Caregivers Out Loud
Have you ever said this to a struggling caregiver – “Let me know if there’s anything I can do to help?’ The offering has good intent, but many times people say it because they don’t know how to help, are uncomfortable, or want to be polite.
And although 29 percent of caregivers in BC are in distress, you will still hear caregivers say: ‘I don’t need any help’ or ‘It’s okay, I’m fine’
Today we hear from Jim and how he supported his friend Art and Grace during Grace’s diagnoses and disease. Jim shares how in the process of supporting his friends, and at first it wasn’t with great success, he learned a lot about himself. We talk about the FCBC Circle of Care model and how it worked for Jim and his support group.
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Quotes
I found a friend in my community that had attended a men’s group session early, when the men’s group was a big movement back in the 1990s, he invited me to an introductory session with seven other men. So the eight of us sat around for five sessions and tried to figure out what this whole discussion among men was all about. Jim
In retrospect, it sounds funny but we left them alone for a long time, with a thought that well he’s going through a very special adventure with his wife that’s a very personal journey that they have, let’s not interrupt that, let’s not get in the way and, and in hindsight, that was perhaps you know the strong thing to do, but not the correct thing to do. Jim
I suspect the men in the group probably recognize something in themselves and that you know how difficult it is to ask for help. Bill
I accidentally happened upon that the Family Caregivers of BC arranged a meeting with one of the staff members there for other men’s group members came with me so the five of us showed up at the office and said, Hey, this is what we’re experiencing extreme frustration all around. Do you have any ideas, and boy, it was a revelation. We heard about the Circles of Care concept. Jim
We’re desperate to help, because you’re part of our family, and we would love to contribute in some way and let’s have this agreement. We agree not to do anything that puts us at a disadvantage, or cause us any unnecessary struggle. If you promise to outline what would help. And then we’ll negotiate sometimes we’ll say no. Sometimes if we offer something you can say no. But that’s the agreement. Jim
Yeah, and it’s not unusual for we males to discern the difference between a mental truth, or rational truth, and a heartfelt truth. You know that very different kind of expression. Bill
Resources
- The Embrace of a Caring Circle Article
- Family Dynamics and Caregiving Article
- Communication Tips for Caregivers Article
- Accepting Help is Essential for Caregivers Article
- Online Supports for Family Caregivers Article
- Creating a Gold Medal Support Network Webinar
- Build Your Support Team (by Ontario Caregiver Organization)
- Medical Assistance in Dying, MAID Webinar
Online Caregiving Tools and Apps
- CaringBridge helps you create a free personal website to quickly share updates about your care recipient’s health journey. Share news and updates with everyone at the same time, activate your community and coordinate help, and receive emotional strength and support.
- Lotsa Helping Hands features a free Help Calendar where you can post requests for support. Members of your community can quickly find ways to help, and Lotsa will send reminders and help coordinate logistics automatically so nothing falls through the cracks. Share how things are going, update requests, and receive support and feedback.
- MealTrain is a free interactive online meal calendar with customized calendar dates, times and meal preferences. Invitations can be sent via email and Facebook including reminder emails, online journal updates and an optional donation fund add-on.
- Tyze Connecting Care is an online tool that brings people together around someone receiving care.If you’re helping to care for someone Tyze is a simple way to keep everyone informed and get organized.Send updates to everyone at once from anywhere, keep track of everything in one place, access appointments, store documents and let family and friends know how to help. There may be a cost involved depending on options selected.
- Ability411, they “answer questions and provide practical information about technologies, tools and equipment that increase independence and well-being for BC seniors, and support their families and care teams.”
Connect With Us!
- Family Caregivers of BC Website
- Telephone: (250) 384-0408
- Toll-Free Line Within BC: 1-877-520-3267
- Fax (250) 361-2660
- Email: info@familycaregiversbc.ca
Follow us on Social Media
Thank You
- BC Ministry of Health- Patients as Partners Initiative
- Organized Sound Productions
Transcript
Bill
Think about the times you said this to a struggling caregiver: ‘Let me know if there’s anything I can do to help.’ The offering has good intent, but many times people say it because they don’t know how to help, are uncomfortable, or want to be polite. And although 29 percent of caregivers in BC are in distress, you will still hear caregivers say: ‘I don’t need any help’ or ‘It’s okay, I’m fine’.
