As I mentioned before, when I started the work of caring for my grandpa, I found my way into an identity as a caregiver. Then when I began to work in hospice, I found that lots of the patients and families that I would see were living with grief related to losing parents and spouses to dementia’s slow and relentless erosion of personhood. I started to read books and articles about dementia care, because I am a person who loves to know things that relate to practical work to care for myself and others. In my third year in hospice, I came across Tom Kitwood’s work, which was one of the final links in a chain of events that led me to writing this blog.
My brothers and I also found ourselves dealing with other family members who were aging, and we learned that we would need to provide care for them. So, I started sharing some of what I found in what I was reading. The last blog posts on Kitwood’s 12 actions to care seemed like a good place to start, but it is really important not to lose sight of the most important thing. The most important thing is to recognize ourselves for who we are, recognize what we need, and understand that this work of caring for ourselves and each other is hard. What is more, we are trying to maintain networks of care in an economic environment that is not favorable to making sure everyone has access to care. This means that often caregivers provide care at an economic penalty to themselves, and only those with means have access to excellent care. We need to find acceptance and compassion for ourselves in this work of caring. When we extend compassion to ourselves, then we can extend it to others.
So let’s not get caught up trying to make sure that we are always attending to these twelve things that my friend and pioneer in dementia care Tom Kitwood names. Let’s spend more energy and effort on recognizing each other, so that we can recognize others and also be recognized, and attempting to honor the spirit of these actions to care. Recognizing those with dementia and ourselves as caregivers is really about respecting the dignity of all human beings. This is foundational for our work as caregivers. Beyond this, paying attention to creativity and enjoyment that arises in human interactions makes sure that we see the freshness of human experience as an everyday miracle we often pass by without noticing. Freshness means fun! Freshness means contentment with the fragility of life. Freshness means understanding the felt sensations of the body as something that we can enjoy together, through touch or mutual enjoyment of smell or taste.
I invite you to hold these actions to care lightly. Do you sense in them the power to enact a world of care that leaves no person with dementia outside of the orbit of care? I invite you to recognize yourself and others in your care. I invite you to negotiate what care looks like in good humor. I invite you to collaborate and play and use touch to sooth and please. I invite you to celebrate and find moments of relaxation and validate all the feelings that arise. May we hold each others feelings with care, even when they cannot be named. May we facilitate each other’s thriving. In our interactions maybe we can discover creativity and the mutual gift of each other’s warm attention and embrace.
