An Alzheimer’s caregiver story about what to let go of and what to cling to when caring for a loved one who is slipping away.
by Jenny M.
My mother in law, Odessa, worked as a high-school sewing teacher for much of her career. She took pride in making all her own clothes, including tailored wool suits, fitted pants, and nightgowns. One of the pieces she was most proud of was a lined, rust-colored raincoat which she often wore when we took her to lunch every few weeks in San Francisco.
In 2008, at the age of 76, Odessa was diagnosed with Alzheimer’s disease. It started with obvious short-term memory loss. Conversations included a lot of repetition, she asked the same questions over and over no matter how many times we answered. But she was still very mobile and seemed to enjoy our company and hearing stories about our two kids, so we continued our regular outings. Over time, we began to notice some odd behavior. When my husband and I arrived at her home, she always was wearing her raincoat. And when we left her with the young couple who lived with her, she didn’t want to take it off. They told us she often wore her coat all day in the house.
My husband and I would try to persuade her to wear a heavier coat and long pants when the weather was colder, but she clung to the rust-colored coat and couldn’t be convinced that she might be more comfortable without it. We sometimes joked that she probably had cash sewn in the lining; her attachment to it was so fierce. One night when she was getting ready for bed, my husband gave the coat a good once-over just to be sure. There were no treasures sewn into it, but perhaps there was something even more valuable to her—a feeling of comfort and security.
In later stages as Odessa’s memory faded, she would not recognize her grandchildren or remember that she’d been retired for twenty years. But she always remembered that she was a teacher. She sometimes talked about having to get to work. She’d taught at a private girls’ high school and had a close friendship with the principal, Ms. B.. For a long time, Odessa was routinely convinced that Ms. B. was expecting her at school for an important meeting and that the students were awaiting her arrival.
My husband and I made the common mistake of trying to correct her, thinking it would relieve her mind to know she didn’t have to go to work. “Remember, mom? You’re retired now,” my husband would say, “You don’t have to be anywhere.” We’d see a troubled look overtake her soft face and realize that we were upsetting her instead of being soothing. The more loving response might have been to just listen, and ask questions about her class, her favorite students, and what she loved about teaching.
True to the core, Odessa was still teaching—and we were continually learning.
It was painful watching her cognitive decline and scary for us to imagine her not being able to recognize us at all or know that we were her family. But as time went on, we learned that she was happiest remembering herself as a young, independent woman. She had loved teaching and creating custom garments for herself and others. Her coat of rust was symbolic of who she was at her best, most true self. As long as it was laundered regularly, what did we care if she wore it all day, every day, inside and out?
There was no point in us insisting when and where the coat was appropriate to wear, trying to force her into our reality. Our mindset was no longer relevant to her—and never would be again. Tapping into her reality, so that we could help her feel loved, comfortable, and protected, was all that really mattered. When we finally understood this, it took pressure off of everyone and allowed us to focus on Odessa’s real need—keeping her safe so she could live out her life in her own home.
And it gave us more time to focus our unsolicited fashion advice on our two growing kids.
If you have questions about how to care for a loved one with Alzheimer’s or dementia whose behavior is unusual or confusing, we suggest 5 Tips for Alzheimer’s Caregivers.
Need care for a loved one right now? If you’re an Alzheimer’s caregiver, we can help. Honor Care Pros have the skills and experience to provide personalized care for people with Alzheimer’s or other dementia—and to support family caregivers. Questions? Give us a call any time at (877) 777-5116.