Compassion and dignity

I spent weeks searching online for the best butterscotch cream pie recipe I could find. My great-grandmother was joining us for Thanksgiving dinner and I wanted to make the pie in her honor. Granny had spent much of the past year in a skilled nursing facility because of a fall that had left her with a fractured hip and had left my grandmother—her daughter and caregiver—at a breaking point. Her dementia was progressing rapidly and at the time of the hip fracture my grandmother was increasingly unable to cope with the demands of being a family caregiver, particularly given her own health issues.

A good deal of my passion for caregiving came from spending many summers in Granny’s care. Caregiving was her area of expertise and food was a way in which she carried out that task. Pies, especially butterscotch, featured among the many dishes that she provided generations of my family for decades. So, if she was coming dinner, I wanted her to have butterscotch cream pie. It had been several weeks since I had spent time with Granny and I was looking forward to seeing her and having her enjoy the pie I had made just for her.

The woman who was pushed into the dining room in a wheelchair that Thursday in November was not the Granny I knew or the one I had spent time with just several weeks before. And, owing to the progression of her disease, I was a complete stranger to her, so much so that she recoiled from my touch. During dinner, I sat across the dining room table and watched her as she sat in silence, looking lost, bewildered, and angry to be thrust into a large gathering of people she didn’t know or recognize. And the pie? The pie went uneaten. What I had planned—my expectations—didn’t materialize and was replaced by a greater sense of loss. Our matriarch was disappearing right in front of us.

More than a decade later, this experience of witnessing my great-grandmother living with dementia and the ways in which my family dealt with this process drives my research program. I spend my days searching for strategies and tools for symptom management and caregiver support in dementia, as well as exploring the impact providing care for a loved one with dementia can have on families and individuals. While my family’s journey with this disease was unique in that it was ours, it is part of the larger context of family caregiving and the overarching themes are similar. This complicated process is heightened during holidays, and issues around food and eating take center stage during Thanksgiving.

In my work, family caregivers have shared stories of their own experiences navigating the ever-changing landscape of their loved one’s disease process. Though my colleagues and I continue to explore these complex issues and search for solutions in our research, no magic bullet has been discovered. However, one basic idea stands out for me and may be helpful. As with so many arenas in life, approaching your loved one with dementia with compassion and dignity is key. While this can be difficult during a disease process that seems to rob a family incrementally of someone they hold dear, we as human beings need compassion and dignity in our lives.

When we approach someone with compassion and dignity, we give ourselves permission to make mistakes and realize that one size does not fit all. Assumptions about what your loved one with dementia can or cannot do, or will or will not want, most likely will lead to frustration and disappointment—for you and for them. I baked a pie anticipating that Granny would enjoy it. Those were my expectations, not hers. Perhaps had we taken the time as a family to discuss how we might incorporate her into the Thanksgiving holiday as more than merely a dinner guest, the results might have been different. At the very least, we would have been approaching the situation with a bit more compassion and offering her a lot more dignity. Caregivers in my research speak of the modifications and changes they realize they must make, through trial and error, to offer their loved ones the best.

While it may sound simplistic and trite, dignity and compassion are the key components of dementia care in my opinion. Though these concepts alone cannot solve all of the issues related to caring for a loved one dementia, I can think of no better place to start. Sometimes the best answers to complicated questions are the most simple—as simple as pie.