Family Caregivers BC

Family Caregiver Resources

Full-Time Caregiver and Mother: How Jean Ellison Balances Two Essential Roles

Caregivers Out Loud

Go Back to Podcast Overview

How do you honour both yourself and your family member when giving full-time care? 

In this episode, Jean Ellison speaks about her experience as a full-time caregiver to her daughter, Brooke, whose story of life as a ventilator-dependent quadriplegic is well-known and inspirational. 

For more than 30 years, Jean Ellison has balanced the roles of full-time caregiver and mother. While it was always clear to Jean that Brooke would live at home and not in a care facility, accepting her new reality and career trajectory was not a simple process. Jean strives to find happiness and laughter in every day, treating each one as a clean slate for both herself and her daughter.

Get a glimpse into Jean’s challenging and heartening experience:

  • What it was like to be trained and tested to care for her own daughter
  • Who she has become despite an unforeseeable change in her life’s direction
  • Where she finds the middle ground between home care and motherly compassion
  • How hope and acceptance can combine to create a fulfilling life despite the obstacles.

Follow and Subscribe to Listen

Quotes

  • It was a definitely growing experience for me because when I was young and deciding on a career, nursing was the absolute last thing I would ever have wanted to do. But it is an enormous responsibility and it does take its toll to know that literally every breath that Brooke takes, I am responsible for. It’s scary and it’s a very big responsibility. But I feel like I’ve really grown as a person because I am doing it. I am doing it.
  • One of the things that I try not to do is make her feel guilty for the fact that she needs care. It’s hard, but I do it willingly. Every day for the rest of my life that is what I’m going to do. Well, I can’t say there’s nothing I would rather do, that would not be truthful, but this is what I’m going to do, and I do it for her, and I do it out of love.
  • Start each day with a clean slate. Try to start fresh, you know, do the best you can. We’re only human, so we can, you know, only do so much and we will make mistakes, but just try to get some happiness out of your day. Try to laugh and try to be strong and love each other.

Resources

  • Read more about Brooke Ellison’s story, https://www.brookeellison.com/
  • Family Caregivers of BC Caregiver Support Line: 1-877-520-3267 (Monday through Friday 8:30am to 4pm PT)

Connect With Us!

Follow us on Social Media

Thank You

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: As with any young child, kids want to be seen and heard – to be loved by their family, especially by their mother. So when it comes to mothering a child who also has a disability, this need for care requires a balancing between the immediate care of the day-to-day needs – like as an on-call nurse – to the nurturing care that only a mom can provide. So how does one be a mother, while also being the dominant caregiver?

This episode is a two-parter, as we uncover the unbreakable bond between a mother and daughter. We’ll learn how miracles can happen, even after a devastating accident.

Today, we focus on Jean Ellison, the mother and caregiver to Brooke Ellison, a ventilator-dependent quadriplegic. On Brooke’s first day of grade 7 in 1990, which was also her mother’s first and last day as a full-time teacher of children with emotional disabilities at a local school, Brooke was tragically hit by a car, paralyzing her from the neck down, marking, the beginning of their new lives. So what path does Jean take, to decide and commit 100% to being a full-time caregiver, 24-7, and to be that constant in her daughter’s life? Change doesn’t even begin to describe this enormous responsibility.

Let’s start at the beginning of their new reality.

[MUSIC OUT]

JEAN: When Brooke was taken to the hospital, she was initially in intensive care, pediatric intensive care, where she stayed for six weeks. Because I was so shocked in the beginning, It was hard to comprehend – I didn’t even really know or understand the magnitude of the word quadriplegia ventilator dependence. For me, it was, shocking and very difficult to understand. Uh, I had no idea that it was probably going to be for the rest of her life.

So while we were in intensive care, uh, for the six weeks, we always kept very hopeful. I thought that, you know, she just had to get better. You know, it was going to come to an end, and she was going to be, uh, the way she was before she was hit by the car. So it wasn’t really for me until Brooke got to rehabilitation in New Jersey, that it started to sink in that maybe that wasn’t going to be the case. But we always kept hopeful that things would change and that she would regain some function back and she could return, uh, to some kind of a normal life.

BILL: Sure. And I think that expectation arises for a lot of, uh, caregivers like yourself, Jean. We have sometimes an unrealistic expectation that medicine, uh, can perform miracles, or maybe even some divine intervention is going to perform miracles here. 

JEAN: A long time for that to sink in. And even to this day, we’re still hopeful.

BILL: Of course, it’s important for us to remember in this conversation that you’re still in the middle of this. A lot of people don’t understand that not only is it the interaction between the two of you externally, but both of you are processing this narrative internally, the emotions. And yet, I’m so aware of how our audience of caregivers is anxious to hear this story, um, because some of them are still at those early stages. At what point again, in your recollections, uh, were the decisions rising about, um, not only your role Jean in the care of Brooke, but Brooke’s care generally needing to happen on a long term, ongoing basis, with some more support for the both of you? There were some decisions that had to be made about hospitalization, et cetera. Can you talk a little bit about that?