Today we hear from Jim and how he supported his friend Art and Grace during Grace’s diagnoses and disease. Jim shares how in the process of supporting his friends, and at first it wasn’t with great success, he learned a lot about himself.
Bill
I’m certainly aware of how having grown up as a North American male in a family where there was a military father present, but sometimes not present. Quite absent that, for me, and I think for you as for many males, our capacity for compassion and effective caregiving doesn’t come all that easy. So tell me a little bit about your own family, then we’ll get started on taking a look at how you entered this caregiving process.
Jim
Well, it is true that I was raised in a military family. My father was a fighter pilot in World War Two and he certainly carried all of those ideas and ethos into our family as well expected me to be fighter pilot material. And later he became an engineer and expected me to follow all those steps, as well. Fortunately, I did have a mother who was I think a model caregiver, and saw her role as being one of taking care of everybody who was less fortunate than she was.
Bill
Yeah, I had the same experience, my mother was a nurse, actually, and so it kind of balanced off my father’s taciturn quiet, you know, I’m gonna teach you how to be a man sort of approach to child rearing. And so, even as I began moving into the arena, and having been ordained as a pastor and was into caregiving it was challenging. I was unfamiliar with the territory of this compassion and empathy stuff, and I think you had an experience, not unlike mine, joining a men’s group that over time as you got married moved to Canada, talk a little bit about that if you would.
Jim
Probably like you I was very confused about how to find myself, who I was. I would either alternate between being very quiet, or sliding into rage, sometimes at the frustration of not finding us. But once I got married, of course marriage will test you and your mate is your mirror. I learned that there’s a whole lot of questions that were on my mind, I just didn’t know how to voice them. And eventually I found a friend in my community that had attended a men’s group session early, when the men’s group was a big movement back in the 1990s, he invited me to an introductory session with seven other men. So the eight of us sat around for five sessions and tried to figure out what this whole discussion among men was all about.
Bill
Yeah, I participated in a couple of those groups and went through that experience of being with some of the guys who, at least had the courage to come together and say you know, there’s some things we need to learn how to talk about even just with each other. As you moved into that group, then the caregiving issue arose, I think it was because of another member in the group, is that not the case?
Jim
Yes. About four years ago, one of our members, his wife was diagnosed with cancer, a certain type of cancer that allowed some treatments so they went through a treatment phase of a couple of years where hopes were high and hopes were dashed and our role as the other members of the group were to provide as much emotional care as we could. It was pretty challenging to do that.
Bill
Sure. And, as I recall. You did sort of the manly thing for a while with this fellow, say some words about what you were doing to look after him, even in this up and down transition period with his wife.
Jim
In retrospect, it sounds funny but we left them alone for a long time, with a thought that well he’s going through a very special adventure with his wife that’s a very personal journey that they have, let’s not interrupt that, let’s not get in the way and, and in hindsight, that was perhaps you know the strong thing to do, but not the correct thing to do. It was a tough time for him because it was a very gradual descent into this caregiving role for him, his wife Grace, took care of many things around the house and the cooking and and shopping and things like that that she continued to do for a long time until she just didn’t have the energy to do that, and he gradually assumed all of these roles, Chief bottle washer he called himself. Everything else that he gradually went into a depth. That was, I guess a point of extreme frustration for him.
Bill
I take it there weren’t any children there so it was just he and his wife, correct?
Jim
No children he did have family but they’re all back east, at the time and same for Grace as well.
Bill
So, then, you were doing what you thought was the proper thing to do as a men’s group and supporting him. What was going on early?
Jim
Well we did think that we’ll do the Canadian thing and giving them food so we would do casseroles. And my wife in particular wanted to contribute so she did casseroles and the other wives did too and that was kind of the limit of what we had at the time but we could see that Art was failing. I guess in his energy and his response he was just getting deeper and deeper into quagmire.
Bill
And he eventually spoke about that did he not?
Jim
He did you know we eventually said we would love to do more for you what do you do this is the 50th time we’ve asked this, what can we do to help and he pretty much screamed you know I don’t need any help. And then he, and he burst into tears, with a realization that he didn’t. He was lost, he didn’t know what he needed, or, or what to ask for.
Bill
Yeah and I suspect the men in the group probably recognize something in themselves and that you know how difficult it is to ask for help.
