Caregivers Out Loud
How can we break down barriers and humanize the caregiving process? Through the power of pure emotion, unlocked through music.
No matter what your musical background is, music used intentionally can be beneficial to improve health and well-being. Not only for the care recipient, but for you as well, as a caregiver.
In this episode we will hear how music enhances the care experience. Bev Foster, a co-founder of the Room 217 Foundation and its Executive Director shares her experience caring for her dad and also for her grandmother who journeyed through dementia. Bev incorporated music into his palliative care and found that it was a very helpful tool both for her father and for herself. So much so that Bev started a foundation to share music as a caregiving tool with other caregivers.
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- “When I left the hospital that night, which of course was the last time I saw Dad I had these two thoughts in my mind. I guess questions really. One was, do people really understand the power of music in living and dying?” – Bev Foster
- “And it just helped me deal with the grief and I felt like I could contribute again in a different way than cookies and those kinds of things. Something that actually reached his soul and really deep inside of his spirit. It was the songs that we’d played over the years that I would play. And, lots of times there were just no words. We would just have tears between us, there were tears of understanding, certainly tears of grief, but also just that expressed our appreciation for each other. But it was in this room, in a hospital not far from here in a rural hospital in room 217 where my dad did die.” – Bev Foster
- “But with my grandma, What I found as I was losing her, dementia is a long journey, right? It’s over years and every visit you see more loss and I needed a way to express what I was feeling and the grief I was feeling in losing her. And so for me, I wrote a, and this is something I can do and it helps me, it’s a part of my self care process, is writing songs to help express and contain those emotions.” – Bev Foster
- “I was gonna sing that for you, the song I wrote for my grandma. Cuz. I just think this is a song I wrote five years before she died.” (song) “Pictures in our hearts will never fade away. The frame with the love we shared mounted there to stay. Colour, places, sounds all tucked away. We’ll be with each other in these pictures. We’ll be with each other in these pictures.” Clip of Bev Foster’s song “Picture In My Heart”
- Music Care by Room 217 Foundation https://www.musiccare.org/
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Bill: How do we break down barriers and humanize the caregiving process? Through the power of pure emotion, unlocked through music. No matter what your musical background is, music used intentionally can be beneficial to improve health and well-being. Not only for the care recipient, but for you as well, as a caregiver.
Today, we’ll hear how music enhances the care experience. I sat down with Bev Foster, a co-founder of the Room 217 Foundation and its Executive Director. In this episode, Bev shares her experience caring for her dad as she incorporated music into his palliative care and found that it was a very helpful method, both for her father and for herself. So much so, that Bev started Room 217 as a foundation to share music as a caregiving tool with other caregivers.
Bev: Even when I was a teenager, I had some sense of music’s power to accompany people in difficult situations, especially in life threatening illness and that sort of thing. And even then, and this would’ve been, in the seventies-ish when we were still using cassette players, I would make hour-long recordings for people of their favourite music and just play it on the piano and give it to them as a gift. It was my, I probably did that better than making cookies, if you know what I mean.
Bill: What a lovely gift. Really.
Bev: To come alongside them. And so I’ve always had this intuitive sense. I went into music education, so, taught children and high school students for many years. And I had a private studio and have always been involved as a church musician and in the community and that sort of thing. So in various sort of ways as a musician I’ve lived my life, but you know, there’s this one caregiving experience.
In fact, there were two, actually, but the one really catapulted me into the work I’m doing today. And that was with my dad. I mean, he had a short terminal illness and you know, music had been such a thing that connected us. I mean, when I was growing up, we played music all the time, him and I. He had an organ and I had a piano and we just played, like literally for years.
Bev: Yeah, and so it seemed like when he was dying that this would be the way I could support him and come around him.
Bill: Of course.
Bev: It was, it was just, I remember days when he would just sit in his rocking chair and I would just come and play his organ or play the piano and you could tell the music just washed over him and helped him just deal with what he was dealing with. And it certainly connected us.
Bill: Yeah. I’d say it would have helped you too, actually, in that. You had that lovely connection.
