Caregivers Out Loud
Research shows that family caregivers who list self-care as a priority can better provide care, are at lower risk of burnout and becoming ill, and find more joy in their role as a caregiver. Starting with small acts of self-care can create the opportunity to see the benefits. Calling a friend who lifts you up, accepting help, finding five minutes for a cup of tea in silence, or closing your eyes and breathing for 10 breaths are all acts of self-care.
Today we’ll hear Rick’s story, who shares his caregiving experience with both of his parents. Like many caregivers, Rick didn’t expect to be thrown into a caregiving role when he was. He quickly took on the many roles needed to ensure his parents were safe and well-cared for. Caregiving became a full-time job and it was during this time that he started to see his own health and wellness decline. He turned to writing to help him process his experience and feelings and this became a positive and reliant self-care strategy for him. In sharing his caregiving story, we hope you enjoy and feel supported by Rick’s point of voice and maybe even consider your own favourite moments of self-care.
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“I experienced shock. I experienced anger. I experienced frustration. I experienced fear. And of course, as time worn on, I mean there were, there were days where I felt joy, I felt happiness as well. There were days I didn’t know what to feel because that’s just the way it went.”
“I started just writing stories about what was going on; my thoughts, my feelings. Some of those actually became published in the local senior’s newspaper, which I’m grateful for. As it turned out, the published articles not only helped me, they helped others as well.”
“To be a better caregiver, I need to look after myself. I can’t function properly if I can’t keep up the work myself. I’m like a car, you know, I gotta feed myself fuel, and maintenance, you know, be the regular service checks to keep running. Otherwise, I’ll be dead on the side of the road.”
- Walking the Talk of Self-Care: Practical Strategies for Caregivers Webinar
- Caregiver Burnout and Feeling Stuck Learning Video
- Checking In on How You are Feeling Article
- Taking Care of Yourself: Self-Care Strategies for Family and Friend Caregivers Flipbook
- Learn more about FCBC Intensive Journal Writing Program
- What you Need to Know About Power of Attorney
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What makes this podcast, Caregivers Out Loud, so special and impactful, is being able to share the story and journey of other family caregivers.
Today we’ll hear Rick’s story, who shares his caregiving experience with both of his parents. Like many caregivers, Rick didn’t expect to be thrown into a caregiving role when he was. He quickly took on the many roles needed to ensure his parents were safe and well-cared for.
Caregiving became a full-time job and it was during this time that he started to see his own health and wellness decline. He turned to writing to help him process his experience and feelings and this became a positive and reliant self-care strategy for him.
In sharing his caregiving story, we hope you enjoy and feel supported by Rick’s point of view and maybe even consider your own favourite moments of self-care.
So Rick, tell us about what life was like before you became a caregiver.
[00:01:14] We were living a pretty normal life, a fairly comfortable life overall. Mom and dad had been working at the University of Alberta for their entire careers. They had chosen to retire from Edmonton, where we are to Victoria, BC. We never really fought about mom and dad getting old or any prospective caregiving that might’ve come about or come to be needed. It was something that ended up becoming necessary.
[00:01:45] And you had some siblings at home there with you?
[00:01:48] Not completely at home. I’m the middle child. I have two sisters, one older, one younger. The older sister and her family is in Edmonton. My younger sister’s in Calgary, about three hours south, so she was available, but not as available.
[00:02:04] Say what you’d like about when the caregiving responsibilities took on a serious tone for you and the family.
[00:02:14] I remember back to when mom and dad decided to move to Victoria. Before this, I hadn’t even dreamed of them becoming sick or old or frail. They were always very healthy, very strong. Mom ended up having Parkinson’s and Leukemia. Dad had Alzheimer’s disease at the same time.
[00:02:34] You know, didn’t have any concerns really until the day of mom and dad’s move. Mom got us children together and sat us down and announced at that time that she had Parkinson’s disease. Didn’t know anything about it before then. It was really a wake up call for me and my sisters, I believe as well, that things could become more serious.
[00:02:58] They had made up their minds to move and there was no, no stopping them. So they packed up and moved. They ended up living out there on the coast fairly comfortably and fairly well for several years, I’ll say. We kept in touch via letters, via phone call. There were visits as well. So, everything was fine. But that changed.
