Caregivers Out Loud
Engaging with creativity is a form of self-care that can benefit both a caregiver and a care recipient in many ways. In 2015, psychologist and art therapist Dr. Cathy Malchiodi cited multiple studies confirming that being creative can increase positive emotions, lessen depressive symptoms, reduce stress, decrease anxiety, and even improve immune system functioning. A 2016 study in The Journal of Positive Psychology supported these earlier findings, concluding that spending time on creative goals during a day is associated with higher activated positive affect (PA) on that day. Positive affect is the extent to which people experience positive moods, such as joy, happiness, and optimism. Higher positive effects lower stress and expand our perspective so that we notice more possibilities in our lives.
In today’s episode, Bill chats with Faye Melling, a caregiver for her adult daughter. Faye talks about how being creative has helped her deal with some of the ups and downs in her caregiving journey. She also shares how her daughter is using artistic expression as a way to deal with some of the challenges she’s experiencing due to her condition.
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“As a caregiver of an older person, it won’t be long, I can put up with this for whatever it is, year or two years or five years and I know it’s hard, but I see an end to it. I don’t see an end to it. I need to start thinking differently and plan to have other people in the care circle so that they can help out or I can hire somebody out to be able to help for the next stages.”
“I’ve come to appreciate living simpler. And just focusing on what the most important thing is at any given day or any given moment. It’s surprising learning to me because I always feel like you need more, you need to do more things, you need to go more places, you have to have more friends. You have to… it’s always about more, but I am surprised at how much I’ve learned to appreciate the less.”
- Article on outcomes of art therapy and colouring for caregivers of cancer patients: https://www.sciencedirect.com/science/article/pii/S1462388919301152
- Article on how creativity is an advantage for self-care: https://nyctherapy.com/therapists-nyc-blog/creativity-is-your-secret-advantage-for-mental-health-and-well-being/
- Study on benefits of creative arts leisure program to caregivers: https://journals.sagepub.com/doi/full/10.1177/2055102915581563
- Study on the connection between heart, healing, and public health with links to psychologist and art therapist Dr. Cathy Malchiodi: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2804629/
- “Caregiver Well-Being” in the Resource Centre at https://www.familycaregiversbc.ca/caregiver-learning-center/read-resources
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[00:00:09] Engaging one’s creativity is a valuable self-care tool and worth the time to pursue. Creativity can take many forms such as music, writing, gardening, photography, painting or other endeavours. Creativity can help focus the mind, and has even been compared to meditation due to its calming effects on the brain and body. When being creative, the brain releases dopamine, a natural antidepressant. Although experts aren’t sure exactly how it works, creativity can boost your immune system. In today’s episode, we discover how art can be a powerful tool as an outlet, both for a caregiver and the care recipient.
[00:00:54] Meet Faye Melling, who is a caregiver for her daughter. Both Faye and her daughter have artistic interests, and they use art as a therapeutic tool for dealing with some of the difficulties that can arise from caregiving, both for the caregiver and for the care recipient. Faye, please introduce yourself and tell us, what has been your caregiving experience?
[00:01:20] I’m originally from Trois Rivieres, Quebec. I’ve been living on the west coast here in Victoria for over 30 years now. You know, when you think of caregiver, you always think of elders, maybe spouses who are older years. But in my case, I’m caregiving for my adult daughter.
[00:01:39] I have two kids, so she is 24 and my son is 21. Even though my husband and I divorced, he remains an important part of my life as well. He and I are both consulting professionals. He’s a geologist and travels quite a bit. And, I’m an IT consultant. I do most of my consulting for government. But I’ve only really worked part-time for the most part since becoming a parent. So, we have kind of an interesting, atypical, family situation where we’re not always home, uh, one or the other.
[00:02:19] Say some words then, would you please, about how the caregiving work began to come into your consciousness?
[00:02:26] My daughter was born with a neurological condition that is in a family of cerebellar ataxias, and ataxia is basically just a Greek word for a lack of balance and coordination. And then, they’ve just tacked this descriptive word onto the issue that she has. But her situation isn’t common to anybody else. She doesn’t meet any of the existing genetic markers that other folks have. So we knew that there was something up early on, but they couldn’t diagnose her. And it wasn’t terribly serious until she was in kindergarten. And she started having episodes every afternoon. You know, when you’re only there for two and a half hours and you get called to go pick up your child almost every day in the last couple of months of school, we knew this was going to be a big issue for her education. And luckily we managed to get a diagnosis just before she started first grade and they were able to prescribe medication for her that really took care of 90% of her episodes, which was fantastic.
[00:03:42] Made a huge difference to her education and things just plateaued for a while. She had some differences, but she still participated in gymnastics and dance and we tried, specifically, to get her involved in a number of physical activities.