Bev: Oh, totally. And it just helped me deal with the grief and I felt like I could contribute again in a different way than cookies and those kinds of things. Something that actually reached his soul and really deep inside of his spirit. You know, it was the songs that we’d played over the years that I would play and lots of times there were just no words. We would just have tears between us. There were tears of understanding, certainly tears of grief, but also just that expressed our appreciation for each other.
Bev: But it was in this room, in a hospital not far from here in a rural hospital in room 217 where my dad did die. And the night he died, all of us, my three brothers and my sisters, my two sisters and my mom were around his bedside, and we sang the same songs, whether we remember the words or not, right? Like, it kind of wasn’t even about that. It was just about surrounding dad and bathing him in those songs and melodies really. And those assurances for him that helped transition so that impacted me, Bill, beyond I’d spent my life in music, but at this point, I had never seen anything quite like it. My dad tried to sing along with us as he was subcutaneously morphing, but they were his songs, right?
Bill: Yeah, absolutely yeah, and that inner awareness that he kept even in spite of the debilitating effects of medicine and whatnot.
Bev: But he sang, like he tried to sing right?
Bill: Of course!
Bev: It was just incredible and I don’t know, it was really quite something and I think when I left the hospital that night, which of course was the last time I saw Dad, I had these two thoughts in my mind. I guess questions really. One was, do people really understand the power of music in living and dying? And the other one was, do caregivers have the resources and the education to know how to actually make this work for families? I mean, we’re resourceful and a musical family, but like we almost missed it!
Bill: Those two questions brought the connective possibility to caregivers, around how to transform the care experience with music. By creating Room 217 to empower caregivers, they bring people together to have music integrated into the care process. The power of music can break down barriers and become a human-based approach, in comparison to the medical process which can be hard to navigate and extremely structured. Music is adaptable and can become a standard of care to impact your quality of life.
Bev: We really just found there was this, there was this, need almost for caregivers both we’ll say family caregivers, volunteer caregivers, and professional caregivers, who already use music to learn how to use it better. What I mean is more effectively.
Bill: Yeah. So say, describe that. What do you mean more effectively.
Bev: And I would even say more responsibly. I mean, look, just because you put music on doesn’t necessarily mean it’s gonna have the intended outcome.
Bill: True! That’s true. My mother had a group, where she eventually died in this care home, and they would play this music and the attendees, the people who would come to those say, “We don’t want any more of that church music. How about some Abba?”. From these older folks, so they were actually saying, “Hey, this is the kind of music we are interested in, and not just what you, as the staff are interested in”.
Bev: But of course, and that’s the power of music, right? I mean, it’s so connected to our life journeys and we all have different kinds of experiences with music and musics through our lifetime. And we’re emotionally connected. I mean, the most effective music we can use is preferential music. So in the case of your mom, it might have been hymns. In the case of other people, it might be Grateful Dead. Like, you just absolutely can’t, you don’t know for sure. And the other thing I have learned, particularly through a couple of other projects we’ve done, even intercultural stuff, you can’t assume.
There are people that, may enjoy musics from other cultural musics. And that’s what they prefer. That’s what they enjoy. And it all has this emotional connection, but we also know just talking about effects, that music is so closely related to our neurobiology as well.
You know, as my dad was dying in one town, my grandma was dying of a very different illness, vascular dementia, which of course has a longer trajectory and in the town I lived in actually. So I spent a lot of time with her and again music had been a big part of our relationship over the years, but it became the means of how we connected in those last five years. She lost her words, it really was a part of every visit we did.
Bev: And then just back to the neurobiology part, because it really kind of woke her up. It if I played certain songs, it almost, it almost put her back together, and I’m talking neurologically now. We just know that the music can trigger those neural pathways and all of that sort of thing. But with my grandma, what I found as I was losing her, like, because it’s a long, like, dementia is a long journey, right? It’s over years and every visit you see more loss and I needed a way to express what I was feeling and the grief I was feeling in losing her.
Bev: And so for me, I wrote a, and this is something I can do and it helps me, it’s a part of my self care process, is writing songs to help express and contain those emotions. And in this case, really grief.
Bill: Yeah, absolutely.
