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Episode 27: Navigating Care in the Sandwich Generation: Dignity, Boundaries, and Advocacy

Caregivers Out Loud

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How do you uphold respect and dignity for an ageing parent when balancing the regular demands of career and children?

So many people today are part of the Sandwich Generation—caring for a parent while still managing work and raising kids. Ensuring your parent feels safe and cared for without losing sight of your own boundaries and wellness is a hard balancing act to manage.

With over 38 years of experience as a registered nurse in various settings, including ER in major trauma centers, remote nursing on Southern Gulf Islands, community health care, long-term care, and hospice care, Valerie Wiens was perhaps better prepared than many adult children when it came time to care for her parents in the last years of their lives.She can certainly relate to how overwhelming and difficult it is to navigate the healthcare system for both caregivers and patients. 

Valerie recognizes the importance of setting aside ego to enable thoughtful communication, an important part of ensuring parents feel dignified and respected as they make the transition to being “parented” by their own children. She also shares her approach to that fine line between demanding respectful care from medical professionals and remaining calm and reasonable in the face of frustrating interactions. 

As Valerie says, it’s important to “be effective” and have “expectations that are reasonable and measurable,” both when interacting with the healthcare team and in your own expectations for caregiving. Every caregiving journey will be different, and finding ways to be fully present, whatever that means for you, is the most meaningful gift you can give.

Consider the impact your caregiving interactions have, both on your parent and yourself:

  • When to set aside your ego so your parent can retain their dignity;
  • How to advocate for a parent’s care while also respecting healthcare professionals;
  • Why even the most loving children must develop boundaries when caring for their parents;
  • How setting caregiving goals early on can transform your mindset in the end.

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Quotes from Valerie Wiens: 

  • “For me, what I found effective was we’d listen to the explanation and then, you know, mom, did you feel like you got all of that? Let’s see if I got it right. What I heard him saying was this. And I would summarize what was told directly to my mom. And so in that way I could show or demonstrate to the professional what language my mom was able to hear. And also that I wanted to include her in this. But we could simplify it with respect.”
  • “So I always think that in families there’s areas that you can give with skill, joy, and it doesn’t drain you so much. So you can put boundaries even within that. In an ideal world, all of the tasks could be divided up into everyone’s strengths. When I’m speaking to people, I try and keep that in mind, listing the tasks and like, who gravitates towards each task”
  • “It was a privilege to give. And when I felt like I was fully present, I thought that was more of a gift to show my love for them. And what I encourage people to do when they’re kind of at the start or just in little ways in a caregiving journey to really identify what their goal is. If your goal is to make sure that they know they’re loved and they know they’re safe, you can meet that.” 

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Transcript

[MUSIC IN // INTRO]

VOICE-OVER: You’re listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel.

[MUSIC DEVELOPS]

BILL:  The healthcare system, on its own, can be overwhelming for family caregivers. So when you combine that with caring for a parent, caregiving can be a tricky thing to control. As the sandwich generation continues to grow, adult caregivers supporting their aging parents often ask, what do we do about mom? Or dad? How do you help your parent feel safe and cared for?

In today’s episode, we’ll reframe what it means to be a caregiver stepping into an unfamiliar territory of being the parent to a parent. We’ll share what it’s like to set boundaries without guilt from Valerie Wiens, a registered nurse and caregiver to both her parents for their last four years. Valerie’s personal experiences, combined with her professional knowledge of the healthcare system, will support you in upholding dignity and respect for seniors.

Early on, Valerie learned creative problem-solving skills, which she picked up from homeschooling her kids, that turned into a foundational experience she still uses today.

[MUSIC OUT]

VALERIE: A friend had a preschool business, and she said they did an experiment on how to not say the word no for three days. And I tried it because I had a child that really needed firm boundaries. But in learning how to not say no, I learned how to distract and move to the next thing. And this skill surprised me later on when I worked in a dementia care unit. It’s the same. You don’t come on straight on, you don’t tell a person what to do if it’s for their best, and you’re trying to be careful, distracting works. 

