Episode 3: Why Speaking Up For Your Needs Matters

Caregivers Out Loud

In a healthy relationship, the needs of both people are important – it’s a two-way street. Good communication is the key to making sure everyone’s needs are met. Whether it is between you and a spouse, or with your friends, successful relationships are all about communication. In today’s episode, we share how for caregivers, relationships with others can be more complex than usual. It can be hard to find ways to speak up for your own needs. If you are the primary caregiver, recognizing your own need for support might be difficult – particularly if the care receiver is uncomfortable with the idea – but still, you need to make these choices for yourself.

Highlights

Relationships are complex, so resentment, sadness, and guilt can still exist in any happy relationship; which is all very normal when you are a caregiver.
It’s not uncommon with men to be uncomfortable with diagnosis and want to keep that a secret.
The whole caregiving relationship depends on the caregiver being well.
There is joy in caregiving, but there’s also the sadness.
Caregivers focus a lot on the practical aspects, but what’s the hardest part is doing the emotional work or anticipatory grief.
Through talking about the caregiver’s feelings and needs as well as the care recipient, helps the recipient see the importance of letting people help.
8:15 Strategies for caring for yourself as a caregiver.
Caregivers can still be responsible for their own experience while balancing the need for others.
Choosing freely to be a friend caregiver.
The learning curve of being a caregiver is like being in medical school.
11:59 How a friendship can change when a friend becomes a caregiver.
Caregivers don’t know what to do and how to ask for help because it’s all so new.
Community shows that we can do things better together than individually and alone.
Real challenge is finding out what the caregiver friend needs and then matching what friends are willing to do and give.
21:04 How the trust relationship by telling the truth restores the sense of equity or equality before being a caregiver.
22:57 Lots of Helping Hands to have an organized approach to caregiving by using an online care calendar.
Opening up a conversation with anybody can be helpful because people need to give as much as they need to receive.

Quotes

“Relationships are complex, so resentment, sadness, and guilt can still exist in any happy relationship; which is all very normal when you are a caregiver. It takes work to overcome the negatives by seeking help, communicating with your loved one, and having the self-awareness to put it all into perspective.” – Jodie

“I have to take care of myself. Because if I’m not taking care of myself, who’s going to take care of you?” – Nancy to her husband Ted

“You are free to ask for anything. But you must also ask for everything that you need. And we agree to only give what we’re capable of giving.” – Jim’s principle to share the truth

“The agreement is you tell us the truth about what you need. We will tell you the truth about what we can deliver. Once we got to that point, everybody relaxed, and we got back into the normal rapport because we have a model that we can talk to.” – Jim

“I felt a little uncomfortable in intervening in what could have been seen as a family affair, a family issue. But I overcame that because I realized the benefit of us all working together, rather than working independently and duplicating some efforts and leaving gaps and others.” – Jim

Links Mentioned In the Episode

Lotsa Helping Hands – online care calendar

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Transcript

Jim

Connectedness is what it’s all about. I think that’s what is essential to being human. Going through a life experience like this is a very human experience. And it’s sad and unforgivable that we, as a society, encounter others who are going through this life change and start to remove ourselves. Step away from this? It just boggles my mind, on the other side of it. At the time that seemed like I didn’t know what to do. Totally lost on how to help my friend and my caregiver friend was lost on how to ask for help.

Intro

You’re listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Jodie McDonald.

Jodie

Nancy

My name is Nancy, and I am a caregiver to my husband who has Parkinson’s disease. I retired in 2013. And prior to retiring, he got quite ill. But the week that he got, this was a couple years later, the week he got the all-clear from the cancer clinic, he got the diagnosis of Parkinson’s. So that week was a little bit of a roller coaster.

Jodie

And so I imagine that then his symptoms and how symptomatic he is for Parkinson’s was a lot different than how it is now.

Nancy

It’s worse now. Definitely. But what I did when we first found out about the diagnosis, I got all kinds of books and I just read them about Parkinson’s. He was willing to have me read things to him. But he was mostly just interested in the gist of things to get an overview. He and I were invited to go to a support group for caregivers and their partners, who were afflicted with Parkinson’s or dealing with Parkinson’s. And we did that. And it was so scary to see the different stages that people were at. It was very overwhelming. And so we just drew back.