Jim
It is, but I have to say you know none of us really had ever been in that situation where a mate was dying. So it was, it was hard to find that empathy for him, although we cared deeply for him we just couldn’t really feel what he was feeling at that time.
Bill
And yet you ventured forth as a group, you, you did some exploration within the group about how can we proceed more effectively here.
Jim
Well, that was our, our ongoing question, we were confused and frustrated as well, but I accidentally happened upon that the Family Caregivers of BC arranged a meeting with one of the staff members there for other men’s group members came with me so the five of us showed up at the office and said, Hey, this is what we’re experiencing extreme frustration all around. Do you have any ideas, and boy, it was a revelation. We heard about the, the Circles of Care concept, and we heard about some tools that might be available on this Lots of Helping Hands, it’s kind of a software tool that allows many people to coordinate their gifts, in a way, so we don’t end up with casseroles and nothing but.
Bill
Yeah, and yet still provided some structure some organization so how to go about this beyond casseroles right?
Jim
Exactly, to kind of spread the workload. You know we walked out of, out of the Family Caregivers office with a plan, and the plan was to talk with Art, and I was given the task of doing that, sitting down with him and offering him an agreement, and the agreement was something like, we know that you’re not asking for help because you don’t want to impose on us. That’s how we would feel we’re desperate to help, because you’re part of our family, and we would love to contribute in some way and let’s have this agreement. We agree not to do anything that puts us at a disadvantage, or cause us any unnecessary struggle. If you promise to outline what would help. And then we’ll negotiate sometimes we’ll say no. Sometimes if we offer something you can say no. But that’s the agreement. What do you say?
Bill
Yeah, so you guys were struggling to make this agreement. I suspect he felt some pressure to in having to open up a little bit and that meant this vulnerability perhaps?
Jim
Yeah, very much saw, as we all did. Vulnerability is a hard thing to wrap your mind around but I think when we express that this way, you know, we, your friends will feel better if we could do something. And he wanted to help us feel better. So, he could ask for help and not feel selfish, or guilty or embarrassed.
Bill
So you began doing some different things then because one of his requests was just for a bit of respite, as I recall, I just wanted some time off from time to time?
Jim
Absolutely so as he gradually moved into the full caregiving mode. He gave up on himself he didn’t have any time for himself for his own even time off it’s 24/7. They would wake up in the middle of night and he would be there with her reading to her and caring for for Grace. So we divided the group up into two there are some local, we were the local family and friends but we also connected with their Art and Grace’s family back east, and they wanted to participate as well. So we divided the workload into things that had to be done local like giving food and things that could be done remotely like sharing stories family stories and photographs, they had photographs from decades ago, and just offering any type of emotional help to both Grace and to Art as well. And once we organize this in a way that everybody could participate, it relieved our workload, completely, but it also allowed us to connect with their family back east and we became friends, electronically so it was a real community of care, the circle of care.
Bill
Yeah sure that’s always such a lovely revelation that you commit yourself to this fairly difficult task that’s got a spiritual and physical and emotional content, and suddenly payback starts something wonderful happens in that process like reaching out to Art’s friends and discovering what they could do.
Jim
Exactly.
Bill
And then as you proceeded along and began to do some things that were helpful to Art. Turns out that wasn’t the end of the tasks you faced that, that there were some other difficulties that arose.
Jim
Yeah, well, eventually, about two years after the first diagnosis. It came as the realization that the cures that they were trying were not working. So, Grace faced this very difficult decision. Is she going to slowly slide into more painful, and more demanding, or if there’s something that that she can do, and she’s elected to follow the MAID approach that’s the medical assistance and dying. She was pretty adamant. And she should have strong willed person to begin with but pretty adamant that two things I don’t want to go through the pain she would say but I don’t want to put everybody else through the delayed pain as well so you know it all made sense to her. Unfortunately, Art, didn’t agree.
Bill
And I can remember even if in my own mother’s case constantly saying, I don’t want to be a bother. She knew she was entering this phase and wanted to make it easy on me and our family. Well, of course creates that complication like with Art so what happened.
