Susan Kiser Scarff and Ann Kiser Zultner
Dementia is a general term used to describe the symptoms of a large group of brain disorders including: Alzheimer’s, Frontotemporal Dementia (FTD), Vascular dementia, Lewy Body disease, Parkinson’s disease, and Creutzfeldt-Jakob disease, to name a few.
A dementia patient’s behavior can range from bizarre and/or aggressive to sweet and gentle with most patients becoming socially uninhibited at some point in the progression of the disease. Their problematic behavior is defined by what part of their brain has atrophied. Even with a diagnosis you cannot predict what is looming on the horizon. There is no cure, only limited treatment for some of their symptoms and unmanageable behavior.
Most of us noticed changes in our loved ones twenty years before they were diagnosed, but nobody listened. We are their husbands and wives, sons and daughters, mothers and fathers, brothers and sisters, in-laws and friends. We live in big cities and small rural towns; have diverse racial, cultural, and social backgrounds. Yet, we have a lot in common. We are caregivers and we are fifteen million strong in the United States alone. We work for free and our mission is a labor of love.
The following short stories you are about to read are true; only the names have been withheld to protect identities. Dementia caregivers from all over the world wrote them. This is only one day in their lives or conceivably only sixty seconds, and they communicate the unpredictable world of dementia and caregiving.
– MOM HAS SHAVED HER FACE!!!! My husband was the one that noticed this. I’m so embarrassed for her; I don’t know what to do. She now has a full beard. I kept finding the magnifying mirror and tweezers close to where she was sitting and figured that she was plucking her eyebrows (which are completely gone) O-M-G! I have to take her out in public for appointments this week.
– I lost my glasses one day and was running around fixin’ to rip the house apart. When my husband came home, I asked him to help me look for the glasses and he said, “Mom’s wearing them!” I knew she had been sitting there staring at me the whole time and I never even looked at her face!
– So, there was a fake potted plant in bed with my mother-in-law this morning. The plant was about three feet tall and my mother-in-law is only 4’10”. The plant was properly covered up in the bed, next to her baby doll.
– The whole family was visiting my mother, who liked to take endless walks back and forth from the living room to her bedroom. This time, my husband happened to be standing nearby when my mother stepped into the hallway, quite unaware of the commotion she caused, dressed in a pair of slacks…and nothing else. I think my husband had two scotches that night.
– My parents were returning from a road trip. My mom soiled herself and instead of cleaning herself up, she threw away her clothes (pants and underwear) and walked out of the gas station with just a shirt on.
– The last couple of years of my husband’s life he had four or five wives…at least HE thought he did. (I believe it gave him a sense of security and the love and affection that he craved.) One of his favorite wives was the teenage son of our number one caregiver. The young man would put my husband in his transporter chair every day, attach his bike horn to the chair, and wheel him around the block at lightning speed with my husband honking the horn every 10 seconds. My husband, who used to fly F-100 Super Sabres in the Air Force, thought that was the best. What a ride!
This article presents the lighter side of dementia. Now for the simple truth — As dementia caregivers, we pray for a cure! Until that time, we will make every effort to initiate open and honest discussions about dementia and the serious toll it takes on caregivers and their loved ones. Please hug a caregiver today.
Susan Kiser Scarff and Ann Kiser Zultner are authors of “Dementia: The Journey Ahead.” The views expressed are personal.