JOY IN THE MOMENT
JOY IN THE MOMENT
Living in the moment is a concept espoused across many different religious views. That idea moved into the mainstream of American life some years ago. The point here is that the dementia person is living in the moment without any training or intent to do so. We who interact with them need to know that and make it work for them and for us. They live in the moment on a continuing basis—emotionally, cognitively, in every way; and that is true for most or all of their waking life, at least for dementia that has progressed into the middle stages.
It is possible to make those moments unhappy, as we interact with this person who can be difficult—stubborn, unpleasant, even angry, sad at their circumstances. As I have written recently, sadly I did that sometimes for Beverly & for me. Essential to making the world better for all is to avoid arguments about anything, arguments that never succeed. Instead we can use the magic of “redirection” or “happy lies”, as written about in an earlier blog. We should find a way to live in their world enough to appreciate how disagreement or confrontation will fail.
And we should also avoid telling them information that is sad, since that information will not stick in their memory. An example here was my response to Beverly’s repeated question about whether her Mother was alive. Telling her that her Mother had died several years ago only brought sadness, but the fact of the death was never remembered. So, in her best interest, I learned that I should simply say something like, “We need to visit your Mother.”
The best practice is to find ways to help the person with dementia find Joy in the moments we are with them. The following reflect some of my activities in that regard as well as some sources such as Brackey’s book (Jolene Brackey, Creating Moments of Joy).
THEIR STORIES. Early in the disease, it can be great to get them to talk about themselves, especially those stories of their life. It was always great to engage Beverly in talk of how we met, where we had lived, events in the life of our children, her career. We can all do that with other dementia people we are with, even if we don’t know those stories in advance. And some unhappy stories might come, but it is best to find and repeat the joyful stories, at least those that we can laugh at in retrospect. And they can tell them more than once—to their happiness.
As the disease progresses, it may be harder for them to tell the stories. Of course, if we knew those stories or recently learned them, we can start to tell them back to them. And we can even tell those stories in front of them to others. I had a few favorites that always resulted in laughs from her and the other listeners, often a staff member, such as a Nurse. Beverly especially enjoyed the story about our first date; my gosh, that was about 58 years ago. It was a blind date and I knew almost nothing about her. As we drove along, there was a back and forth about her background and mine. That culminated in a dramatic difficult moment that hung for a long time. It was not a happy moment, but it is now one to laugh at. She told me that she was from this town in Arkansas. (Don’t ask me to explain my response; my only claim was that my family teases a lot, though this was a stupid tease at this moment.) So I said, “I thought that sounded like a hillbilly accent.” My stupid move was not justifiable, but I (and she) can at least laugh about it now as time has passed. Then she was immediately furious; as I recall, her face turned bright red and her vocal response was more stutter than words. Immediately aware of my error, I apologized for the next half hour or so until she calmed down. Now this is a great story to tell in front of her to anyone who will listen to something about our relationship. They often ask, “Did you really say that?” And at that moment, we are all, including Beverly, laughing at the story. In previous times (before the late stages of the disease), she remembered this very well and thought that it was very funny.
Many other stories of her Nursing career, especially those where she responded cleverly and humorously, several of which involve a difficult physician. She loves to hear those stories recounted and especially so when there is a crowd around to hear them and credit her with clever humor. There was usually great laughter; she always showed that she felt joy.
And I bragged to others, in her presence, about her Nursing and Nursing Administrative career. A favorite was told me by Carol Wilcox, her long-time colleague in Home Health. Beverly & Carol were several times faced with firing an employee who was failing in their work. That person was brought into the office to meet with them; there was a long conversation, after which the person agreed to be no longer employed. And then that person thanked Beverly. When I told this story, audiences were astounded and pleased. Beverly felt their awed reaction. We can all use those moments when someone else brags about us, especially to an audience. For the dementia person, this is a magical moment.
READING STORIES. And there may be fictional stories to be read to them as a way to find joy; just find simpler ones that are not too long and do not require extended memory for characters and events. Children’s stories can work well, especially happy ones. Holidays make this easy, so that Halloween, Christmas, etc. can be especially useful. A few suggestions of children’s stories: Where the Wild Things Are, Corduroy, various Dr. Seuss.
PHOTOS/VIDEOS. Again, in earlier stages, it is valuable to bring photos and videos of them and of people they know, especially family and close friends. Scenery shots may be pretty and may elicit a positive reaction, but people pictures are the key. It was always worthwhile to bring a photo album to review--photos of us, our children, family, and friends. As the disease progresses, vision suffers greatly, so bring pictures before this loss. Even then, you can show a picture they might not see well and say, “See, here is Erik, when he was a little boy, learning how to ski.” “Here are you, Larry, and Wray when you were just little…” Again there is likely a story to tell about the picture.