Jodie

Nancy has a loving and open communication with her husband. But relationships are complex, so resentment, sadness, and guilt can still exist in any happy relationship; which is all very normal when you are a caregiver. It takes work to overcome the negatives by seeking help, communicating with your loved one, and having the self-awareness to put it all into perspective.

Nancy

When we first found out about this, I said, Ted, we have to talk about it. We cannot hide behind this, this cannot be a secret. We have to talk about it because people will recognize that things aren’t the same and they won’t understand. And we can’t hide about this, we need to just talk it about and let them know, so that they can adjust and deal with it. He was the one who had to bring it up with his kids and his family. And he has to be the one to tell other people.

Jodie

What you’re saying is really important because I’ve spoken to a number of other caregivers whose partners and again, this would be in the case of a woman caring for their male partner but it but could be I guess a different scenario but it’s not uncommon for men to be uncomfortable with the diagnosis that they get and wish to keep that a secret. And maybe, you know also sometimes in the case of dementia because people feel so embarrassed and have shame maybe around some of the differences if that’s going to imply. And so I think it’s such a difficult position for a caregiver to be in because it limits the caregiver’s ability now to…

Nancy

To talk.

Jodie

Yes, to talk. Exactly.

Nancy

To talk about what’s really going on. I was very clear with Ted that we have to talk about this because I will need to be talking to our friends. We cannot hide this. This is our reality now.

Jodie

You know, I’ve heard caregivers say things like oh, well, he got into this wonderful day program, but he doesn’t want to go. Or, you know, we have these respite hours, but he doesn’t want to go and I think you know, especially for caregivers who really need that freedom or that break or that space, it’s sort of like when was the last time anybody got what they wanted?

Nancy

(laughing) Exactly!

Jodie

We’re kind of beyond that, you know, who’s getting what they want? And that maybe sometimes as a caregiver, it’s okay for you to get what you want. Even if it’s not what the other person wants because the whole thing, the whole caregiving relationship depends on the caregiver being well.

Nancy

Well that’s what I keep saying to him. I said, “Honey, this is, I have to take care of myself. Because if I’m not taking care of myself, who’s going to take care of you?”

It’s hard. It’s hard because when you’re watching somebody that you love very, very, very much, slowly losing their abilities. It’s like the grieving happens everyday. As you recognize that they’re no longer be able to do x, y or z. Maybe just get dressed, get their sweater on themselves. They now need help getting their sweater on or something. Or they can’t open a jar in the kitchen. And it’s like, okay, this is something I need to step up and do, which I’ve never had to do before. And it’s not easy for him either. Because he’s recognizing that he’s losing abilities. There’s joy in caregiving, but also there’s the sadness and I don’t know that you can put them in the same sentence, but they belong together. Grieving, slowly grieving that sense of loss of what we’ve had and what we won’t be able to do. Now we’re making adjustments and trying to do other things, and we are doing other things. But letting go of some of our dreams is kind of hard.

Jodie

Yeah, what you’re speaking to is a lot of really important emotional work. And we focus a lot as caregivers on the practical. How am I gonna get this done and how am I gonna, you know this resource and making sure that that happens and the finances and the planning, but sometimes what’s the hardest part is to do that work of grieving. And the word for it is anticipatory grief.

Nancy

That’s right.

Jodie

Facing the reality of their situation was overwhelming for Nancy and Ted. Through talking about her own feelings and needs as well as his, Nancy helped Ted see the importance of letting people help, whether that’s a support group or other family members. In the end, Nancy learned that as a caregiver you have to care for yourself too.

Nancy

Be kind to yourself and give yourself a break. Don’t be hard on yourself. As far as being critical, I mean, we’re all our own worst enemies as far as being critical, but to embrace the new challenges and find your own source of fulfillment. If it’s outside of the caregiving role, you still need to feed yourself so that you can go back into that caregiving role. As much as you might not want to be there, but I needed to find other ways to nourish myself. So that I could nourish us. When somebody makes a suggestion. Sometimes it’s so easy just to say, well, that won’t work. But really I would challenge a caregiver to stop that automatic reaction. No, that won’t work. And look at ways in which it might work. Because it could really, potentially improve their lives. If they tried it. And it’s essential that each caregiver take responsibility for themselves as far as what they’re doing. And that’s why I found my friends I asked different friends that they would help hold me accountable.

