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

Caregivers in Crisis: We Need Free Experts to Guide Us

What do family caregivers need most?

"Caregivers in Crisis"According to a recent survey by AARP New York, New York State Caregiving & Respite Coalition and the Council of Senior Centers and Services of New York City, Inc, the number one support that family caregivers want is a free “consultant” who can:

• get to know their family well;
• make recommendations;
• explain the support services offered in their area, and
• guide them through difficult transitions and decisions.

To me, this sounds similar to what geriatric care managers offer, but geriatric care managers cost an average of $50 to $100 an hour, and not everyone can afford them. (Looking back, I wish I had paid for a geriatric care manager for me and my mom, but I didn't want to spend Mom's hard-earned savings on advice. Now that I know how she ended up spending all of her savings to qualify for Medicaid, anyway, I wish we had spent some of her savings on hiring a geriatric care manager. If you want to find a geriatric care manager in your area, visit http://www.caremanager.org/.)

In addition to a free consultant to guide them, caregivers say they need to be able to take advantage of respite services in their area without being placed on a waiting list, and they need more training to handle medical tasks when their loved one is discharged from the hospital.

You can read more about this caregiver survey in my article on caregivers.com.

What Does "Person-Centered" Care Look Like?

If you’re a family caregiver looking for help in the home, or investigating assisted living or nursing home care, “person-centered” care can enrich your loved one’s life—and your own. The trick is knowing what true person-centered care looks like, and how to find it or create it yourself.

When my husband and I invited my mother, Judy, to move in with us and our young children 8 years ago, I knew nothing about person-centered care. I saw my mother not as a person living with dementia—a whole person with some cognitive impairment—but as a diminished version of herself. Like many people, I believed the stereotypes about Alzheimer’s disease and other dementias, and no longer saw my mother as a person with a full range of human needs, emotions, likes and dislikes. I focused on her limitations, not her strengths...

Read more of this post on caregivers.com.

As a former caregiver for my mother, and the author of the book "Inside the Dementia Epidemic: A Daughter's Memoir," I am impressed with these policy recommendations (and I've read the whole paper). What I still find confusing is what services and supports, exactly, have waiting lists and need more funding. If a caregiver approaches their local office for the aging (on their own or through NY Connects), what kind of respite is usually available, what kind of transportation, etc.? Does it vary from county to county, or are there state-wide standards? I went to a dementia caregiver support group at my office for the aging for 8 years, and was told that respite, for example, was a mish mash of volunteer programs, all with waiting lists. I believe that what caregivers need is publicly-funded respite and transportation, not unpaid volunteers. I believe that this policy paper should have recommended a certain number of respite hours a week per family as a minimum standard. (One hour a week, for example, does little.) Also, I agree that caregivers need "community care navigators" to help them understand services and supports that are available, and to make decisions that are best for them and the person they are caring for, but I wonder if existing staff at offices for the aging can provide that level of guidance for all of the people who need it. What we need is a whole lot more "navigators" who have training similar to geriatric care managers but who don't charge $50-$100 an hour. Every time I had to make a decision for my mother, or help her transition from one facility to another or from the hospital to rehab, I wished I had such a "navigators"--that I could afford. Is it realistic to hope for an army of publicly-funded community care navigators large enough to meet the demand? Or is it simply a matter of educating family caregivers about the existence of NY Connects and offices for the aging? I wonder. - See more at: http://states.aarp.org/caregiver-crisis-in-ny-looming-demographic-shift-could-spell-disaster-for-states-elderly-advocates-call-for-change/?intcmp=DSO-LOGIN#sthash.eYLPtBNW.dpuf

As a former caregiver for my mother, and the author of the book "Inside the Dementia Epidemic: A Daughter's Memoir," I am impressed with these policy recommendations (and I've read the whole paper). What I still find confusing is what services and supports, exactly, have waiting lists and need more funding. If a caregiver approaches their local office for the aging (on their own or through NY Connects), what kind of respite is usually available, what kind of transportation, etc.? Does it vary from county to county, or are there state-wide standards? I went to a dementia caregiver support group at my office for the aging for 8 years, and was told that respite, for example, was a mish mash of volunteer programs, all with waiting lists. I believe that what caregivers need is publicly-funded respite and transportation, not unpaid volunteers. I believe that this policy paper should have recommended a certain number of respite hours a week per family as a minimum standard. (One hour a week, for example, does little.) Also, I agree that caregivers need "community care navigators" to help them understand services and supports that are available, and to make decisions that are best for them and the person they are caring for, but I wonder if existing staff at offices for the aging can provide that level of guidance for all of the people who need it. What we need is a whole lot more "navigators" who have training similar to geriatric care managers but who don't charge $50-$100 an hour. Every time I had to make a decision for my mother, or help her transition from one facility to another or from the hospital to rehab, I wished I had such a "navigators"--that I could afford. Is it realistic to hope for an army of publicly-funded community care navigators large enough to meet the demand? Or is it simply a matter of educating family caregivers about the existence of NY Connects and offices for the aging? I wonder. - See more at: http://states.aarp.org/caregiver-crisis-in-ny-looming-demographic-shift-could-spell-disaster-for-states-elderly-advocates-call-for-change/?intcmp=DSO-LOGIN#sthash.eYLPtBNW.dpuf

Frequently-Asked Questions about Dementia

When I speak to caregiver support groups and conferences about dementia and Alzheimer's disease, I find that these 5 questions are very common:

1. What is the difference between dementia and Alzheimer’s disease?
2. Is there a test to diagnose Alzheimer’s disease?
3. If there is no cure for Alzheimer's disease, is early diagnosis a good idea?
4. Is Alzheimer’s hereditary? and
5. Is there any way I can reduce my risk of developing dementia?

For National Alzheimer's Disease Awareness Month, I've written a blog post for caregivers.com that attempts to answer these questions. I believe that the more we educate ourselves about dementia, the less we will fear or avoid people with dementia, and the less we will fear developing dementia ourselves, even though the statistics are staggering.

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Celebrating the Life of a Person with Alzheimer's Disease

My mother, Judy, told me years ago that when she passed away she wanted me to cremate her and to hold a “life celebration,” not a funeral—a party with family and friends. She pictured us at her lakeside home, reminiscing and laughing. We would spread her ashes on the waves, then talk and eat.

As Mom's dementia progressed, I decided that what was most important was not a party for her after she was gone, but the quality of her life from day to day. And yet, I still wanted her to have a special gatheriing.

In 2010, when Mom had to move into a nursing home, I planned a small party for her 78^th birthday. On the invitations, I wrote, “Though she’s living with advanced dementia, Mom will delight in your presence. Years ago she wanted a celebration of her life after she passed, but we’re sharing our love and affection for her now while she can enjoy it.”

In a post for caregivers.com, I write about this wonderful day, and how Mom seemed to enjoy being the center of attention even though she could no longer walk, speak, or feed herself. Even with advanced dementia, Mom seemed to drink in the love of family and friends who hadn't visited in years. And they, in turn, seemed profoundly moved by her enduring spirit.

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