So I found that along the way the experiences I had with our own children, with working in the community, even in emergency, started to make sense that I actually was dealing well with people with dementia. But the skills that I learned changed me. And that meant that I was able to not have the ego to tell people what to do and I think that was a skill that bore well. 

And then the ultimate test of caregiving was when my mom got a progressive illness. She was diagnosed with progressive supranuclear palsy, which is a terrible and very quickly debilitating disease. And so we were out in Manitoba visiting them. And I had, I have a very full life here with our kids still needing help, going through high school and university at that time. 

And my job was almost full time as a nurse in the valley, Comox Valley. And told my parents that I would love to help them, but I couldn’t. There’s no way I could come to Manitoba. They’d have to come to me. And I didn’t want to take them out of their community. And suddenly my dad phoned one day and said, well, we’re taking you up on your offer and we’re moving there. Which I actually didn’t know I had offered that, [LAUGHTER] but felt, felt privileged to help. And my dad was so grateful to have come here and feel safer and to have another pair of shoulders to make decisions and carry the burdens of those decisions for my mom.

BILL: So dignity becomes a very crucial part of your work that obviously you learned early with the kids and, and then later in your other work. So say a little bit about how you see this show up or get lost in the care of loved ones and what steps caregivers take to uphold the preservation of dignity in the caregiving relationship.

VALERIE: To carry the parenting skills that I learned. And you know, even if people don’t have children, they’ll have interacted some teachers or people in a role where you lead others. But as a parent, when you’ve had compliant children or easy to raise children, I think you start to feel like what you say the person should follow and that’s natural. Whereas to us, because we had had more challenges, it felt like I didn’t just expect that my word was the right one and golden and I’d have that person follow. And I think that translates into caregiving for seniors. My word is not the one to listen to. I’m not in charge of everything. 

The analogy breaks down because our seniors are not our children. We do have a responsibility for raising our children differently, but there is that protection and the, yeah, looking out for their best interest, not for what I want some care. Like if you’re in a facility, you can watch, and maybe this is just how I look at it, but I watch some caregivers who are working like employees and the ones that just say, you should do this. I think, wow, you must have had really easy to raise children that you think you can just speak and they’ll do it. 

I think dignity in facilities is a little different, and in a health care system is a little different in that you can’t demand this of other people. You can’t tell them to treat your loved one with dignity and what I would do with my mom is if the doctor came to speak to her there, or a professional was speaking in front of my mom, and my own mom with her illness, she was in a wheelchair and could hardly move. She could move one finger towards the end and that’s it. But she knew what was going on, but couldn’t speak very quickly or very well. So you could easily presume that she didn’t understand. It becomes a very small step. 

And for me, what I found effective was we’d listen to the explanation and then, you know, mom, did you feel like you got all of that? Let’s see if I got it right. What I heard him saying was this. And I would summarize what was told directly to my mom. And so in that way I could show or demonstrate to the professional what language my mom was able to hear. And also that I wanted to include her in this. But we could simplify it with respect. I don’t think you can hit professionals over the head and make them include people and make, you can’t re-educate generations. But there’s still the respect that I will always advocate for my mom, like, it’s my job to include her in the conversation.

BILL: In situations where caregivers feel their loved ones are being ignored or not taken seriously by healthcare professionals, what can they do to ensure their concerns are addressed? Well, I think you spoke to that very eloquently the way in which you actually become an interpreter in some cases.

VALERIE: I think you do, yes. But, I think there’s practical ways to do that as well. And the first thing I always think is, when you’re caregiving, you have a team in the community or a team in the facility and identify a key person. You can get lost in, oh, all the care aides. Well, you know what? I bet you there’s one that mom lights up when she walks in or she talks well to them. You watch and you see, oh, that’s Sarah. She’s got my mom’s interest at heart. I can trust her even if she’s not there that much. But finding one person, and maybe one of the occupational therapists or a trusted gp, but somebody who’s on your team, that is on your mum’s side. 

Because their motivation is not just to get the job done. Their motivation is because they actually already care about your loved one. Sometimes they just click and it’s really nice to allow another person to have that role. But because they have some genuine affection for your loved one, they can also influence change locally when it’s needed. When you’re advocating, you want things not to be ignored. They can influence the culture there behind the scenes more so identifying that carried. 