Jodie

So that idea that you ultimately even though there are so many things that are happening that are outside of your control, your own experience is something you still have some say over and some influence over. And that you can still be responsible to your own experience, but I think that you’re right we sometimes do need people outside of ourselves, trusted people, people who can be compassionate with us to point that out. You know, to hold up a mirror to us and say this is what I’m noticing.

Nancy

Exactly. Like I said It’s bittersweet. Being in this role.

Jodie

Accepting the role of a caregiver isn’t always easy. Sometimes people feel pressure to take on the caregiving role because of family. But what about when you choose freely to be a caregiver, not to family, but as a friend? Jim’s unique situation placed him in this very scenario.

Jim

I’m part of a friends group in Victoria, here a group of men, and one of our members is in the elderly set and his wife contracted a type of cancer that was very slow ongoing, on setting cancer. So he and his wife slowly entered this era of newness, like they had no idea what to expect. And we as friends had no idea what to expect or how to help them through this whole thing and very, very slow.

Jodie

Yeah, so you witnessed your friend make the transition from person, husband, friend, to caregiver.

Jim

To caregiver and the way he described it was like I’m suddenly in medical school, I have to know all these bits and pieces to be a support and advocate for my wife. But talking with the doctors and the nurses, there’s all these new terms and new concepts. Had to get to get to know our bodies in a way that we don’t usually on a day to day. So he was struggling with going to university again.

Jodie

Right, the learning curve, which we don’t always talk about caregivers. So how did it change your relationship with your friends for him to become a caregiver?

Jim

Changed for the better, ultimately, but there’s some challenges along the way. Our friendship as with all the people in our group were pretty, the power levels were pretty even. We are who we are and we share our trust with each other, but also a level of levity and bring each other up and just having fun. That’s what friendships are all about. And when my friend entered this, this new era of his life, I think he felt like the power had shifted, like he felt power-less, and everybody else, we felt we have more power and nobody understood what was going on. He felt vulnerable. We tried to dance around that without speaking to it because we didn’t have the words. We didn’t have the language at that time. Not being able to talk about it was the biggest impediment so there’s some distance to begin with, definitely.

Jodie

Did your friend withdraw?

Jim

He withdrew and we understood that he was busy, he had a lot of caregiving things to do. But we also noticed, I’m talking about we in terms of about six other fellows all about the same age, we withdrew as well. And we didn’t quite understand why that was until we talked about it and figured it out.

Jodie

And what was it?

Jim

It’s, I think, the unfamiliar territory, the newness of it all. Fairly suddenly, all seven of us were landed on a new planet. There’s different gravity going on here. There’s different atmosphere to breathe. And it took us a while to realize that it was that much of a change.

Jodie

That’s so interesting because the idea that adopting the role of caregiver only comes about as a result of a change, a change in someone’s health status.

Jim

I was concerned about my friend, but I was also concerned about me. I really value my friendships and the thought of losing gradually through something as strange as simply distance. Losing a friend like that troubled me a great deal and I pondered and thought and wondered how to do this. Part of the distance was not knowing what to do. But a big part of the distance was simple respect. respect for him. Respect for his wife, giving them privacy. They’re going through a growth era in their life that I have no business entering. So showing you that respect was on my mind. So I needed some way to balance my caring for my friend and the respect that I have for him.

Jodie

In caregiver education at Family Caregivers of BC, we often talk to caregivers about how to get support. And sometimes that’s even trying to help them get support from their family and friends. So you’re speaking to the fact that even as a person who cares deeply about what’s happening, we don’t always know what to do.

Jim

Yes. And my friend said afterwards after we had a chance to, to reconnect, he didn’t know what to do. He didn’t know how to ask for help. He didn’t even know what he needed. It was all so new. He would say also it was also gradual. It’s the frog in the boiling pot thing. It’s just very incrementally gets worse and the stresses add up for him over the days. When I distress the most is when I found him exhausted. So much so that he couldn’t think straight. He’s exhausted because the day to day, eight hours a day turns into 20 hours a day and then four hours of very poor sleep. Day after day after day. So he was losing his mental capacity to even figure out what was going on and cope. That was distressing.

Jodie

So that did you do? What action did you take?

