I have cared for people with dementia, but as a nurse, not a relative or spouse. I saw the heartache and frustration of those who loved someone with dementia, but I cannot address it personally. I know that we need to be clinical, not emotional, or overcome by the heartache and frustration in any caregiving situation. David Troxel, the cofounder of the Best Friends approach and coauthor of The Best Friends Approach to Dementia Care and A Dignified Life, tells how being a best friend to your loved one can make things better for all.
Troxel explains that keeping a well-rounded view of the individual is essential. Remembering their preferences and engaging with them in those preferences promotes the relationship. I remember working with a woman who was depressed and never spoke. I found out she had been a school secretary and would engage her in picking out her outfit for the day as though she would work that day. In time, she started talking again, and instead of a wheelchair, she walked to the dining room with help. Another time a woman would sit and stare during activity time. I learned she had been an artist before her stroke. I put a paintbrush in her hand with some paper and watercolors. She began to participate in other ways.
One woman, in a moment of clarity, told us dementia is very scary. Sometimes it feels like they are in a foreign country where nothing seems familiar, and people are barking orders at them in a different language. Understanding how they think helps us imagine how we would feel to become the friend they need. The feeling they have of being alone in their world can be frightening and confusing. The job of a caregiver is to come alongside and creatively walk with them through their experience.
Help your care receiver retain their dignity and feel valued. Everyone needs love and responds to love. People with dementia are just like the rest of us. Even if the care receiver doesn’t remember who you are, they can usually connect to feelings and respond to things like smiling or holding their hands. Once the lady I mentioned above found out she could walk, she started walking a lot. She was still unsteady on her feet, and I didn’t want her to walk alone. I helped her to the couch she was headed toward and knelt to be at her eye level. I took her hand and told her that she needed to tell me when she wanted to move because she may fall if she didn’t have help walking. I assured her that I cared very much about her safety and didn’t want her to fall. She looked me in the eyes and told me she loved me. Remembering the qualities we value in our friends helps us become better friends with our care receivers.
Whenever you can, give them back a little piece of themselves. Something so simple as fixing a cup of tea just how they like it can give them peace or help them with a hobby or make them laugh. Once, while caring for a woman with Alzheimer’s, I felt frustrated because she repeatedly asked me the same thing over and over. I laughed a cheerful, warm chuckle instead of voicing my frustration. She asked me why I was always laughing. I told her I was laughing because life is so grand. She responded, “Then we should sing!” She chose the songs, and we had a good time!
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