[00:03:18] We heard one day that mom ended up feeling quite weak and ended up dragging herself to the local hospital. She actually almost fainted. She ended up getting a diagnosis there. Her blood count was quite low or very low in fact and the report was leukemia. Didn’t hear anything about this until the nurse at the Victoria hospital called my younger sister in Calgary, shared that news with her, and then my oldest sister and I heard from our sister at that time.
[00:03:48] Yeah, it’s interesting how that often happens because we can all relate to the need for our independence, getting older. We don’t want to admit to, oh boy, we’re in trouble here. So your mom probably kept quiet about it.
[00:04:01] She’s always been fiercely stubborn. Never one to accept help, especially from her own children. Always wants to do things herself, very driven and I admire her for that. But boy, it became problematic later on.
[00:04:17] Tell us a little bit about what transpired then.
[00:04:19] Mom’s diagnosis — she wasn’t content with that. So she wanted a second medical diagnosis. Her and dad came back to Edmonton, reportedly temporarily to see a second specialist, the diagnosis was of course the same.
[00:04:32] But my sisters and I, we sat mom and dad down at that time and pitched the half-cocked idea that we could take care of them better if they ended up moving back to Edmonton.
[00:04:45] You know, it was a kind of a far-fetched idea, but surprised it actually worked. I think because we came to them as a united front and we expressed our worry and concern, which was something that they couldn’t really argue with.
[00:04:59] Looking back on it and listening to you talk about it, I found that was a very clever approach. That you weren’t saying how weak and feeble they were. You were talking about how concerned you were and how they could help you by moving back to take better care of them. Now, that was brilliant, actually.
[00:05:17] Thank you.
[00:05:18] So then the proximity problem went away, but some other challenges then arose in the actual caregiving responsibility between uh, you and your sibs. Say some words about, as the responsibility began to grow, your reflections on it.
[00:05:37] Initially, when mom and dad came back, they were still fairly well-functioning. So their first home back here was a seniors’ apartment. We moved them in there. They had their own apartment.
[00:05:49] The building had a shared dining room where residents got together and ate their meals. There was an activity room. There was staff on hand, a doctor and RN visited on a regular basis to check on residents, that type of thing. That was their first stop.
[00:06:05] My sisters and I, we had more work to do. The caregiving work began certainly more earnestly. Personally, I not only helped move them repeatedly, as it turned out, I became mom and dad’s banker. I paid their monthly bills for them. I helped manage their investments. I drove them to get from doctor’s appointments. I searched for long term care homes. I did errands for them. I eventually became dad’s joint guardian and alternate trustee as well when he was unable to make those decisions for himself.
[00:06:39] Sure. So in addition to the emotional range of caregiving, now you’ve got an activity range. You become an advocate and a real estate agent and a mover.
[00:06:51] That was actually another, a responsibility I had too! Was to dig ya, find a realtor in Victoria to help sell their condo out there. So that was a challenge working with him from a distance.
[00:07:03] Recall for us, if you will, Rick, what kind of emotional, maybe even spiritual challenges started to arise fairly quickly in this responsibility.
[00:07:15] Caregivers commonly experience a roller coaster of emotions. I experienced shock. I experienced anger. I experienced frustration. I experienced fear. And as, of course, the time wore on, I mean there were, there were days that I felt joy, I felt happiness as well. There were days I didn’t know what to feel because that’s just the way it went.
[00:07:35] Sure, quite the range of emotions in that.
[00:07:40] Absolutely. I mean one day was never the same as another. Like I said, I didn’t know what to feel. I didn’t know what each day would bring.
[00:07:49] As both of Rick’s parents’ health began to steadily decline, Rick found a unique way to look after himself that included writing. Rick always enjoyed writing and even took a writing program to pursue his passion. His published writing centred on caregiving and his personal caregiving journey.
Family Caregivers of BC understands the importance of writing and has embarked on an intensive journal writing program for family caregivers. This new journal workshop process enables caregivers to write personally and reflectively about their stressful and demanding caregiving role. It is more than a diary or typical journal recordings. Private journal reflections are written in small workshop groups, and often between workshop sessions. As with Rick’s writing, the journaling process is proving to be of significant help, aiding caregivers to find emotional balance, spiritual consolation, and even physical stamina for providing the care needed for loved ones and themselves.