Jim

Oh, after the panic, you mean? (laughter) There’s a lot of that. A lot of consultation among his other friends. Like, what should we do? And we had this back and forth respect versus, oh, let’s get in there and do something that tussle was there continuously. And I can’t actually remember how I found out about the Family Caregivers of BC but once I saw it, I think I ran across your website just looking for help. I made an appointment and came in and boom, just all kinds of lights went off in my head. Like, there’s help here. There’s help for me to help my friends to all of us to help the fellow who need it. There’s help here and we walked out of there just feeling so relieved. And a week later, I brought all the fellows in and we all talked without the primary caregiver he didn’t attend. But all the friends showed up and listened to some options and saw a new world out there and we just walked out of there smiling because, ah, this is what we need to do.

Jodie

That’s just so beautiful. The idea that a friend group would be meeting without the person in question, but even just to consider how best they could support that person.

Often, we talk about how in order for caregivers truly to feel identified, supported and valued, that we actually need a societal shift. That it’s not just about formal health care and all those kinds of things, but having more people like yourself be empowered to know how to support caregivers.

Jim

Yeah, we kept coming back to the term community. Because it’s so prevalent to live alone, and alone meaning a husband and a wife and a single-family house and they see their neighbours when they shovel the snow off the sidewalk. That’s not community, that’s a model that has been lost in society from 100 years ago. And we’ve talked about this as friends and that’s why we are friends because this is our community. So we kind of had an advantage to begin with that we had this mindset of working together. I’ve met many people since then that I’ve told my story, who said, yeah, I know my friend who’s suffering has other friends, I don’t know who they are. And my response is, well go introduce yourself because you all share a very important objective and that is to help this person who’s suffering. And if you can do it a lot better together than you can individually. And that builds community. Right there. So it is a societal shift.

Jodie

So then you discovered that there were things that you could do to support your friend, what action did you take next?

Jim

The real challenge was to find out what they needed what my friend needed, and wanted and would accept. Not always the same things. And match that against what we were willing to do and wanting to give. And to be honest, not all of us were willing to drop our jobs and lives and be there 24 seven. That’s an unacceptable expectation. So we had to find the truth. It’s all about the truth. And the truth means we had to actually talk to him. And that was hard to do. Until we came across a principle that allowed us to share the truth. And the principle was this, “You are free to ask for anything. But you must also ask for everything that you need. And we agree to only give what we’re capable of giving.” So part of his fear was if he asked for anything that it would be an imposition on us. That’s why he didn’t, one reason why he didn’t ask even if he knew what he needed. The agreement is you tell us the truth about what you need will tell you the truth about what we can deliver. Once we got to that point, everybody relaxed, and we got back into the normal rapport because we have a model that we can talk to. And the model turned out to be pretty simple to begin with because at that time the needs were not that great. Meals were always, we’re a casserole culture. (laughter) Meals were always welcome. But one Friday, he ended up with five casseroles. You didn’t even have enough room in the freezer to freeze four of them while they worked on one. We agreed that maybe we ought to allocate the needs over time and what people can do.

Jodie

And to be more organized, to have a more organized approach.

Jim

So we had this set of principles now you tell the truth and we’ll respond. And now how do we organize this? The organization was really important because we realized he has a lot of friends, a lot of family members back east who wanted to help as well. So how do we figure out what they can do? And even invent some things that people who are distant can do so they, they’re part of this community. And they feel like they’re supporting and giving. That helps everybody. So once we got past those two elements, then we flowed.

Jodie

I noticed that the agreement that you made to tell each other the truth, in some ways restored the sense of equity or equality that you had enjoyed before your friend was a caregiver.

Jim

Very much so. Very much so. Yeah, it’s good to mention that because he did feel powerless for a long time. And now he had some power without the fear of, it’s the trust relationship that we ended up with growing even more because that trust he felt free to ask for what he needed. And because we were there suggesting things like, do you need a casserole? No. Okay. How about cleaning out your garage or changing the tires on the car to snow tires? Or we suggested things that he would say, oh, well, I haven’t been able to get to that. Yeah. If anybody wants to do that, that would be a great help. So that conversation opened up and we all feel better about that.

Jodie

So once you found a way to support your friend in his caregiving role, did your relationship change again?

