Caregiver Shares Hard-Earned Knowledge

Tracy Cram Perkins never set out to write a book about caregiving for someone with dementia. But when her father expressed his wish that she share what they were living through right then, there was really no choice.

“Before I really lost my father to the fog of dementia, he made me promise him that I would find a way to help other people do what I’m doing...that’s what put me on this track.”

Out of her father’s generous wish came Dementia Home Care: How to Prepare Before, During, and After.

Tracy envisions caregivers who need help with a specific situation - and need it right now - grabbing up her book, skimming through the table of contents, and going straight to the pages with realistic suggestions and ideas for that kind of situation. It’s immediate help from someone who has been there with four loved ones. She has been a caregiver for both her parents, an uncle, and an aunt, all with different types of dementia and other health issues.

What to Do with a Master Escape Artist?

Tracy’s father had always been skilled at figuring things out. That didn’t change after the family placed him into his first group home. They were soon informed that he needed a place with more security.

Fast forward through homes two, three, and four, each with higher security than the last. When the fifth home let them know he had ingeniously found his way out through a window and they would have to find yet another place for him, Tracy and her husband found a way to bring him to their home to live. That meant the higher level of security was now up to them.

Caregivers: Take a Daily Photo 

Tracy learned from the Alzheimer’s Association to take a daily photo of your loved one each morning. That way, if they take off and become lost, you’ll know what they are wearing that day and can describe it or give the photo to police and others who are helping to find them.

She then expanded that technique to solve another challenge - getting her dad to bathe and change clothes, which he regularly resisted. She had him help her “wrap a present” for someone each night. Unbeknownst to him, a fresh set of his own clothes was in the box. The next morning, while he was having breakfast, she would put the wrapped present in his room. She told him it was from a loved one, and he was excited every day to open it. He wanted to put on his new present and would even agree to bathe. Once he was dressed Tracy took the daily photo of him, telling him they would send it to whichever loved one had sent the package that day. His dementia kept him from remembering the process from day to day. Genius, and fun for Dad!

Tracy shares plenty of tricks and hacks she learned for keeping her escape artist dad safe at home. Disguising exits to “disappear” visually by using one color of paint or murals, making doors look like windows, or posting signs discouraging entry can work well in keeping loved ones from leaving their safe home. Changing how doors work by moving working doorknobs to the very top or bottom of the door or putting locks or alarms on doors and windows are other ideas. 

Even something as simple as a black doormat in front of a door can prevent someone with dementia from trying to leave through that door. Dementia causes color perception to alter, and black just looks like a hole in the ground that they don’t want to step into.

Tracy stresses that not every trick will work for every person. Each family will figure out what works for their loved one through trial and error.

More Dementia Caregiving Help from Tracy

Something that really shines through about Tracy is her cheerful attitude and sense of humor. She does not shy away from how tough it is to be a dementia caregiver. But she found that laughter is a wonderful tool that eases tense feelings in those with dementia and helps their caregivers lessen their own stress and anxiety. The loving moments and the bonding experiences that flow from laughing together may fade quickly from the loved one’s consciousness, but they leave sweet memories for their caregivers.

While she may be an expert in dementia caregiving today, Tracy had to go through her own searching, learning, digging and experimenting to find what really worked for her loved ones with dementia. Some resources she found most helpful are:

• The End of Alzheimer’s by Dale E. Bredesen, MD
• The 36-Hour Day by Nancy L. Mace, MA and Peter V. Rabins, MD, MPH
• Caregiver’s Guide to Dementia by Gail Weatherill, RN, CAEd
• Creating Moments of Joy Along the Alzheimer’s Journey by Jolene Brackey 
• Share the Care by Cappy Capossela
• Teepa Snow, Positive Approach to Care

Tracy shares much more of her own hard-learned and hard-earned help in her book and on her website https://tracycramperkins.com/.

You can reach Tracy at tracy@tracycramperkins.com

Article By Carol Hillegas