It may be tempting to let go a bit of all we know about quality dementia care in the face of COVID, as there is a lot we must pay attention to simply to stay safe. However, I believe that excellent, compassionate, creative care is more important now than ever before, and still possible, even in the face of the pandemic.
The more compassionate the care we offer, the more dementia doesn’t matter. The more engagement we provide, the more dementia doesn’t matter. The more creativity we bring to persons living with dementia, the more dementia doesn’t matter. The more dementia doesn’t matter for people who experience it, the easier it is for us to care for them. How does that sound?
Through the magic of ZOOM, I have had recently had the opportunity to gain inspiration from three experts:
1. ON COMPASSION: In a recent webinar, Chaplain Chris Beckman, Ebenezer’s Corporate Director of Spiritual Health, spoke about responding to a person who has experienced trauma. He emphasized the importance of not trying to take away someone’s pain but rather to give it space, acknowledge it, let be there and experienced. I imagine that the experience of having a brain that is not working properly is traumatic at times. Having a brain that is not working properly and seeing people in masks all the time, and/or not being able to see or hug people as usual, and/or not being able to even walk around as much as usual might be traumatic indeed. When we acknowledge the feelings of a person with dementia, we provide validation, a sense that they are okay with us and that we understand why they might feel that way, (even if we would prefer that they felt another way). One can always validate a feeling by responding calmly with empathy and compassion. Yes, you are angry. I can see that…Of course you’re upset. I would be too…What a great smile you’ve got right now! (We must not forget to validate the happier moments too!). People living with dementia thrive when we give them what Anne Basting calls “proof of listening”. They need to KNOW they are HEARD. SEEN. LISTENED TO. This is precisely what a good therapist or chaplain or friend will do for us. People with dementia are ordinary human beings who, as a result of their dementia, often have even more pressing needs than the rest of us for feeling valued, understood, and engaged in a deep way with those around them.
2. ON CREATIVITY: As part of Anne Basting’s Creative Care Institute this summer, movement artist Gabri Christa demonstrated how she regularly engages via Zoom with her 90-some year-old mother who is living with dementia, far away in another country. Their interactions are largely nonverbal. The first thing Gabri does before making the call is to center herself and to stretch a bit. She then reminds herself of her intention, which is to make her mom laugh, because well, her mom really loves to laugh. To demonstrate how a session might go with her mom, Gabri pretended that we (on the other side of her screen) were her mother. To begin the session, she waved and gave her mom a kiss by bringing her lips right up to the screen! Wow, those lips were big up close! She announced, “I’m drinking coffee!” raising her mug towards the screen with a hearty “Cheers!”and clinking her mug with the screen. Her mom loves to drink coffee too. Because her mother likes lipstick, they usually show each other their lipstick and put on lipstick together. They comb their hair simultaneously too. They often sing. Gabri also danced, moving her body so that her head appeared on the screen from the bottom, then from one side, then the other. Comically, she pretended to fall and at one point all you saw of her were her feet on the screen! It was all simple, charming and delightfully engaging. She and her mom often make up stories using simple homemade finger puppets. (These also get impressively big when moved close to the screen.) If you have a marker, you can easily draw eyes and nose and a mouth on the tip of a finger and presto, you have a finger puppet! It was a revelation to see how meaningful Zoom communication could be, with very few words.
Engagement is essential to building relationship. The connection between Gabri Crista and her mom is full of love, joy, play and presence. Having fun is an enormous part of being human. Are we finding enough fun to share with our loved ones, even when they have dementia? For you and the person you care for, the answer may not lie in finger puppets and lipstick, but the point is to think about what does bring your loved one joy, and to find ways to deliver that, whether you are connecting in person or via Zoom!
3. ON ENGAGEMENT: In Anne Basting’s exciting new book, Creative Care, she supplies lots of ideas for meaningfully engaging people with dementia. One way is by posing “beautiful questions”, questions that you can’t answer with a yes or a no, but which open the mind and invite imagination. There is NO WRONG ANSWER to a beautiful question. Think how many questions we ask each other each day that are perhaps not exactly described as “beautiful” :
· Are you ready to get up?
· Do you want eggs or cereal?
· Shall we sit here or go outside?
Of course, these kinds of questions have their place. They are handy when trying to encourage someone to do something, and they can make choices less overwhelming. But notice there are only two answers to each question: this or that, yes or no.
Anne suggests that, for example, you simply take the opportunity to look out a window together and ask the person you care for the following questions, listening deeply to the answers:
· What do you see?
· What you hear?
· What do you feel?
· What do you think that tree is thinking?
This conversation might well turn into a moment with deep meaning for you both. You might try writing down the responses you get and build more beautiful questions from those.
Please keep in mind the importance of engaging with meaning, with fun, with joy, and with empathy and compassion as we continue to deal with dementia in the time of COVID, and to see if we can make it more and more like dementia doesn’t matter!
Thanks to Chris Beckman, Gabri Christa and Anne Basting for the sensitivity and insight that inspired this blog entry.
--Marysue Moses, Dimensions® Program Coordinator, firstname.lastname@example.org