Writing on this day before Thanksgiving, my favorite holiday, I am thinking about all the people I’ve known, loved, worked with, learned from and admired who have lived or are living with dementia.
Mary Ellen is top of mind today. She was supremely intelligent, stunningly beautiful, elegant, well-travelled, and maintained a wild sense of humor. As her dementia progressed, she exercised her love of rhyming more and more. She was famous for enthusiastically blurting out, at random, “If you get to heaven before I do, just drill a hole and pull me through!” One day as I was sitting with a small group of residents, Mary Ellen was clearly in her rhyming mood. So I challenged her to make up a rhyme for everyone in the group. She did not hesitate: “Marysue, how do you do, Millie, you are silly, Dottie Dottie two by four, can’t get through the bathroom door.” (Fortunately, Dottie was hard of hearing.) ”Peg has a funny leg, Bernice fell in the grease, Mary Ellen is swellin’!”
I think about Jean, who knew lots and lots of Shakespeare. Well, she was British, so of course she did! She spoke it simply and beautifully, better than some actors I’ve heard at the Guthrie, I swear! When she was on hospice and just a few days away from her departure from this life, I whispered some Shakespeare into her ear.
I think about Betty, the Amazing Betty, who had been a pole vaulter in high school and college. She used a walker now, but loved being reminded of her former skill. She drank green tea way before it was popular. Betty had travelled all over the world, by herself. You could not name a country she was not absolutely sure she had been to, although a few of them she was only “pretty sure” about.
And another Betty was a wonderful pianist who could sit down at a piano and play like a virtuoso, though she might not be able to tell you who the composer of the piece was.
And another Betty knew a ton of songs from musicals; we had a lot of fun singing them together…“Getting to know you, getting to know all about you!” When Betty sang, it was with great joy.
Another Betty had been an artist, quite a painter. She also knew how to fly a plane. She was deep, this Betty. I remember the day she was scheduled to move out to another place. Her needs had grown beyond what could be provided where I was working at the time. She was not yet aware that she was to leave us that day, but for some reason she came to my office in the early morning, stood in the doorway looking right at me and said, “Have a nice life.”
I think of Millie who danced up a storm. She and her husband had gone to ballrooms every weekend, for years and years. Millie was in great shape from all that dancing!
I think of Eunice…fragile, vulnerable, always wearing a fashionable hat Eunice, always looking for her mother, always needing to find her. Eunice had cared for her mother, who had lived with Alzheimer’s disease. Eunice was not alert to the fact that she was now in the same boat. Eunice had been an avid golfer and even had a photo of herself and Arnold Palmer together! She was very proud of that! And she was the most competitive Balloon Volleyball player I’d ever seen.
I think of my mom, of course. I see her soft brown eyes and feel the way she tilted her head and looked at me that one time I came to visit. It was pretty late in her journey with dementia, I hadn’t seen her for a number of months and I had wondered if she would recognize me. I could tell she maybe didn’t know my name but the love that radiated through those eyes just about knocked me over. She wasn’t speaking much, if at all, by then, although I heard that one time she came out with an excited exclamation of “Bacon!” when she recognized the smell on her way to the dining room.
I could go on and on, listing the strengths and passions and quirks of so many people I’ve known who have touched me deeply, who have cemented my desire to keep connecting with people with dementia and to keep working to make their lives easier and more fulfilling.
I have a friend and colleague who had a stroke a couple years ago. Yes, he has some struggles with word-finding, organization, and short-term memory. His whimsical sense of humor and his personality are delightfully present.
I am grateful for all these people mentioned here, and for many whom I have not mentioned, including people I’ve seen present at conferences who defy the stereotype we all too often latch onto when we hear that someone has “dementia.” Many folks are successfully living with early stage dementia and working hard to erase the stigma that surrounds that word.
I am grateful for the strengths and skills that people with dementia retain. I am grateful that people with dementia continue to be themselves. Yes, the packaging looks different, and there are adjustments of expectations to be made on our part, not to mention theirs, but the spirit that drives people with dementia is unmistakably intact, if only one can learn how to connect with it. If only we do not give up on them!
-- Marysue Moses, Dimensions Program Coordinator
Integrity. That word has a lot do with truth and honesty, things that can get a bit murky in dementia care, as we work to validate feelings and honor the way a person with dementia views the world. At our recent Mission Breakfast event at Ebenezer, I was asked to prepare a story that related to Integrity, one of our five core Ebenezer values. To tell the truth (ahem), I wasn’t quite sure (at first) that I could spin the story I really wanted to tell (yes, I chose the story before being assigned the value) into being the perfect fit for the value of Integrity, but I believe I’ve come around!
Integrity in dementia care has lot to do with honoring and celebrating who each person is, at their core, connecting with their passions, skills, accomplishments and dreams.
At one of our sites there was a resident named June. She was British, and I learned she had had a career as an opera singer. I was so excited to meet her and so hoping I could get her interested in the arts project I was involved in at her site -- using Shakespeare, Poetry and Music to engage residents and stimulate their memories around the theme of love. I visited with June one day in her room. She told me about her singing career, about touring overseas, performing in Prague and many other capitals of Europe, even singing with Pavarotti, I think. Lying down in her bed as we chatted, June was most cheerful, hospitable and animated. Clearly she loved reminiscing about her career. She told me she had also performed onstage in many musicals. I asked her what parts she had played. In her Northern British accent, she proudly replied: “I played Laurie in Oklahoma! But y ’know,” she continued, “My voice isn’t what it used to be, and I really don’t sing much anymore.”
I could hardly wait to see if we could get June out to attend the sessions that were part of our 6-month long project. She didn’t make it to the first couple, but the third one was all about music, and she was feeling well enough to come along. Bright-eyed and very engaged throughout the session, June was often the first person to give a response when Jeanie Brindley-Barnett of MacPhail Music Center asked the group a question. Near the end, Jeanie played the song “People will Say we’re in Love”, the famous love duet from Oklahoma. Then, Jeanie very casually invited June to sing it.
June did not hesitate. Her voice was creaky and warbling at first, but she put her heart into it and when she hit those high notes near the end of the song; her voice simply soared across the room, pure and free. Everyone in the room had an experience of the singer she once had been. Memory care residents and staff applauded heartily when the song was done. I looked over at Jeanie and saw that she, like me, had tears sliding down her face. I remember thinking in that moment that our project was already a complete success as far as I was concerned, based solely on what had just happened, because one resident had that opportunity to share her talent in front of a group again.
Unfortunately, June did not attend our other sessions. She came to just one, wasn’t feeling well, and had to leave almost immediately. Her health was deteriorating. In fact, she died before the project was completed.
A month or so after she passed away, I arranged to meet with June’s daughter. I was curious to hear more about June’s career, and thought there might be some recordings or programs in existence that might come in handy for the documentary film we were making about our project. (The day that June sang was not a day we had the film crew on site!) Her daughter let me know that June’s memory, once she got dementia, had actually….expanded…the extent of her career. In fact, June had never toured the capitals of Europe. She had not sung with Pavarotti. She had done a lot of community theater and some non-professional light opera performances! June did indeed play Laurie in Oklahoma, but she did not have the career she had described to me and many others in some detail, except in her imagination, fueled by dementia!
I admit I was a little disappointed at first, finding this out, but then I thought, wow, who wouldn’t want the kind of dementia where you remember your fondest dreams and expectations for yourself as reality?! Given the choice, I think that’s a kind I’d sign up for! There’s integrity in there for sure!
-Marysue Moses, Ebenezer Dimensions Program Coordinator