[00:03:59] When my daughter turned eleven, she had three major episodes that lasted ten days to 14 days. And this is in comparison to having episodes that have only lasted for maybe an hour to three hours previously. And they were completely debilitating and the best that we can figure this had a permanent effect on her balance and coordination and she was no longer able to walk independently. So that was a big life change that came to our awareness and we had to get a lot of different supports for her at that time.
[00:04:43] And then more recently, things have progressed a bit more. Where she used to be able to work part-time and now she can’t manage that without having episodes.
[00:04:54] So much more of your time, and attention, uh, to look after her and seek out care for her, which is very typical of a caregiver, because it’s not just about the personal thing. And now you have to become an advocate. You have to find other resources and begins to consume your life in some significant ways.
[00:05:15] Various professionals, and both in terms of counselling and mental health, as well as neurologists and ophthalmologists and physiotherapists. So there is quite a wide range of supports and therapies that she has on a weekly basis.
[00:05:32] Sure, and things that you have to escort her to and from.
[00:05:37] There is one difference between the kind of caregiving that a parent does as compared to a caregiver who’s looking after a sibling or a parent. Can you say a word about that?
[00:05:47] Well, I think it’s a worry factor because I don’t think a lot of children who are looking after their parents feel like their parents are going to outlive them. And if you’re the sole caregiver or primary caregiver for someone for many years, they’re used to you. You know their routine. You don’t even have to talk about it. I know exactly what needs to happen post-shower. I have to have certain things ready in a certain order otherwise, she may fall into a neurological episode. Someone else would have to learn all of those things. And we tend to carry a certain amount of that, thinking, well, as a caregiver of an older person, it won’t be long. I can put up with this for whatever it is, a year or two years or five years and I know it’s hard, but I see an end to it. And I don’t see an end to it. I need to start thinking differently and plan to have other people in the care circle so that they can help out, or I can hire somebody out to be able to help for the next stages, and plan financially for the next stages as well. So I’m not there yet. Others have gone before me and have done a better job. So I’m hoping to learn from them.
[00:07:13] So, at Family Caregivers of BC, we refer often to what we call Circles of Care, meaning what supports, in addition to your husband, are there available in this process for you – family, friends, neighbours, are there other supports?
[00:07:31] I would definitely say that my ex-husband is my biggest support whether it’s just to call up and say what’s happening and hash out, maybe, some next steps or just even listen to my gripes.
[00:07:47] And on occasion, when it’s too much, especially during certain times when she’s been downcast and you get into a situation when it’s just two of you, where someone is in need and someone is caregiving, especially mother-daughter, occasionally, that tension can build up where she’s frustrated and she has no other way to express it other than to kinda come at me or to be just in a bad mood because sometimes things really suck.
[00:08:18] If there’ve been a few days of that in a row and I’m just needing to get some space, it’s really great that she can go to his home and he’s only a couple of kilometres away, and help out from time to time as well.
[00:08:32] And it crosses all those boundaries. I mean, it’s physically exhausting, emotionally draining and spiritually challenging. I mean, you’re trying to figure out a way through this without any clear path.
[00:08:45] I should bring up another group that has helped out with that path. And there’s a group of mothers of children with different abilities that used to have quite a regular coffee hour prior to the pandemic. Even just to sit around a table and share my coffee or tea with a bunch of people who, quite frankly, have far more challenging situations with most of their kids than I do, there’s a real comradery there and building each other up and understanding that sometimes just having someone hear you who gets it is such a huge benefit. But are also a really terrific resource group because they know all the various doctors in town and all the various support systems and one person in particular who has led the group has been an incredible resource for all of us. That’s part of my usual circle of care that I’ve been missing greatly since COVID and we have not been able to get together.
[00:09:52] So you’re still without that resource.
[00:09:56] You mentioned you and your husband were both professional consultants, really, you in information technology and he in geology. But what I’d like to ask you about is that artistic bent that you have, has it provided some capacity for you to move through some of this caregiving stress and perhaps some of the down times?
[00:10:19] Absolutely. I think that I’ve always been involved in a number of different creative things uh, not just art, but in past years, dance and yoga and other things that allow me to just lose myself in the activity for a while. And art can definitely be that way and photography to an extent. So the photography thing is fairly new to me, I’ve only been doing it for year, trying to capture some sunrises and sunsets, that started as a little bit of a COVID project. But it was my way of finding half an hour of creativity where I didn’t have to pull out paints and prep canvas and make sure the lighting was right and make sure that everything was quiet because I would leave the home for anywhere from 15 minutes to 45 minutes and just capture a few shots of nature and uh, definitely, the added element of walking to these sites and, being at the beach or looking at the mountains or looking over the sea, it’s really been a grounding experience on a daily basis. I thought I would only do it for a little while and here I am a year in, so I’m not exactly sure if or when that’s going to end, but it’s definitely been replenishing to the soul.