Bev: I was gonna sing that for you, the song I wrote for my grandma. Cuz. I just think this is a song I wrote five years before she died.
Bev: This was me processing what I was feeling in the grief. And this is, or anticipatory grief, ambiguous loss, kind of where dementia fits. So it really helped me process in the many talks I give I often will sing this song and it’s like she comes with me so it’s in that sense, right? Like, I remember her each time and am thankful. So I’ll sing you that song. It’s called Pictures in My Heart.
Bill: Bring her along.
[PIANO BEGINS TO PLAY]
Bev: [SINGING] (Verse 1) I walked into your room last night. You were sitting in your chair. You looked as I imagined, with your crown of ivory hair. Couldn’t tell if you knew me, just wanted to be near. Hold the hand and stroke the face of one who is so dear.
(Verse 2) We both have changed times have changes. Years have come and gone. I remember special things. We were special bond. Musty covered manikins, smells of homemade bread. Raspberry picking, making sure the dog was fed.
(Chorus) The pictures in our hearts, will never fade away. The framed with the love we’ve shared, mounted there to stay. Colours, places, sounds all tucked away. We’ll be with each other in these pictures.
(Verse 2) I wonder what you are thinking as you’re living in your chair. Do you remember Christmases? The moments that we shared. Somehow in spite of what I see, I think you kept them to. Souvenirs are tucked inside, inside the real you.
(Chorus) Pictures in our hearts, will never fade away. The frame with the love we shared mounted there to stay. Colours, places, sounds all tucked away. We’ll be with each other in these pictures. We’ll be with each other in these pictures.
Bill: Oh my goodness. I have to take a moment myself here. How moving is that? My goodness. And you’ve got that forever for you. So could we take just a minute now to get your sense about how it is? If I anticipate, for example, that my care recipient may be moving into that territory, what are some of the things I should be doing to get some clues about what music might be useful and worthy of my investment to, to bring to them?
Bev: Yeah I mean, we’ve already talked about the preferential stuff, and so as a family caregiver probably already know that, and if you don’t, those would be good conversations. One of the things we do at Room 217 is provide tools. I mean, I, that’s what I would’ve liked for my dad. The music itself was very powerful, but to have some tools to open up those conversations.
So, for example, one of the tools that we create are called conversation cards, and they are open-ended questions which ask these very things and you can get a really good sense. So, if you can get that then even upon intake, for example, into the next dwelling for your loved one. For example, you can say, my, my loved one loves this music. And that’s very helpful because people can then create playlists, which I’m a big playlist proponent, but I mean, you don’t want the person to only have one playlist either right? Seven songs for seven years could be a long go.
Bev: So, I mean, it’s and as much as preferential music is really touches the heart, people can often intake new kinds of musics too right?
Bev: But that, but we’re talking about meaning, so it’s the preference stuff that whole.
Bill: Absolutely. I’m a facilitator under the auspices of Island Health Authority for what’s called Advanced Care Planning Workshops. And included in that is enabling someone that I’m caregiving for, or if I’m anticipating my own care recipient being a care recipient. What kind of things am I interested in as my life begins to close down and come to and end. So one of the things I have on my list, and I’ve got two pages of it, is classical music of all specific titles, that if it comes to that stage, here’s the list I want you be playing to me. So I think of that as a part of my caregiving responsibilities is to see if I can tease that out of my care recipient before they can’t.
Bev: Yeah, no, I think that’s really helpful Bill. A great idea too on the list being proactive about it. But I think there’s some other really kind of simple strategies, and we teach them in our training things like humming. Coming alongside and humming and that humming just brings a certain degree of human presence and closeness. That’s quite beautiful. And we’ve seen it reduce agitation. Like, for example, if people are just agitated like say bathing or that sort of thing. Just a simple humming will often calm them down. So that list isn’t just for a playlist. It might give you ideas on tunes to, to hum as well, for example.
Bill: Absolutely. Absolutely.
