Ch. 58 Care Partner Goals: Safety, Pleasure, Joy
Neuroscientists write that the best thing we can do for a newborn child is to offer that child safety in the forms of parental reliability, bonding, emotional comfort, and nurturance. Once a deep sense of personal safety is installed, that child and eventually adult will have a heightened capacity to experience pleasure and joy. Here I define “pleasure” as the experience of positive but ephemeral moments such as a tasty meal, casual sex, watching a movie (all without being distracted by fear or insecurity). I define “joy” as something deeper than pleasure, a more spiritual experience that fills someone with a sense of greater meaning. You might feel joy at a church service, walking through nature, or perhaps while making love.
Lately, I’ve begun thinking about what it means to be Pat’s care partner. I believe that being a good care partner means that I should help Pat gather all three experiences I mentioned above: safety, pleasure, and joy. (She, of course, helps me experience those states.)
Let’s start with safety. My perception is that Lewy Body has eroded Pat’s sense of safety. She often has scary dreams and wakes up certain that something has gone wrong and bad results will follow. During daytime Pat is less able to understand news reports and cannot as easily follow conversations as once she could. That frequently means she feels confused. I also have noticed that Lewy Body has made Pat less trusting of others, even friends and long-time associates. Her first response to my saying someone has asked us to call is more likely to be “What do they want?” than “Yes, that will be nice.” Pat does trust our family members, though, and that is good.
The question, then, is how can I help Pat feel a little safer? What seldom works is to tell her she is hallucinating or imagining problems although sometimes she does accept a reality check such as “No, Cindy isn’t here, she’s at her home in Rochester.” Physical touch and holding help; just telling Pat that we are safe right now sometimes allows her to breathe easier. Recently, we’ve begun whole family Zoom sessions every Sunday and that too seems to help Pat feel safe and connected. And, as my first mentor told me, “Ron, it doesn’t help your client if you panic when she is panicking.” In other words, staying calm and feeling safe myself is better than becoming agitated or defensive.
Now to pleasure. Pat often feels poorly, partly because her immune system has been compromised by Lewy Body. For example, she suffers from skin breakouts and digestive problems. I think Lewy Body also tends to exacerbate Pat’s depressive affect, particularly when the sun is hidden behind clouds during winter and during our Spring rainy season.
I love cooking and baking foods Pat really likes. Blackcap pies; medium rare cheeseburgers; cookies; sirloin tip steaks. Good food is a wonderful source of pure, unadulterated pleasure. I also try to find entertaining shows we can watch (particularly important during the present Covid-19 shutdown) and jigsaw puzzles we can work on together. Pat likes to read mysteries, another source of pleasure, but lately she’s found plenty of those scattered throughout our house and so she hasn’t needed my help.
Joy. I’m sure you know by now that Pat and I take 1-2 hour country drives almost every day. Sometimes, especially when we reach the top of a forested hillside, I’ll call attention to a rocky formation or a cluster of birches and I’ll say they are pretty. “They’re beautiful,” Pat replies, and I sense that she feels a deep connection with nature, a spiritual union. I hear spirituality in her voice and feel it in Pat’s touch during those moments.
Wonderfully, especially caring physical intimacy sometimes feels amazingly significant for both of us, a “super bond” that simultaneously creates safety, pleasure and joy.
Safety, pleasure, joy. When I can help Pat receive these gifts, I feel gifted in return.
Pat’s comments on Care Partner Goals: Safety, Pleasure, Joy.
I feel that Ron’s last sentence goes both ways. If Ron sees me reading or busy or doing something on my own he’s usually happier. When I don’t know what to do he gets confused, but I don’t know what to do all the time. I find that if I can keep myself busy doing the things I usually do that he feels better, calmer.
[Ron to Pat: What brings you feelings of safety, pleasure, and joy?]
Pat: Kindness, awareness of what’s going on, reading, other little jobs around the house, and talks between us.