I also think that important thing for advocating is learning how to complain well. To yell and get mad and tear a strip off someone for something that wasn’t done doesn’t get you very far. It’s just an angry outburst. You want to not focus on the minors as well because some things are just not going to change. They’re not worth getting fussed about. But there’s some things that are definitely important enough to ask. And so, I mean by yelling it just makes you an outsider. You’re part of the problem. You’re on opposite sides of the person that you’re trying to get to change, or to do a better job, or to meet a need better. So you want to be effective. You want your expectations that are reasonable and measurable. 

A lot of times in facilities when they’re short staffed and I’ve had a few consultations recently where they haven’t had a bath and it’s been two weeks and they’re like, oh, sorry, staffing. Well, I understand that’s the problem but it’s affecting my loved ones skin and their sense, you know, sense of self and their cleanliness. And so if you’re going to focus on, how are you going to get a bath, let’s talk. I understand you’ve got problems and I’ve got wishes, but this is reasonable, this is measurable. And if the bath doesn’t happen on day seven, I would like a call on day eight so we can solve this. Or I would like X done like let’s work on this. 

And then part and parcel to that is to speak to the right person that can affect some change. And this is different. Like in a similar situation I would talk to the director of care or assistant director of care. Whereas in the hospital I actually talked to the care aides. I didn’t go way over above. I just said this is what’s needing to happen. Our client’s son is coming. She’d love to, it’d be so great if she looked pretty and had her hair done. And here’s some clothes, could you help her tomorrow? And that’s an emotional request. Whereas the other one is an expectation that they need to meet these standards because their lack of staff means that I have a complaint that’s valid. 

Further to that, sometimes having that complaint with the right company, it’s called PCQO, it’s an office, and you can make a complaint even if you’re not the type of person to complain and you don’t want to ruffle feathers or if you’re the type of person that wants to yell or whatever, this is a tool that you can use and I would use it as a positive thing rather than sounding like, I’m going behind your back and complaining to licensing because I’m angry with you. I would actually, and I have done this before, said I would like to put a complaint in that your staff level is low and not meeting my mom’s needs so that the people higher up can help get you staff. I’m not trying to jump above a manager and make waves. I’m trying to speak the language of statistics that they need to get better staffing.

[MUSIC IN]

BILL: Advocating with care creates a very personal and meaningful relationship. Valerie’s perspective on using existing tools to positively shift the caregiving experience, not only supports the care recipient, but the caregiver too. If you would like more information about the PCQO or the Patient Care Quality Office that Valerie mentioned, check the show notes for a link to make your voice heard by sharing your feedback.

Navigating caregiving also involves taking steps to set boundaries to manage feelings of being overwhelmed in this fairly daunting environment. Although Valerie feels very strongly about how boundaries can prevent burnout, she also recognizes that most caregivers don’t know when caregiving actually started.

[MUSIC OUT]

VALERIE: It sometimes sneaks up slowly and then a crisis might make it a little bit more real. But when you know that you are going to be especially a key person in caregiving, that you identify both what your skills are, what’s your comfort level with different tasks, and also what’s your availability, your time, your emotional availability, your place in life. Because most people are in that sandwich generation, you have other responsibilities.

BILL: And sometimes it can be economics included in that.

VALERIE: Exactly. Yes. It’s a lot. You can’t give up your work to spend time. You can’t travel. A lot of times it’s from a distance. There’s so many factors. There’s also so many family dynamics, and I’m very aware of this. A lot of families that come to me for consultations, they’ve come from a fractured family. The dynamics are already like the sensitivities towards each other is off the chart or they’re estranged. Not everyone comes from a really healthy place that can make the best healthy choice and just serve, and love, and give to their parents or whoever they are in this role. And so I think boundaries are healthy for that. 