Bev: Yeah. Another really simple strategy, this one is probably, I think this is so profound. It’s so simple people almost miss it and that’s just sharing a significant song. And it’s a bit of a storytelling thing but it’s really like, why is that song insignificant for you? And when you ask that question, it opens up all kinds of possibilities. For deeper relationships, just deeper understanding of why a person maybe prefers that song or whatever. Or it might give you more information about other parts of their life, cause neat thing the song is so connected to to emotional things.
Bill: Yeah! And I think of hearing is what we’re talking about, is a somatic experience that can, in fact, be enhanced by a touch. I mean, to just touch while you’re singing or, I love that idea of the humming, the closeness of the the lips to the others’ ears or whatever.
Bev: Well you know Bill, we’ve developed this approach called the Music Care Approach, and what we mean by that is the intentional use of music by anyone. And not withstanding there are professional practitioners and we acknowledge all of that in our model. But the general approach is that we can all use music to improve health and wellbeing.
Bill: Yeah. Yeah. Yep.
Bev: And so what’s important about that is that as you were saying in terms of the somatic experiences and that sort of thing, then if we can all use it, then we can bring that with us into every care situation. But that is where it’s not a magic pill. With every conversation I have about music care, I wanna say this, it doesn’t necessarily always work the way we think it’s going to.
Bill: True enough.
Bev: Even doing some of the things you and I have talked about and it might not work, and you kinda go, how come it doesn’t work? There’s lots of reasons why it might not work. I think one of the biggest ones is mood. Because our mood can be different in different days and we might just not wanna do that music today for whatever reason. And you have to just be okay with that. Music is dynamic from that standpoint, it’s not like a pill. We talk about music as medicine. There are definitely interventions and all that kind of thing, but it’s still dynamic. People interact with it and their mood interacts with it and their, the somatic aspects of it, if they’re tired or exhausted or have been up vomiting, like all of these things can affect it.
It’s not just quite that simple. And the other thing is, sometimes it can have an adverse effect. We really say that if you can get some, get a little bit of training on how to music, you can just feel a little bit more confident? When it doesn’t work the way you think it will.
Bill: I know, let me finish with this question. Again, I’m looking for household hints. What would be visual or verbal clues that the music you are providing is connecting? What sort of thing can you see.
Bev: I have never been asked that question, but that’s a great question! I would say you’ll know for sure if people are plugging their ears, if they’re walking away, if they’re turning something off. The grimacing but because what happens, and I mean it really, again, it depends. What is happening with the care recipient I, in terms of what they’re actually dealing with. But like, if they’re really enjoying it, they may put their head back and just close their eyes and smile. Or maybe not smile, but just they’re, you can tell they’re breaking, it’s coming into them. They may start to clap.
Bill: I’m thinking of that. Yeah. I saw my mom start tapping her knees or tapping her toes.
Bev: But the crazy thing is, if you sometimes, especially with people who are nonverbal, because the musical pathways, and this is back to the neurobiology, are connected with our singing pathways. They’re two different systems, but they’re connected. But sometimes, the music will trigger those pathways and they’ll start singing when you’re going. How did they do that? Cuz you know, they don’t know don’t know my name anymore, but how did they start singing? Because those neural pathways have been triggered by that, that music that they’re enjoying, right?
[PAUSE A BEAT // MUSIC STARTS]
Bill: That is exactly right. As we heard, music can be an effective communication tool for the care recipient to show how they are still very much alive. Bev’s stories illustrated the intimate and soothing effect a caregiver can bring to both the physical and emotional aspects of the caregiving role, particularly when cognitive impairment is a barrier.
To bring more music into your caregiving role, and to learn more about the music training Bev and Room 217 offers by checking into the Family Caregivers of BC website at familycaregiversbc.ca
Until next time, as part of your caregiving process to improve your health and wellbeing, I hope you carry some melody, rhythm, and emotion into your life.
[MUSIC DEVELOPS // OUTRO]
VOICE-OVER: Thank you for listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel. Produced and sound edited by Organized Sound Productions. We acknowledge the financial support of the Province of British Columbia and the BC Ministry of Health – Patients as Partners Initiative.
If you like what you’re hearing, discover more episodes, and find more caregiving resources at familycaregiversbc.ca. And if you find these episodes helpful, please share them with your family and friends who may find it enlightening to hear these stories.
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