Tag Archive | end-of-life conference

Dementia, Music, and Talking with God

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Last Thursday Mim and I took a day-trip to Lake Geneva for Rainbow Hospice Care’s 14th annual “End-of Life Conference.” The theme this year was “A Focus on Dementia.” The whole conference was excellent! This is what continuing education is like for people in our business – assisted living.

The morning keynote speaker was Teepa Snow who helped us understand the functional limitations of individuals in each of the seven stages of dementia. She taught us how we can be most helpful when we try to provide care for residents in these stages, as well as how to care for their family members. As Teepa’s speaking and actions evolved into the typical behavior of a person in each stage of dementia, a lightbulb went on in our minds. So that’s why… Now I understand… Behaviors of many past residents came to mind.

The closing keynote speaker was Jolene Brackey, the author of Creating Moments of Joy. Throughout the past 15 years that Mim and I have been doing assisted living in our home, we have given away many copies of her book. The majority of people we have cared for have had some degree of dementia, and this book provides practical examples of how to provide “moments of joy” for these individuals. We’ve made the book required reading for anyone who works with us, and we routinely give the book to the families of our residents with dementia.

fullsizeoutput_22a6Jolene Brackey didn’t disappoint us as a speaker. At the end of a long day of learning for all of us at the conference, she provided us moments of joy as she told us stories and gave us practical examples for sharing joy freely with our residents.

One of the afternoon Breakout Sessions that I found particularly interesting was “Music and Memory.” From my own experience, I’ve known that music still communicates with many people who have very advanced dementia. I used to play the piano monthly for a senior respite organization in a nearby town. One of their clients was a man in his 50s who had early onset Alzheimer’s Disease. He would sit in the group all day long without saying a word. But when it came time for the sing-along, he would join in and sing enthusiastically, remembering all the words of the golden oldies and hymns I played for them.

fullsizeoutput_22a8The “Music and Memory” Breakout Session was an update on the progress of a non-profit organization called “Music & Memory.” The vision of “Music & Memory” is to provide the means for caregiving organizations to give an iPod with a personalized playlist for each person in their care. The playlist includes the favorite songs of each individual, often the popular hits of their high school years. Research has shown that people, even in the advanced stages of dementia, exhibit signs of happiness when they are listening to their favorite music.

In this session, we were asked to pair up with another session participant to learn about their favorite music – something we would need to do with a resident or their family if we were to try to create a personalized playlist. My partner was a college student, whose favorite music type is heavy metal, and whose favorite band is Metallica. In contrast, I’m nearly 70 and my favorite music type is sacred piano, and one of my favorite performers is Steve Hall. Our music vocabularies had almost no overlap. If I had to prepare a playlist of her favorites, I would really struggle. But I enjoyed talking with her and learning a little about heavy metal music. I now have a little better understanding of the incredible breadth of music that can speak to our souls.

Thinking about the power of music is something I’ve been doing for several months. As you may know from previous blog posts, I’m writing a book with the current working title of Talking with God through Music. I’ve actually been working on this book for over a year. Originally I intended it to be a daily devotional with personal reflections on 365 of my favorite hymns. I started writing the book in late 2016, and I started the project by writing reflections on hymns of thanksgiving. Then I worked on Christmas Carols. The more I wrote, and the more I organized my favorite hymns into different categories to figure out where in the year they should be placed in the book, I decided it made sense to start the book with a month’s worth of hymns based on Psalms – the hymn book of the Bible. I finished writing the Psalm section of my book the last time I was at our Christmas Mountain timeshare, a few weeks ago.

Now that I’ve written 31 reflections on Psalm-based hymns, I’ve decided to publish this collection of hymns and reflections as a separate book, Talking with God through Music: Reflections on My Favorite Psalm-Based Hymns. My plan is to use this 68-page book as a prototype for the larger book. I experimented with a lot of new things in writing this book, and I want to find out if all my extra homework is worth the effort. I did quite a bit of research into each hymn to be able to provide information about the author, the composer, and the historical context, along with my personal reasons for choosing the hymn as one of my favorites. I also learned to use music-writing software to create a melody line for each hymn so that readers can actually see the music and lyrics next to my paragraphs to help them remember what the hymn sounds like – to be able to sing it in their mind or even out loud.

I hope that readers will give me feedback on the prototype that will help me tweak the style and format for the larger book. My goal for the final book is to help readers discover how music, hymns in particular, can enrich their ability to talk with God. Music is the language of the soul. As St. Augustine said more than 1500 years ago, “Whoever sings prays twice.” And, as we were reminded last Thursday, music is an amazing means of communication for everyone, regardless of their cognitive state.

fullsizeoutput_22a7If you would like a copy of Talking with God through Music: Reflections on My Favorite Psalm-Based Hymns, let me know. I’ll be happy to send you one. I’d really appreciate your feedback on the concept and structure of the book before I put together my next book. My goal is to submit the text of the prototype to the publisher this week, and to receive the printed copies within a week or two. I’ll write another blog post when I have the books in hand.

 

A Day to Think

Floe-Marian faces 2015Last Friday morning, bright and early, Floey and I had quite a discussion. This is how it went.

“Where were you, Mom? You were gone all day yesterday – from before breakfast till after dinner, almost bedtime. Our friend Kathy was here to take care of Carolyn and Ann and me. She even took me for a couple walks. But I missed you and Mim. Where in the world did you go?”

“Oh, I thought we’d told you, Floey. Mim and I went to the Olympia Resort and Conference Center in Oconomowoc.”

“You went on a mini-vacation, and you didn’t take me along????”