[00:11:42] Sure. And a bit of respite, you could step outside of yourself as it were, and outside of the situation for a little while and engage that creativity. Tell me a little bit about your care recipient and my understanding is that she also has a bit of an artistic bent that she’s has a creativity of her own.
[00:12:03] She does. She loves art and uh, you know, she had been working, part-time doing various things at a movie theatre and she’s done some acting and she’s had these small roles as a background actor on a few movies and television.
[00:12:21] Oh, wow. Wow.
[00:12:21] And I understand the performance side of thing too, from dance and some of my experience. So those are things that we’ve been able to share. And when she, you know, started, not being able to work at a place on contract consistently, even if she had a short shift for three hours, sometimes she would become ataxic in the middle of her shift.
[00:12:43] We started looking at things that she could do that were centred around the home and whenever she would feel good and she turned to creativity and started trying a lot of different things. And fortunately, I’m a bit of a packrat and have tried a lot of different artistic endeavours myself. So I had a lot of materials here that I just would keep feeding her. And she’s since grown her own interest in lots of different things. I think to call her prolific is not an incorrect statement. She likes to produce quite a lot of things and a variety of things and has started going to a summer market in Victoria to sell some of her things. And it’s been really rewarding because she gets lots of good feedback from the people that she meets as well. And so it’s been interesting to go from producing art myself to, sort of, coaching her along. I call myself her art jockey because, you know, in order to get to a market, well, you’ve got to have a tent and tables and chairs. There’s a lot of physical things that are involved in that. So I’m learning a lot along the way.
[00:13:54] Interesting you’d say that. Even as you talked about it, I think of it as a partnership between the two of you, you know?
[00:13:59] It feels like that. Nothing that I ever really expected would happen in our lives, but there’ve been a lot of joyful moments through that and I already see great leaps in how she’s been developing, which I quite frankly hadn’t really expected. She has a lot of problems with coordination. Yet she’s found things to do that are really colourful and expressive that are absolutely beautiful. So it’s been a really nice thing to share.
[00:14:26] Wow. That’s cool. And the caregiving – what I call a mission really – as you have experienced, starts off in one way and continues to grow and, and even in your case to develop and new paths show up all the time, so that the two of you are having to transit this and get through some highs and through some lows. So, my sense is that partnership helps that for both of you?
[00:14:52] I’m stuck on that a little bit because I mean, there definitely are highs. She loves concerts. She has a lot of favourite bands and we have made many trips to Vancouver and some to Seattle and so that she can see some of her favourite bands. Those are definitely highs for her. And to see her in such a place of excitement has been really wonderful. But in general, the highs that I think of are often in hindsight. Like, if sometimes you don’t realise how good things are until suddenly they’re not. And you’re looking back at that time and thinking, oh, that was really good.
[00:15:32] Now is really awful. So one of the things that we do to help navigate those awful times is to think about the good times and in the very worst times that… she had a very difficult period that started about two years ago where every day was really horrible for, well, I don’t know, months, it just seemed like she’s still not back to the place that she was two years ago. But about six months of it was really, truly terrible and she started Gratefulness Journal.
[00:16:06] It was just so helpful for her to think of three things that she was going to look forward to every day and three things that she was grateful for in her life. And it got us both thinking in that way. She doesn’t always do it anymore, but it got her through a really, really difficult time. And it was a great lesson for me.
[00:16:32] By hearing caregivers’ stories, such as Faye’s, you can get a sense of how to move through your own experience as a caregiver. For Faye, art and most recently photography, has given her respite from the lows she’s felt as a caregiver. Being in the moment, as she sets up a shot, and taking in the beautiful scenery she’s capturing, has helped her reap the benefit in a moment of self-care.
[00:16:59] For more resources to discover what self-care can look like for you, please visit the Caregiver Learning Centre on our website at familycaregiversBC.ca. Or get support to discover other self-care options by calling the BC Caregiver Support Line at 1-877-520-3267.
[00:17:24] Faye, what would you say about your journey that you have found the most useful?
[00:17:30] Overall, I’ve found that slowing down has been very helpful. I say that both, with respect, I’ve not worked for, on contract, in four years now. And it’s been really difficult leaving that behind because, in a sense, a lot of that work was distraction. Like, I could think of nothing else when not… when I’m at work, working full-time on a project that has a big deadline or a series of deadlines. But I’ve come to appreciate living simpler and just focusing on what the most important thing is in any given day or any given moment.
[00:18:13] It’s been a surprising learning to me because um, you always feel like you need more, you need to do more things, you need to go more places, you have to have more friends, you have to, it’s always about more. But I am surprised at how much I’ve learned to appreciate the less and sometimes just saying, well, she’s not feeling great and listening to a show like The Office is a comfort to her because she’s seen it so many times, she knows what’s going to happen. And just being on the couch with her and watching The Office is just what’s needed. And I can just fall into that with her and appreciate it. You know, it’s been, yeah, a really good learning experience to just slow down and appreciate the good in every moment.