THEIR APPEARANCE. And anything related to appearance is important, for men as well as women. And that appearance can bring joy, too. Early in the process, dementia patients can see it for themselves. As their vision and processing diminishes, it is always great to hear from someone else how beautiful/handsome they are. I am astounded at how often Caregivers pick out great clothes for Beverly (a special thanks to Tracey who found many great clothes for bargains). Beverly has always paid close attention to appearance. Men too want decent clothes, a shave and haircut as appropriate and their hair combed. Beverly wanted lipstick and some makeup; show them what they look like in the mirror; even if they don’t see themselves, talk about how great they look.
MAKING CHOICES. And Brackey suggests, it can be valuable for their Joy to have them “make choices.” I think that is true, but only if one is careful about the choices and process. Having too many choices will not work well; and simple choices must be provided. The process should be uncomplicated or it will be stressful for them. At a meal out, look carefully at the menu and select two items that they would generally like. Tell them those two items and ask which they would want. If they cannot seem to decide, you can say, “I think you would like the chicken.” If that does not work, try the other alternative: “I think you would like the pancakes.” A broad question such as “Which dinner would you like?” is very likely to fail. Similarly, “What would you like to watch on TV?” is not likely to be effective with anyone past the earliest stages of Alzheimer’s (and most other dementias). Hopefully you know what TV shows they like and can make one or two specific suggestions. Picking which clothes to wear likewise; which (of two) would they like. If they select colors that do not match, who cares? And if they still want the shirt or blouse from yesterday, now somewhat dirty, make that happen. Choices are about finding “joy” and not about our taste
MUSIC. And music is powerful for many—from early in dementia through very late. Their ability to hear seems to be well maintained long after they are visually impaired. They appreciate the rhythm of music and enjoy the melodies. Lyrics are likely irrelevant. Be careful negatively emotional works, such as Mozart’s Requiem. They, as we, can feel the power of the emotion of musical works, in popular or classical. But a piece like “Crazy,” while a sad story, is not musically “down” like, say Clapton’s “Tears in Heaven” or Cash’s “Hurt.”
The facility brought in entertainment nearly every day (at least before Covid, which has changed a lot since visitors cannot come in). Happily Jen is there several times a week. Beverly still sings along with many songs, and still creates harmonies since she is truly a natural musician. She still moves a lot to the rhythm. But most residents can be brought “to life” by music, especially “their” music. And one standard for “their” music, propounded to produce the strongest response, is the music that was popular in our teens and twenties (roughly age 15 – 30 years). Of course, individual differences must also be considered.
The issue of playing recorded music for her has long been hard to figure out. She was largely never in her room except for sleeping. A device she could carry around, or be attached to her somehow, was not workable. She would leave such a device somewhere or someone would take it; further, she could not really operate it. Someone could have started a song list, but that is all. And, of course, music that she could hear would have been intrusive to others in the environment; headphones or ear plugs would not work for her. Since her recent medical issues (late in 2020), she has been in a wheelchair with notably more time in her room. So Christmas time she received Alexa for her room; this a gadget you can speak to and ask for music available on your internet. Since then, in the morning when Caregivers are getting her up and ready for breakfast, they can simply say “Alexa, play Beverly songlist” or some other request. And the same for her naps during the day; and at night time getting ready for bed. One Caregiver asked for “Mellow classical music” at bedtime and she loved that. Reports I have received indicate that this is an improvement in her quality of life. Of course, she is a music fanatic, but something similar could be valuable to most; just find the music they like for regular listening.
YOUR EMOTIONAL REACTIONS. Do not overlook your own emotional state; a dementia patient with little left in the way of verbal understanding or speech can still read more about your state of mind than would seem. Beverly has continued to “read” the reactions of others at this intuitive emotional level. And they are likely to be drawn into your emotional state, without “Joy” in the moment.
And connected to those emotional reactions is TOUCH. We need to be touched, and touch is significant for those with dementia. It may not be so obvious, especially as the disease progresses and their capacity to ask for it is limited. Holding hands is significant, including rubbing the back of the hand and forearm; and hugs are always great. Beverly was always a touching person. (COVID has deprived us all of much of the touching we would appreciate.)
Finding “Joy” in the moment is critical to your loved one’s happiness. Of course, we cannot provide them joy in every moment. And we know that emotions do not carry over for them as well as they do for those without dementia. Yet I would bet that there is still a “flavor” in the brain from those previous moments of “Joy.” The music in her room does, I think, partly explain Beverly’s regular happiness when I have seen her on Facetime recently. We can all use more “Joy,” so maybe we should treat ourselves with “Joy” and also treat our loved ones with dementia their Joy.
“Living in the moment is an important trait of much of dementia functioning.” Brackey. And why not make more of those moments joyful? It is critical to find what they love; that is certainly how to bring them joy.