advocacy

Book by Stroke Victim Provides Useful Insights for Dementia Caregivers

Dorian Martin Health Guide February 17, 2010
  • As her Alzheimer’s progressed, Mom would become extremely unhappy when people began to treat her like she was a child or an imbecile. For instance, an allergy doctor talked directly to me about Mom’s condition and just ignored Mom (who was sitting in the room) during a consultation. I could feel Mom’s anger start to bubble like red hot lava ready to exit a volcano. Sure enough, once we left the room she firmly stated her dislike for how she was made to feel invisible during that conversation. She also said that since he was her doctor, he should address his comments to her.


    Mom’s reaction kept running through my mind while reading Dr. Jill Bolte Taylor’s book, “My Stroke of Insight: A Brain Scientist’s Personal Journey.” Although this book focuses on Taylor’s recovery after suffering a stroke, her descriptions made me realize that as caregivers, we don’t necessarily understand what it’s like to be in the shoes of a loved one with dementia. And it’s often easy to treat the person with dementia (or the person who suffers a stroke) as a non-entity.


    Taylor’s story does a great job of illustrating the mysteries of the brain. You get a sense of how the brain functions as Taylor describes in great detail what it was like to have a stroke. And then she shares what it was like to try to regain function. Admittedly, dementia patients will not be able to do this, but the lesson to be learned here is what impact the caregiver and medical professionals can have. For instance, Taylor describes how a medical intern came into her room to examine her. The intern’s “energy” was very intense and proved to be draining, causing Taylor to become exhausted. I remember watching Mom be “drained” after interacting with certain people; her reactions were often delayed until the next day, but you could tell that her brain was exhausted from this effort.


    Taylor also described how she relearned things, thanks to having the learning process broken down into small steps. Again, this is a good lesson for caregivers who are working with people who have dementia. Simplifying tasks so that the loved one with dementia can more easily understand what is necessary is so useful, but often something we don’t think about doing. I realized how much Mom needed to have situations simplified when I took a huge box of crayons to the nursing home so Mom and I could color some designs. She had great difficulty selecting a color from the huge array; it was obvious that wide range of choices drained her. After that, I started finding ways to break down our activities in ways that she would easily understand and that wouldn’t tire her out.


    I also would encourage caregivers to turn to the back of Taylor’s book, where “40 Things I Need the Most” lists what people should do to help in the stroke sufferer’s recovery. Many of the items in this list are equally useful in working with someone with dementia.


  • All in all, I think that Taylor’s experience provides an interesting lesson both in living and caregiving. Although dementia differs greatly from a stroke where the person can recover, Taylor’s insights will make you stop and appreciate the wondrous brain.