miniature wooden scenes and figurines—Tinkertown—by adding rooms one by one to their farmhouse in New Mexico, building the walls from glass bottles and cement. Tanya grows up sharing her home with visitors from across the country. When her father is diagnosed at age 58 with Alzheimer’s disease, Tanya is barely scraping by in her late 20s in Los Angeles, but doesn’t hesitate to come home, leaving her sweetheart behind, to help out her father, who grows increasingly testy and stubborn, and her high-octane but emotionally-removed step-mother.

The author of "Leaving Tinkertown," Tanya Ward Goodman, with her father, Ross

In “Leaving Tinkertown” Tanya artfully weaves scenes from her childhood with those from the present, showing us how she continues to adore her father but struggles with the fears we so often have as caregivers—that she’ll forget who she is and what she wants for herself, or be overcome by sadness. She is angry that with his dementia her father “is leaving,” and angry that she is “being left.”  Over time, Tanya learns not only how to find her place as an adult in this strange and unpredictable household, overcoming attacks of anxiety and self doubt, but how to find her strength as a daughter and caregiver.

As a reader, I came to feel a great fondness for both her and her father, so it was difficult to witness his rapid descent into early-onset Alzheimer’s. As the daughter of a woman who suffered from dementia for over 10 years, but declined more slowly than Ross and passed away at 80, not in middle-age, I felt immense sorrow for Tanya that she lost her father so young. Fortunately, her story is beautifully wrought; with exquisite detail, honesty and humor, Tanya guides us gently from moment to moment, in much the same way she learns to guide her father through the movements of his day. I highly recommend this book for any reader, not just those who have a loved one with dementia. Ross, Tanya, and the special place that is Tinkertown will stay with you long after you finish the last page.

Watch the book trailer