Jim

Yes, we got closer in a different way. However, I hesitate here only because I know that there are some parts of his experience that we could not enter. It’s the part that embraces grieving, as well. If you haven’t been there, you can’t enter that world. So there’s some parts that we were not able to share fully. But we’re okay with that. We’re all gonna get there someday. So he was very open about then sharing what he was going through, even knowing that we didn’t fully understand and that helps us a great deal.

Jodie

So it sounds like you’re saying you became more organized. And you are able to find a way for even people who are far away to participate in creating this community around your friends.

Jim

Yeah, we had a tool for that and we found out about that tool through the Family Caregivers. It’s called Lots of Helping Hands and there’s probably other software tools out there. It’s a calendar organizing type of tool that anybody can sign up for free and find out what the needs are. The timing element, what day is this needed and if they can contribute then they can sign up right online. So it’s just dead simple and allowed the 50 or so people who wanted to work together. Our community ended up to be about 50 people. Some as I say are back east, family members, they wanted to know they couldn’t deliver casseroles obviously, but telling funny stories to the care caregiver and his wife and remembrances. Keeping the spirits up and oh I found this that reminded me of you and little things that they could contribute from afar was very successful. Because they wanted to help too. Everybody wants to help. That’s another part of the website. The Lots of Helping Hands website is opportunity to share photographs and stories and remembrances and things like that, too. So very useful. Course they all care about this, but I felt a little uncomfortable in intervening in what could have been seen as a family affair, a family issue. Why is this, me, a stranger entering in this? But I overcame that because I realized the benefit of us all working together, rather than working independently and duplicating some efforts and leaving gaps and others.

Jodie

Jim’s story shows that even when you feel alone, you aren’t. People around you want to help, you just need to be available to receive it. Start a conversation with a neighbour, let your community in a little, and find the courage to say what you need.

Jim

Ideally, reach out to your community before you need. Before you have the need. That’s hard to do. But it’s maybe a simple something as simple as knocking on the doors of the people who live next to you, whether it’s on a single family street or in an apartment or a condo unit. Knock on your door, yeah, you’ll get some strange looks. But introduce yourself and just try to make those connections. I guarantee you’ll find some people who feel the same because it’s a human need. Once you’re in the caregiving mode, it’s really hard to do that. Because it brings up the guilt. I need some help with this. And yet, I really should be spending more time with my loved one. And I shouldn’t need help and I don’t even know what to ask for in the first place. But if you’re in that situation, talk to somebody, talk to anybody. Talk to as many people as you can, just open up a conversation at the bus stop. You’ll be surprised at the type of reaction that you get. There are people out there who need this as much as you. They need to give as much as you need to receive.

Jodie

As Nancy and Jim discovered, communicating your needs in a caregiver relationship takes real courage, but the rewards are great. Honest communication is the first step to getting the support you need to stay strong in your role as caregiver. You may be left wondering, where could you open up more to receive help? How can your community best support you? And who can you reach out to today? Family Caregivers of BC has a toll-free Caregiver Support Line to help you answer these kinds of questions. Call us at 1-877-520-3267. Also, our Caregiver Support Groups offer a chance for you to share in person or to just listen with other caregivers in your area. Find your community by visiting our website www.familycaregiversbc.ca.

Outro

Thank you for listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and produced in partnership with the BC Ministry of Health – Patients as Partners Initiative. Hosted by Jodie McDonald. Produced and sound edited by Organized Sound Productions.

If you like what you’re hearing, discover more episodes, and find more caregiving resources at www.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.

And finally, don’t forget to subscribe to our show on your favourite podcast listening app, so you don’t miss an episode. Thank you for listening and taking the time to learn and care for yourself with other caregivers out loud.

Next time on Caregivers Out Loud…

Barb

The hardest thing was watching a baby grow and a mother die. That was the hardest. I was dealing with grief and loss at the same time as the second hardest thing was juggling time and not disappointing everybody. Everybody around me said, do what you need to do, but it was me who really struggled with, well how do I know what the most important thing to do is today, I’ve never watched anybody die before. And I didn’t know my mom was going to die. So I was sprinting and marathoning at the same time and I figure I’m going to do this because I can. The difficulty of constantly examining am I do, I could be doing more. How do I do this and do it all well and letting go of some things.