To be a successful dementia caregiver we must live in the Both/And. The Both/And of both seeing the person who was, and seeing who the person is now. We cannot make them live fully in the present and we cannot make them become who they were before dementia, and so it becomes a Both/And. To live in the Both/And is not always easy, it requires us to think and live outside of a set box and into the fluid landscape. We need to live in the Both/And when it comes to determining care, and in our everyday interactions. We may both work to honor their wishes, and do what will provide them with the highest quality of life with the care they need. We cannot always predict the path the diagnosis will take, so what was determined before the disease advanced may no longer be safe for you or the person with dementia. We must both do what is safe, and find ways to honor the person we are caring for at the time. We need to both make sure they are properly cared for, and respect their vision for their life, always finding ways to make pieces of that life a reality. We must find ways to spend time with them that both are a part of who they were, and work for who they are now.
The short film, Fragile Storm comes to mind when thinking of the Both/And. I heard of this film several weeks ago, but only got around to watching it recently. If you have not seen it yet, please pause here to view the film. Warning: It is a little dark, and we need to remember it is still a film and that Both/And is only one layer. Viewing of this film will not hinder your ability to read on and understand.
Fragile Storm is about one caregiver who is trying his best to keep his wife’s wishes for how they will live as her disease progresses. While he is following her wishes, it is no longer safe for her to live in their home; it is no longer healthy. She is picturing herself young, yet fully in the present. She is living in the Both/And time. He is working hard through pain of both the physical and emotional, trying to keep her in their house as she wished, but their qulity of life and their saftey is gone. He is not in the Both/And of dementia caregiving. When I decided to sit and watch this 9-minute film, because of the podcast, Alzheimer’s Speaks, I knew roughly what the film would be about but was glued to my computer screen as it played. Upon the rolling of the credits, I started asking questions, thinking about my experiences as a secondary and non-medical caregiver and thinking about the caregiver’s need to live in the Both/And. Have I lived in the Both/And while in the role of caregiver? Have others around me? How would this particular situation improve if Norman was living in the Both/And, seeing and honoring who she was and her wishes, and admitting, seeing, where she is now.
Fragile Storm is only one example of the caregiver’s Both/And. It can also be present in our daily interactions regardless of a person’s stage in dementia, place of residence, or level of care. So often we want to see the person for who they were, the person before dementia, and that is good, that is needed, but it is not the full picture. Their needs have changed, their personality may have even changed, and they see the world through a very different lens. This view means that to help them reach the highest quality of life, and to remain relational with them we need to see them for who they are right now, at this very moment. We can both remember who they were, using that as a foundation, and we can see who they are today and meet them at the corner of Both/And.
P.S. I will dive deeper into Fragile Storm and my thoughts at a later date. It is a layered piece that stirs up many reactions and thoughts. If you watched the film, I would like to hear what you think of it.