For somebody who grew up with a very unsafe, unhealthy childhood. And then everyone looks at them and says, oh well, of course you have to caregive for your parents. The expectations just can’t be there. But there’s still needs, right? There are still physical needs that when it comes to caregiving your parents, they need to be safe. There’s food, shelter, like, their basic needs have to be met. And sometimes the boundary in that situation is that perhaps someone. And I’ve talked to lots of family members that have said, I just won’t be in the same room as my father, but I’d help my mom. Or I can’t physically be in the house because it just triggers me and what can I do from a distance? And I think that’s really worth having a good family meeting or having somebody on the outside identifying those things. 

So when you go through all of the tasks, you say, well, that person who’s estranged, they can order the groceries online for delivery, they can set up schedules, they can meet needs that are from a distance, maybe finances, maybe they pay the bills. And these are objective things they can do. Which those tasks can be done when you’re from a distance, when you don’t have as much time, when you have family dynamics that you don’t want to lose your own hard won mental health and saying, you know what, that’s good. 

Or you hire somebody to be a paid caregiver who will come and do the tasks and they don’t have the baggage. And then even in a healthy family situation, I know I’ve spoken with another person who said, oh no, this is my mom, there’s no boundaries with her. I will be there whenever, they don’t want to put boundaries. And I think that’s born out of I will just be here because I love them and I will do anything. Which I still would recommend boundaries personally, because I think it enables you to go the distance. 

So I always think that in families there’s areas that you can give with skill, joy, and it doesn’t drain you so much. So you can put boundaries even within that. This is something I won’t do, but these things I will do and I will give and I don’t get taxed or drained. Whereas another family member and in an ideal world, all of the tasks could be divided up into everyone’s strengths. So when I’m, when I’m speaking to people, I try and keep that in mind, listing the tasks and like, who gravitates towards each task and with what you can give to keep your parents safe, and healthy, and meeting their needs for the long haul. It’s usually a little longer than you think.

[THEME MUSIC IN]

BILL: The role of a family caregiver provides dignity and safety to the care recipient and many caregivers often reflect on how the journey provides personal and spiritual growth as well. Most of us will take on this role without knowing it, and have yet to realize what’s to come. 

If you or someone you know is taking on this caregiving role who is looking for support, call the Family Caregivers of BC caregiver support line. Here, you’ll access free guidance and resources like expert-led events and community support groups. Call toll-free at 1-877-520-3267.

[MUSIC CONTINUES]

As Valerie says, “When you’re giving to somebody who’s vulnerable, you have to rise to the challenge of it.”

VALERIE: That’s something that’s under-appreciated or we don’t talk about the changes that you go through when you are giving and trying to do it well. I think people in whichever area they’re giving, like whether they can give hands on or they’re from a distance, whatever they’re doing, it’s never, it feels like it’s never enough. There’s always guilt associated, but I found that having looked after the needs of both my parents, through all those changes, it was never enough, guilty, wish I could do more, but at the same time it was a privilege to give. And when I felt like I was fully present, I thought that was more of a gift to show my love for them. 

And what I encourage people to do when they’re kind of at the start or just in little ways in a caregiving journey to really identify what their goal is because it might be different for different people. If your goal is to make sure that they know they’re loved and they know they’re safe, you can meet that. You can always feel like it’s never enough. But if you’ve met that, I know that they knew they were loved and they were safe. That can be met by hiring a caregiver. It can be met by finding the best facility for them. It can be met by having them at their home or in your home. It means that how you caregive is variable and meets different needs. But the goal of the caregiving journey can still be met. 

Like, looking back, now that both my parents have passed, I can think of lots of things I would wish I’d do better. Hindsight’s that way. But I also know that by doing personalized care for each of them, visiting them, sewing my mom’s clothes, just little ways, painting her toenails, those things showed love. So at the end, I didn’t have that angsty feeling of, oh, it was horrible caregiving. I mean, it was draining. But I know I accomplished what I set out to because I knew those things were met. So that meant that I could let go of my parents’ death and then look back over their whole life with a little more peace. And they became a whole person that I could appreciate more. And I think that was an important part to know that I did what I set out to do, what was the most important thing.

[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.

Finally, don’t forget to subscribe to our show on your favourite podcast listening app, so you can take us with you wherever you go. Thank you for listening and taking the time to learn and care for yourself with other caregivers, out loud.

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