Jim
Many of us did attend her final celebration on the day that she died, and we’re there with Art, as the medical professionals. Took Grace away and tried to offer as much care as we could at the time. Without realizing that Art had suddenly fallen into this chasm of grief. And that grief stuck with him for well, we eventually know a year and a half, almost two years of this grief and during that time we we kept trying to do the same things that we were doing before you know the meals. That type of caregiving, and yet he could not relate to us exactly what he was going through because none of us had been in grief that the level of grief anyway before.
Bill
Yeah. And so, the lessons still were to arrive here in this process, sort of, having to do of course with the reality that maybe unspoken but your presence, just being present with Art may have had some ameliorative effect but the fact is that the challenge was not done. And he eventually left the group if I’m not mistaken.
Jim
Yeah, and that’s so much leaving the group he just found another group that he could relate to and that was a local bereavement group with the same principles that we had. Speak your heart, tell exactly what’s going on for you, and he temporarily found more solace in that group until they did, did recover after about a year and a half and are still in touch today.
Bill
He’s moved on with his life in a very positive way since then as I recall, Jim.
Jim
Correct.
Bill
So let’s talk a little bit about that as you guys reflected on this experience to say a word or two about what you have learned as you entered this process. And it didn’t come out as perfectly as you would have liked it to but there’s been learnings in there.
Jim
Well, that’s learnings about what it means to be a man. First of all boys that that’s a challenge as you as you know, with your experience, all of those questions as a child, and young adult and being married and being a father, all of those questions just never go away. They’re just never spoken, because we don’t have the words and I think that’s the main thing that I found is being with other men with the agreement of, they will listen as long as I speak the truth that allowed me to experiment and find the words that did reflect what I was going through.
Bill
Yeah, and it’s not unusual for we males to discern the difference between a mental truth, or rational truth, and a heartfelt truth. You know that very different kind of expression. I mean I’m so appreciative of you telling this story Jim because so many men struggle with this finding a way through caring for a loved one, or even being cared for, it is difficult, and having spoken so wonderfully as you have with me here today, what reflections would you want to pass on to other men who may be listening or other caregivers, generally speaking, from your own experience with Art and Grace?
Jim
From the men point of view and I’ll ask you, Bill about your experience, it seems to be there has to be a certain time of life, where those questions rise to the top, and are causing problems. I guess we used to call it the midlife crisis and was all resolved with a red sports car. Is it in your experience that that men reached a certain depth?
Bill
Well, I think what happens is that we move along with what we know best at the time, and we’re generally problem solvers, you know, as long as we have a toolkit and a problem to solve. We’ll dig in. But as soon as the problem is not defined as something that the toolkits gonna help with. Then we experience this, what I will call a blockage. You know that suddenly now I need to find a different way to communicate my love, and to receive love of others. Your story illustrates wonderfully how maybe that starts with just some other guys who are trying to work through this, which I think was part of your experience.
Jim
One thing that we did do as the men’s group began. We went through a number of efforts to build trust among the members. One thing we said we promised that whatever we said in the group stays within the group, we don’t even tell our wives, what we’re doing and what other people are saying that confidentiality was really important to be able to open up and it didn’t happen suddenly it happened over years to open up deeply.
Bill
Jim’s candid and open conversation reveals his valuable learnings about entry into the intricate skills of caregiving. It requires a compassionate give-and-take communication with a care recipient. Jim, his wife, and his men’s group friends undertook a caregiving mission that required more than just wanting to help in a socially appropriate way. It was a challenge complicated by the care recipient struggling to identify and articulate his own needs, beyond weekend casseroles.
You heard the patient effort of Jim and his care recipient in building a Circle of Care – a psychosocial intervention model used at Family Caregivers of BC. Creating a Circle of Care helps caregivers increase informal respite options by having scheduled informal support from friends, extended family, spiritual community, and neighbours. Your Circle of Care can help decrease social isolation and prevent caregiver distress.
To find out how you can create a Circle of Care, call our BC Caregiver Support Line at 1-877-520-3267.
As a caregiver, Jim had to get personally creative in order to communicate better with Art. They both learned that trustful communication is vital for the caregiver, and also for the people that want to support them.
Jim
We were caring for a caregiver, so that relationship is not unlike a direct caregiver, somebody who’s in trouble. That trust needs to be there to get to the agreement that they’re going to ask for what they need and we promise to only give our gifts that do not impede us. So that agreement I think is vital to the caregiving role, and it depends on trust.