JEAN: One of the first things that we were asked when we got to the rehab center was, “Are you planning on keeping Brooke here in the long-term care, or is she going to go home or some other place?” And my husband and I, this conversation was not with Brooke. It was just with my husband and I, and, uh, probably a social worker. I don’t remember who exactly.  And we were just stunned at the thought of, well, that’s not even a possibility to just leave her there in the long-term care, not for us. So, we said, we’re going to what do we have to do to get Brooke out of here and discharged to our home? And that’s going to start today. So they said that, well, we both would have to learn how to provide care for her. And we said, ok, well, we will do what we have to do. And so from that point on, for the next, I guess it was seven months, that’s what we did. I was there every day with her. My husband would come on the weekends. He would spend, sometimes weeks at a time with us or in my place. And we learned and we had to be tested on how to take care of Brooke. Then we had to realize at that point that this was going to not be a short-term thing. We really needed to know every aspect of her care. And we had to learn that.

[MUSIC IN]

BILL: This decision, and knowing the long-term level of care and commitment Jean would be making to Brooke, signified the change to come. In those early days, Jean had a good sense of what needed to be done at home for Brooke’s future care.

[MUSIC OUT]

JEAN: Well, there was a lot going on at home that we shared with Brooke as much as we could. We live in a colonial-style house. And all of the bedrooms initially were upstairs. So, we knew that at the point where she did come home, she would not be able to go upstairs to bed. So there had to be a lot of renovations done in the house and to provide a space for Brooke to sleep, a bathroom, you know, a wheelchair accessible bathroom, a space for her to do her work. So that is where she had a lot of input. You know, she picked out decorations and this kind of thing. My husband would record, uh, the construction. They started in January, actually. And all the neighbours pitched in. And so he would record all of the progress that was made over the six months that they took to do the construction. And so she kept up to date, you know, constantly. And every time he brought the video to us, it got her a little bit closer to coming home.

So that was one thing. A lot of the issues with having nursing care at home, they said that we would have to have care at home for her, nursing care, that was another stipulation for her to get discharged from the rehabilitation center.

So there was a lot of fighting going on with the insurance companies, nursing agencies trying to get the proper services in place so they would release her. They wouldn’t just release her to us.

We had to provide nursing care at home which was, uh, quite difficult, actually. That was problematic. But Brooke was spared most of that until the day that she was supposed to be discharged.

BILL: Absolutely. So, Jean, say a word about your own perspective about that as you progressed with Brooke through all of this. Having to balance that, being the mother and wanting to be solicitous and caring and yet needing to balance her need for not being thought of as disabled. Can you say a few words about your experience in that?

JEAN: Let me see. It was a little bit challenging because in the beginning I was still learning how to take care of Brooke in this way. We had some nurses here and um, they were um, willing to help, but, you know, I think naturally they felt a little bit, maybe bad that she preferred me to help her than them. So it was a little awkward for me. But in the long run, I feel like I was better able to take care of Brooke, uh, by having to do a lot of it myself. You know, I’m like a hands on type of person, so that gave me the opportunity and I didn’t become dependent on the nurses to take care of Brooke. I learned and I took care. And for me, in the long run. It worked out better because I was able to independently go to school with her and help provide the education that she wanted to do and the activities that she wanted to be part of. I was able to do that with her. And I may not have been able to do that if I relinquished all of our care to nurses.

BILL: Sure. And yet there’s a balancing that goes on in there between the medical technologies and the actual medical, uh, needs that the two nurses can provide with the compassion and the human touch that a mom provides. So there must have been some significant balancing for you in that process.

JEAN: There is. I think the most important thing is That obviously I have the emotional attachment to Brooke that other people would not have if it were just a job to them. So I think that makes a very big difference in the level of care.

[MUSIC IN]

BILL: As the dominant caregiver for Brooke, Jean entered a new territory of mothering that was entirely unknown, strange, and stressful. She straddles the line between being a caregiver and a mother. It begins to change her sense of self, as she shapes this new identity.

[MUSIC OUT]

JEAN: It was a definitely growing experience for me because, you know, when I was young and deciding on a career, nursing was the absolute last thing I would ever have wanted to do. But it is an enormous responsibility and it does take its toll to know that literally every breath that Brooke takes, I am responsible for. It’s scary and it’s a very big responsibility. But I feel like I’ve really grown as the person because I know that I am doing it.  I am doing it and that makes me feel good.

BILL: And when I speak of, uh, this being a spiritual experience, it’s about the pivots that both of you had to make, uh, that I, uh, started down one path of my life and oh boy, don’t get to go down there anymore. So what path am I going to take and how am I going to take it? And your story is so beautiful but I wanted just to explore for another minute or two about, um, especially now. This is an ongoing process, and I’m assuming decisions continue to arise about not only, Brooke’s care, but, uh, about your engagement, uh, with the care than Jean. Um, have there been any recent, what I will call tension or pivotal points for the two of you where maybe there was some disagreement about how this ought to proceed, how the care ought to be undertaken. Or moments where you both suddenly broke out in laughter, realizing that you were already on the same wavelength.

