Gig Harbor author shares experience and advice in ‘Dementia Home Care’ book
Life was seemingly going along just fine for Tracy Cram Perkins. She was working, married, living her life in Gig Harbor. Then her mother got sick.
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Not long after, Perkins received a panicked phone call from her younger sister, saying their father could no longer care for their mother. Her mother had cancer, but was also exhibiting symptoms of dementia.
With a diagnosis of moderate Alzheimer’s disease, her father moved into a care facility. Her mother settled into an adult family home.
Dementia Home Care
Perkins fought to bring her father home to care for him. She went on to care for her uncle and her aunt, and spent 16 years as a caregiver to family members.
Her father’s Alzheimer’s care spurred her to write “Dementia Home Care: How to Prepare Before, During, and After,” published by Behler Publications. The book won first place for Instruction and Insight Non-Fiction in the 2022 Chanticleer International Book Awards. It also is ranked fifth on a list of the 18 Best Nursing Home Care ebooks from BookAuthority.org.
Perkins shares information on the second and fourth Fridays and Saturdays of each month at the Gig Harbor Ace Hardware on Point Fosdick Drive. Her Hardware for Soft Care program is designed to make the home more dementia-friendly by using items from the hardware store.
Perkins is also co-host of the show Dementia Home Care, Balance Care with Peace of Mind. It airs live on the third Thursday of each month at 7 a.m. on USA Global TV and on YouTube.
‘Sucked into the system’
Perkins cared for her father at home for a little more than three years with the support of her husband, Daniel, and a lot of help from family. After he died, she began to think of how he felt when he was first diagnosed and ended up in a care facility.
“He was sucked into the system,” she said. “He was in five facilities, and two geriatric psych wards, he was taped to a bed, and drugged, and he kept asking me why this was happening to him.”
Her father’s experience in care facilities was traumatic.
“When he first came to live with us he told us he had Alzheimer’s Disease, and not the plague. He asked, ‘What does it take to be treated like a human being?’”
That’s when Perkins thought of writing a book, but she didn’t know enough to write it at that point. Her father died in 2013. In 2014, she began pitching her book idea at the Pacific Northwest Writers Association Conference.
“I didn’t have it clearly organized, and it took three years to figure out how to present it,” she said. “It was ‘weird’ by industry standards, and most books (on this subject) are either medical, or memoirs.”
A how-to manual
After more than seven years and 100 pitches to editors, she landed a deal and the book was published.
What she needed while caring for her family members was a how-to manual. She tried more than 30 books on the subject and none met her needs.
“I read them like a recipe book,” she said. “If I like the recipe in this book, and another one in the next one, and I experimented with what worked.”
Perkins wanted to write a book that would make it easier for readers to find the right information for the moment they are facing.
“I put in an eight-page table of contents, so they can find the challenge of the day, and turn to that page,” Perkins said. “It was a very eye-opening time for me. I was the ‘I can do it all’ person.”
Be patient, don’t argue
But Perkins realized she really couldn’t do it all. Her father’s needs eventually advanced beyond what she could provide. His medication list was long, his health was failing, and she realized he needed skilled nursing care.
Her time spent caring for her father gave her a lot of insight into Alzheimer’s Disease, she said. The top two pieces of advice she gives anyone caring for a person with dementia is never to rush them, and that you can’t win an argument with them.
“Someone with moderate Alzheimer’s Disease has holes in the brain,” she said. “It is shrinking, and the body fills the holes with fluid to protect it, but they lose the information that was stored there. The brain has to jump the holes to pull information to fill in the blank, and what they come up with has nothing to do with the argument, or conversation.”
For instance, if a dementia patient talks about someone who died, telling them that person is deceased will only cause them grief. They will become upset with you and pull away from you, Perkins said.
“I discovered a speech pathologist who came up with a way to communicate, and suggested cards and a memory book for them,” she said.
She filled a three-ring binder with “pictures of him as a child up to his current age, and things that were important to him. I had him tell me stories about them, and that way I could see where he was in the timeline based on his answers. So, he was telling me he had to go home, and I told him to pick himself out of the photos, and he chose the one of himself at age 16. So I said his mom didn’t want him to walk home in the dark, and she would come pick him up in the morning. He just relaxed, and was OK.”
Another piece of advice, Perkins said, is to have support.
“The hardest thing is to ask for help, because we either think that we aren’t worthy of it, or that we can do it all, and it’s the worst lie you can tell yourself,” she said.
“Dementia Home Care: How to Prepare Before, During, and After” is available at the Ace Hardware on Point Fosdick Drive, BBQ2U, local independent booksellers, and online at Amazon, Target, and Walmart.
Perkins shares her secrets for making the home more dementia friendly, called Hardware for Soft Care, from noon to 3 p.m. on the second and fourth Friday and Saturday of each month at Ace Hardware, 4816 Point Fosdick Drive in Gig Harbor. Her list of “10 Steps to Calming Aggressive Dementia Behavior” is available by signing up for her mailing list at tracycramperkins.com.