It started in a coffee shop, after Anne Hill’s mother had passed away, 10 years after being diagnosed with dementia.
Her mother’s last five years were considered end-stage Alzheimer’s disease – an unusually long time for a person to linger in the twilight before dying. It was a lonely and sometimes terribly difficult journey for Hill, who was her mother’s primary family caregiver.
After her mother was gone, Hill sat down for coffee and conversation with Marian Hodges, M.D., the Providence geriatrician who had cared for her mother.
Hill was pleased with the care her mother had gotten. But she felt something was missing.
The point was driven home when Hill herself was diagnosed with breast cancer. She was given four notebooks of material about what to expect on her journey of treatment and recovery from breast cancer. But when it came to her mother’s Alzheimer’s, she got nothing.
“She told me, ‘You were great with my mother. You took care of her for 10 years, and in that span you never really gave me any real idea of what to expect on the journey,’” Dr. Hodges said of her conversation over coffee with Hill.
“And I stammered some and made apologies,” said Dr. Hodges. “I had never had anything great to give Anne. I had been looking for something to give to my families, because they all wanted to know more.”
A book project is born
The women agreed that families dealing with dementia need a resource – something along the lines of the bestselling pregnancy guide “What to Expect When You’re Expecting.” So Hill issued the challenge.
“Let’s write this together,” she said.
Hill and Dr. Hodges set out to write a clear-eyed, approachable text that families could turn to during the long, challenging journey through a loved one’s dementia.
“Every family caregiver is going to have bad days, and we tell them that,” said Hill.
The slender book doesn’t promise that everything is going to be OK. It acknowledges that every caregiver of a family member with dementia gets frustrated or feels discouraged at times.
It’s wrenchingly painful when a parent no longer acts like the parent you knew. She may call you names, throw a glass of water at you or accuse you of trying to take advantage of her. It’s a terribly hurtful episode for you, but as the Help is Here books explain, it’s not uncommon. It’s not personal. And those moments pass.
“My mother would scream at me ‘I hate you, I hate you and I hope you die of Alzheimer’s disease,” Hill said. Oftentimes, she said, caregivers hold these hurtful episodes inside, believing them to be unique and even true.
Caregivers must understand, Hill said, the hurt isn’t aimed at them, but is a symptom of the disease of dementia.
“It happens to all of us,” she said.
“Help is Here” is sprinkled with realistic examples that will be familiar to those who have been in that situation:
“Halfway to the doctor’s office, Mrs. Anderson asked Lucy where they were going and Lucy said ‘To the doctor.’ Mrs. Anderson said ‘I don’t want to go to the doctor!’ and tried to unlock the car door to get out. Lucy, keeping her finger on the ‘lock’ button of the electric door lock, said, ‘I’m surprised, because the last time we saw your doctor you said that she reminded you of your college roommate, Louise.’ Mrs. Anderson replied ‘Really?’ Lucy said ‘Yes, I remember when I was a girl that you told me how you and Louise had so much fun living together in the dorm and about the time you climbed out the window after curfew and got caught! You two got into so much mischief together!’ Mrs. Anderson, distracted by the stories of when she was in college, forgot she didn’t want to go to the doctor.”
Such stories are drawn from Hill’s journey with her own mother, and from other patients of Dr. Hodges. The first section – Day to Day Living – “is about how you live day to day with someone you no longer recognize as your parent, or husband or wife,” Dr. Hodges said.
Families, providers welcome the book
The initial distribution of books was to Providence primary care clinics throughout Oregon. It was an immediate hit.
“This book was one of the first positive moments in their practice with this disease,” said Dr. Hodges. “And families were so grateful because they had been waiting for something like this.”
The book has since been distributed to Providence primary care clinics throughout the five-state system, leading to a wave of re-orders. Other systems, including the U.S. Department of Veterans Affairs, PeaceHealth and the Legacy Health System, have also ordered copies to give to their patients.
The Providence Foundation has supported the Help is Here series of books since the beginning of the project and owns the copyrights to all the books. Profits, if any, from the sales of the books are returned to the Help is Here fund to support Dr. Hodges’ and Hill’s educational programs for caregivers of those with dementia. The co-authors make no money from the sale of the books.
Help is Here
There are three Help is Here books:
- “Help is Here: When someone you love has dementia,” aimed at family caregivers
- “Help is Here: When a Resident has Dementia,” intended for people who work in senior residences where residents frequently have dementia
- “Help is Here: When a Resident has Dementia Leader Manual,” which helps a leader in a senior residence teach “Help is Here: When a Resident has Dementia” to residence staff in six, short meetings
You can learn more about the books on the Help is Here page of the Providence website, which includes videos of the two authors discussing the book.
Information on how to order the book, priced at $16.95 for a single copy, and at discounted prices for bulk purchases, can be found here.