So how did Rick decide that writing about this process was going to be useful?
[00:09:04] Let me start by congratulating you and Family Caregivers of BC for launching that journaling program. I think it’s an excellent initiative. I realized, with the amount of work and the amount of responsibilities that I had assumed that I needed some kind of care myself, some kind of self care.
[00:09:22] I chose writing. It was something that I’ve long done and I enjoy. So I started just writing stories about what was going on, my thoughts, my feelings. Some of those actually became published in the local seniors newspaper, which I’m grateful for. As it turned out the published articles not only helped me, they helped others as well, to get out my frustrations and deal with the parental baggage.
[00:09:50] But also I knew that what I was talking about and what I was sharing could also help those prospective new and current caregivers out there as well.
[00:09:57] Sure. And what we’ve done here at Family Caregivers is begin to bring people together by Zoom, primarily across the province, to do some writing and even take the opportunity from time to time to share a bit of their writing with other family caregivers.
[00:10:13] Did you have the opportunity to do that or were you pretty much doing this on your own and then discovered the beauty of getting it published?
[00:10:21] I guess as a freelance writer, I’ve, previously, experienced the value of sharing stories and heard positive feedback. I don’t think I know that a caregiver sharing stories is very a valuable process. It helps, like I say, to get that out and not bottled up inside you. And it also helps other people that are listening because they learn from that process as well.
[00:10:46] Absolutely. And that’s of course, part of the reason we are so happy to have you do this interview is to help people understand the difference between giving advice to another family, caregiver, and simply telling your story, that there’s power in your narrative.
[00:11:03] We have some good support here with Family Caregivers at BC and some specialists with Parkinson’s and with Alzheimer’s who were busy trying to strengthen those connections. And I think one of the best ways to do that is with those narratives that we simply have a story to tell here.
[00:11:21] And it’s not so much about being clever about it as it is being a self caring about it, that I must find a way to keep up my own energy to keep up my own spiritual hopefulness that death is going to occur here, but I must find a way to transit the escorting of my care recipient.
[00:11:42] Did you find that, that it was useful to you as a caregiver to continue to move forward then?
[00:11:48] Definitely. I realized that I was experiencing some things out of the ordinary when I was caregiving for mom and dad. There was stress, there was poor health, there was poor appetite, reduced sleep, insomnia, a number of things that I said were completely out of character.
[00:12:06] And, you know, just putting two and two together and realizing that it was the extra work and the extra stress of looking after mom and dad, everything that was going on there that was affecting me in a negative way.
[00:12:19] Now, I realized, I go, this is normal. I have to do something about this. I have to be a better caregiver. I need to look after myself. I can’t function properly if I can’t keep up the work myself.
[00:12:32] I’m like a car. You know, I gotta feed myself fuel, and maintenance and do the regular service checks to keep running. Otherwise. I’ll be dead on the side of the road.
[00:12:43] As a family caregiver, you may have the inclination to say “No, everything’s fine. I can handle this.” Until you reach that point where you see that’s probably not going to work.
Today’s conversation with Rick shows how for you to truly benefit from, and for the care recipient to benefit from your support, is to make supporting yourself a priority. Rick’s passion for writing became a healing outlet during the care for his parents. Maybe your self-care looks a bit different – going for a walk, gardening, or painting. The main takeaway is to choose an activity that supports your mental and physical well-being- it’s about personalizing it for you!!
To enable you to write personally and reflectively about their stressful and demanding caregiving role, find out more about Family Caregivers of BC’s intensive journal writing workshop at http://www.familycaregiversbc.ca.
As Rick points out, journal writing can be a simple way to support yourself as a caregiver.
Rick[00:13:51] There are many many different ways to look after yourself. I chose writing, which was healthy. It was an easy thing for me to do. And doing something for yourself, it’s common advice. You always hear about the ‘Put your own oxygen mask on first,’ but uh, it’s very true. You cannot do the job and fully benefit a loved one without looking after yourself too.