I was my mother’s caregiver for nine years, my twin grandchildren’s guardian/caregiver for seven years, and am my disabled husband’s caregiver now. I’ve had this role for two years and there are more years to come. As time passed, I became aware of the losses associated with caregiving. These are ambiguous losses—painful losse
Throughout her writing, caregiving expert Harriet Hodgson details her journey caring for her mother with memory disease. In her book “Alzheimer’s: Finding the Words,” excerpted here, she shares about needing to run interference for her mother, even when her mother lived in assisted living.
At least two out of three people with Alzheimer’s and related disorders live at home, according to Abnormal Psychology in a Changing World. Eventually these patients need continuous care. While the caregiver is preparing food, doing the laundry, or even in the bathroom, patients may walk out the door. And most can’t find their way back.
Residents of assisted-living facilities also get lost. Mom called me several times from the mall, asking me to come and get her. “The bus left without me and I can’t find my way out of this damned place,” she said. Getting lost is embarrassing for the patient and stressful for the caregiver.
When Mom fell and broke her shoulder, she couldn’t remember where she lived. The doctor asked me to buy an identification bracelet for her as a precaution.
“Why do I need an identification bracelet?” Mom asked. “I know my own name.”
“If you fall and hit your head, Mom, you could be knocked out,” I said. “Then you wouldn’t be able to speak.”
The bracelet became a source of strife between us. Some days Mom wore it, some days she didn’t. And she kept losing it. Ostuni and Santo Pietro, the authors of Getting Through, advise getting a Medic-Alert© bracelet inscribed with the words “memory disorder.” This is an excellent suggestion, but one my mother would have opposed.
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Later in the book I write about the emergency necklace I bought for my mother. The assisted living community recommended the necklace, and I thought it was a good idea. It wasn’t. Mom thought the necklace was room service. She would press the button, go to the phone and dial 911, and give her food order to the person who answered. Dialing 911 became such a problem that I had to cancel the emergency service. When I look back at this time, I’m amazed that Mom could dial 911 and my phone number.
“I keep calling and you’re never home,” she declared angrily. But I was usually home and answered many successive calls. Answering didn’t help. My mother had developed agnosia—the inability to identify sensory stimuli—and couldn’t recognize my voice. This discovery was one of the saddest caregiving days. I didn’t know the time would come when she no longer recognized me.
Running interference means to protect others or to help people without directly helping them. Sometimes, when a loved one has Alzheimer’s, family members spend most of their time running interference. For Harriet’s mother, running interference meant having patience—patience for trying new methods, patience for her accusations, patience for her inability to remember her own daughter.
Rochester resident Harriet Hodgson has been a freelance writer for 37 years, is the author of thousands of Internet/print articles, and 35 books. She is a member of the Association of Health Care Journalists and the Minnesota Coalition for Death Education and Support.
She is also a contributing writer for The Caregiver Space website, Open to Hope Foundation website, and The Grief Toolbox website. Harriet has appeared on more than 185 radio talk shows, including CBS Radio, and dozens of television stations, including CNN.
A popular speaker, Harriet has given presentations at public health, Alzheimer’s, caregiving, and bereavement conferences. Her work is cited in Who’s Who of American Women, World Who’s Who of Women, Contemporary Authors, and other directories.
All of Harriet’s work comes from her life. She is now in her 19th year of caregiving and cares for her disabled husband, John. For more information about this busy author, grandmother, wife, and caregiver please visit www.harriethodgson.com.
Throughout her writing, caregiving expert Harriet Hodgson details her journey caring for her mother with memory disease. In her book “Alzheimer’s: Finding the Words,” excerpted here, she shares about needing to run interference for her mother, even when her mother lived in assisted living. At least two out of three pe
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