“Not exactly, Floey. Rainbow Hospice Care held its 12th annual End-of-Life Conference there. The theme of the conference this year was Respecting Differences at the End of Life. And they had some wonderful speakers. The speakers were so good I didn’t even get sleepy, even though I had to sit still and listen all day long.”

“How about Mim? Did she stay awake all day, too?”

“Just about. I think I saw her eyes closed once, but just for a few minutes.”

“Well, who were the speakers and what did they talk about?”

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The Rev. Dr. John Touhey

“The opening keynote speaker was the Rev. Dr. John Tuohey. He’s a Catholic priest with a PhD in Ethics, and is the founder and director of the Providence Center for Health Care Ethics in Portland, Oregon. He introduced a four-part model to help in analyzing ethical dilemmas in end-of-life care. He used case studies to help us understand how the model worked and how valuable it could be. He was a great keynote speaker, but he was even better in the breakout session we went to next. We worked through a couple case studies together. One was about a young couple from Saudi Arabia who were in Portland, Oregon for a few weeks to learn English. While in Portland, the woman had a severe asthma attack and could not be resuscitated. In the hospital, she was declared dead neurologically, but her heart didn’t stop beating immediately, and her husband insisted that she be kept alive on the ventilator until he could bring her home to Saudi Arabia. To keep her on the ventilator would mean that a legally dead person would be tying up a critical ventilator and other scarce medical equipment for at least five days, during flu season in Portland. Other people could die because this equipment would already be in use.”

“Wow. That’s a tough call, Mom. How was it resolved?”

“The family was quite wealthy and politically connected. The embassy got involved, and the issue was transferred to a judge in a federal court, who ruled that the hospital must keep the dead wife hooked up to the equipment for the five days until she could be transported home. We had quite a discussion about what was the best action to take ethically. What it boiled down to was balancing the interests of the husband, who in his culture didn’t recognize dead neurologically as being truly dead and the interests of the greater good – i.e., the person(s) who may need access to the scarce medical equipment that was being used to sustain a person who was already dead according to the American cultural and legal definition of dead.

Kindness was a word that came into the conversation a lot. Which course of action would demonstrate the most kindness – to the patient and the patient’s family vs. to the other people who would be affected by the decision.”

“It sounds pretty complicated, Mom. Were all the conference sessions that complicated?”

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The Rev. Ridley Usherwood

“Well, the second breakout session wasn’t complicated in the same way. It was fascinating. The speaker was the Rev. Ridley Usherwood, and the title of his session was Recognizing and Honoring Cultural and Spiritual Beliefs around Aging, Illness, Death and Grief. His ethnic background was Jamaican, his upbringing was British, and his life experiences have been all over the world, being a pastor, missionary, chaplain in the USAF, and now teaching at the University of Wisconsin. This session was really an overview of differences in how people of different cultures view end-of-life issues – African American, Asian and Pacific Islander, Latino/Latina, and Native American. I wished his session would have been twice as long, he had so much to tell us. But a key theme he kept coming back to was kindness, just like in the first session. Given cultural differences, we need to understand how to treat patients and family members with the most kindness.”

“Mom, was this a religious conference? The two speakers you’ve told me about were both religious – one a Catholic priest and the other a Protestant chaplain and missionary.”

“Not really, Floey. It was a professional conference for people who work for hospice organizations or are in some way involved with end-of-life care, like us. These two speakers just happened to be religious. The speaker for our third breakout session was Dr. Ann Catlett. She’s a medical doctor and is currently on faculty at the Medical College of Wisconsin and at UW. She’s the speaker who really made me think the most.”

“Really, even more than the one who talked about the Saudi Arabian couple?”

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Dr. Ann Catlett

“Yes. Even more than that. The topic of her session was End-of-Life Care for the Homeless and Other Marginalized Populations. She’s trying to get a small home set up in downtown Madison where homeless people can live and be cared for during their last few days, weeks, or possibly months of life. Think about it, Floey. Think about what it must be like to be homeless and sick and dying. You don’t have a bed to sleep in at night unless you can get to a shelter early enough to stand in line and hope to get in. You may or may not have a place to spend the day. You don’t have regular meals. You may not be able to see a doctor, but if you can, and you get medicine to help you get better – or at least feel better, you don’t have any place to keep it. And if you carry pain pills with you, you’re very vulnerable to having them stolen from you. I’d never really thought about what it’s like to be homeless and dying before yesterday.”

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Homeless Jesus Statue

Floey’s eyes filled with tears and she sniffed a little. “Mom, that makes me feel so sad for those people. Is there anything we can do to help them?”

“I don’t know, Floey. That’s why I said the last speaker made me think the most. We’ll need to keep informed about the progress she’s making toward getting an Adult Family Home for homeless hospice patients set up in Madison. Dr. Catlett told us about Joseph’s House, a home like that in Washington, D.C. She spent some time there last year learning all that she could that might help her do something similar here.

“Floey, can you guess what key word Dr. Catlett kept coming back to in her presentation?”

“Well, Mom, by the way you asked the question, I bet the word was kindness.”

“You’re right, Floey. Dr. Catlett said that when her own dad was dying, she asked him what was the most important thing he ever learned from his dad. Kindness was his one-word response.”

“Hey, Mom. Kindness is your word for this year, remember?”

“I sure do. I couldn’t believe that every speaker yesterday came back to that word as being central to their topic.”

Floey responded, “Kindness is a good word for all of us to think about. While you were gone yesterday, all of us at home were kind to each other, even if we didn’t spend the day talking about it. I guess that’s what’s most important. I’m glad you had a good day, even if I missed you. I guess it’s important to spend time thinking about the need for kindness in our world, and what we can do to help meet that need.”

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