I’m also thinking about how our lives over the past nine months have been put into this Mixmaster of the pandemic, along with election stress, and racial and societal tension. Routines, work lives, leisure activities and opportunities to socialize have been mightily disrupted. For too many people living with dementia, the changes they and their care partners experience are likely even more dramatic, due to the isolation endemic to their situation.
When someone receives a diagnosis of Alzheimer’s disease or any other sort of dementia, friends sometimes scurry away, not knowing how to interact, not knowing how to respond, not wishing to feel helpless and depressed in the face of a friend’s decline, or simply because they do not understand how they might make a significant, positive difference. Being a friend to a person with dementia is being a friend indeed. I applaud those of you who do that and encourage everyone to open to that possibility. There are resources that can help you be successful. Here’s a good place to start: https://dementiafriendsusa.org/become-a-dementia-friend
Care partners become exhausted filling the role of be-all-and-end-all personal caretaker for their family member or friend. I can only imagine how COVID has exacerbated these dynamics.
So. The season of GIVING is upon us.
At this time, I think one of the best things we can give to a person with dementia, or to their care partner, is comfort. Comfort comes in so many forms: a listening ear, a warm sweater, a handwritten letter in the mail (remember those?), a memory shared, hot soup on a cold day, a text, a song sung over the phone…there are endless possibilities. Each of us human beings have certain things which may give us comfort but may leave others scratching their heads. When we provide comfort in those person-specific ways, we make a deep difference. It strikes a strong chord, activating sweet memories and gently plucking the heartstrings of the individual. We give the person a grounding experience, a reminder of who they are. How important that is these days, when persons with dementia (certainly those living in assisted livings or care centers) are not experiencing as much physical touch as they need.
I suggest that care partners of persons with dementia create two lists: 1) What Gives Me Comfort and 2) What Gives _____________(name of person with dementia) Comfort. A fun activity might be to brainstorm with a person living with dementia questions like these: What brings you comfort?...What is comfort for you?... Consider what comforts you both now, as well as what gave comfort when you were young children, teenagers, young adults. There is no wrong answer, and all answers may be useful.
My nose was running the other day. I remembered I had some Vicks VapoRub in the closet. (Ancient Vicks VapoRub! Yikes – the expiration date stamp was “Aug 09”!) Astoundingly, it still had an intense aroma, giving my nose, chest and throat that fondly familiar, delightfully over-the-top mentholated, tingly cool sensation. For a moment, it sent me right back to gazing at the gabled upper walls and the blue and white wallpaper pattern of the bedroom in which I grew up, along with memories of my mom bringing meals to my bed when I was sick.
I digress…But the point of these lists is to SHARE them with people who might be able to assist you in collecting the right tools for comfort giving…and/or receiving. If you care for someone at home and a friend should casually offer, “Just let me know if you need anything around the holidays,” you could whip out your list and name something specific (i.e., “CHOCOLATE!”) that they might pick up, find, make or do for you and/or yours.
If you have a friend or family member living in an assisted living or care center, please be sure that the staff is given a list of those things that provide comfort for that person. You should be asked that question upon move-in and encouraged to answer with plenty of detail.
Jolene Brackey is a visionary dementia care specialist. She wrote Creating Moments of Joy, an easy to read guidebook for people who care for persons with Alzheimer’s and other dementias. She suggests that upon move-in to long-term care, families of those with dementia should bring in a cardboard box of selected items that symbolize the person, things that are meaningful to them, items that stimulate memories, encourage engagement and…provide comfort.
I think it’s worthwhile (and fun) to take a moment to ponder this question: If YOU knew you were going to get dementia, what 3 things would you want to be sure to have in YOUR cardboard box? (Don’t worry, it’s perfectly okay to put more than 3 things in your box. The more the merrier.)
If a person, like me, is obsessed with Shakespeare, a volume of his Complete Works should be in there. (My box will be heavy. I also like rocks. I am seriously thinking of assembling my box in advance, just in case, to make sure nothing is missed!)
If these ideas sound sort of radical, well, good! Radical change in how we tend to think about and care for persons with dementia is in the air. These ideas are sensible and practical. They can make the jobs of caregivers and care partners alike ever so much easier.
We who work in the field of dementia care need to know how to provide person-centered responses that will be helpful, should a person with dementia become upset. If people with dementia do not get needed support and comfort, they will have a NORMAL human reaction to those needs being ignored. Anxiety, frustration, anger, and (when needs are continually ignored) even aggression may result. These emotions and the actions that accompany them should NOT be given the shaming label of “behaviors”. Let’s talk instead about “expressions of needs” or, “behavioral expressions”. These sorts of communications require a thoughtful response (not a knee-jerk reaction). A response requires someone to step up, step in, (or in some cases, to step back) and to muster the compassion, curiosity, and patience required to determine how comfort can best be provided to that person in that situation.
Thankfully, we CAN give comfort, yes, even during the storm of this ongoing pandemic.
Happy Thanksgiving to all.
--Marysue Moses, Dimensions Program Coordinator, firstname.lastname@example.org