JEAN: Well, recently my husband is retired, so since his retirement has been very helpful. Alleviating a lot of the stuff that goes on here in the housework and laundry and that kind of thing.  So that makes things a little bit easier.  However, recently, uh, he had a surgery on his knee, and we didn’t know what to expect that we knew that it was going to be a pretty serious thing and he was going to be out of commission for quite some time.  And so we decided, well, this is really a good idea at this time to try to acquire some nurses.

But I thought to myself, well, Brooke didn’t really feel that comfortable with nursing, when she was little. But she said, I understand now that this is a necessity. And so she said that she would be open to it now. It was something that we decided together to do, at least that okay. The time is right now, so we have to try that. You know, we were getting older and your care is getting more difficult, and we need to do this. So, that’s what we’re trying to do.

BILL: So, Jean, from your side of that conversation, knowing that there are some of the same kind of moments, you’re just exhausted, uh, both emotionally as well as physically. Uh, how do you, um, gauge your own engagement with Brooke, uh, about those conversations?

JEAN: Brooke understands that it’s difficult.  It’s a difficult life. And one of the things that I try not to do is make her feel guilty for the fact that she needs care. That would be the worst thing ever for me to do. It’s hard, but I do it willingly. It gets me up in the morning, you know, and it keeps me going all day, no matter circumstances are, I know that every day for the rest of my life that is what I’m going to do. And I do it willingly, gladly. And, um well, I can’t say there’s nothing I would rather do, that would not be truthful. But this is what I’m going to do, and I do it for her, and I do it out of love.

BILL: The tenor of your voice, the clarity of your words speak for themselves. I mean, how deeply engaged you are with Brooke and with your own life, I mean that’s, uh, the difficult part is, uh, to not get caught up in I’m going to sacrifice myself here. 

JEAN: No, I don’t like that. Woe is me, I don’t like that.

BILL: Exactly. Yeah. So, uh, going forward now, you two have arrived at what I consider a beautiful place here, filled with all these challenges, and yet it’s ongoing. Um, so how do you two, um, converse about, uh, the future six months from now, two years from now, do you have those conversations?

JEAN: Yeah. They’re difficult to have because there’s no certainties about anything. Brooke worries. What if something happens to me? Who’s going to be able to provide care for her? I don’t have these answers. I don’t. So I just try to figure out, you know, what we have now. I’m hopeful that we will continue to, you know, try to get nursing and maybe be successful. Maybe family members will step up. Friends, close friends, that kind of thing. That’s basically the best we can do. My husband certainly, you know, is more than willing to do what he can do. 

BILL: I say to family caregivers all the time, um, there’s no better arena to face your own mortality than to do this caregiving. That the reality that we’re not going to live forever. So I always, well, as often as I can like to speak about the spiritual component, which revolves around the meaning of this event, the meaning of what I have now, the joy that’s available to me now. The aspect of my life, however, it is unfolding at this point in time, is meaningful. And it gives me a sense of my, uh, belonging to the universe, as it were. So it’s not so much a matter of trying to solve every problem and fix everything as it is to be in the moment, as I hear both of you talking so articulately about.

JEAN: That’s all we have, really.

[MUSIC STARTS]

BILL: For Jean, the difficulties of being a caregiver are eased by accepting her entire self. All of her characteristics, even the ones she’s dissatisfied with. So that she has an easier time addressing areas in need, like when tensions arise. Knowing herself gives her a greater ability to care for Brooke. As their caregiving relationship continues, Jean is now able to be in the moment without drifting through life on autopilot. Going from task to task, they have instead created a strong connection that benefits both of them. As a caregiver and a care receiver, how can you emulate some of their experience for your own path? What can you do to check in with your sense of self? 

To explore these questions or other ideas around caregiving support. Call the Family Caregivers of British Columbia Caregiver Support Line at 1-877-520-3267. 

Jean and Brooke’s story is in fact, a love story, a story of a bond and spirit that won’t break even when the body did. As with any story, there’s always the other side. Now that we know what Jean went through and is still going through as the caregiver, what about Brooke’s perspective to hear the other side of this relationship? Our next episode on Caregivers Out Loud will feature Brooke as she shares her emotional insights about what it’s like to receive Jean’s care as a care recipient and as a daughter. Before we get to that, Jean has some final thoughts for all caregivers.

JEAN: Although caregiving is difficult, to try to start each day with a clean slate, try to start fresh and do the best you can. Try to get through each day. We’re only human, so we can, you know, only do so much, and we will make mistakes. But try to get some happiness out of your day. Try to laugh, and try to be strong and love each other.

[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.