Rachel

Rachel
Age at interview
27
Age at start of caregiving activities
14

Rachel is a single 27-year-old woman who works full-time as a lawyer. She has cared for her mother (whom Rachel describes as a proud Caribbean woman) since she was a teenager, when her mother developed multiple sclerosis. Rachel became her caregiver when she was 14 years old. Her mother is now 61 and is semi-independent, living alone across the road from Rachel in an adapted apartment, where she receives daily support from Rachel and several paid caregivers.

Caring for her mother’s chronic illness has been an integral part of Rachel’s life since her early teens. It took some time before her mother was properly diagnosed – Rachel actually felt relieved to learn that it was multiple sclerosis and not Lou Gehrig’s Disease. Without her father around, Rachel soon became the primary caregiver, and continued until her mum started using a wheelchair and needed more help from other health and social service providers. Rachel loves her mum very much and they continue to have a very positive relationship, but Rachel feels that at 27 years old, she needs to start making different decisions to begin her own adult life. Rachel works long hours as a full-time lawyer, and has made many compromises and sacrifices around her own lifestyle, academic pursuits and life goals to be close to her mother. She dreams about moving east to be closer to friends. She believes that her mother is supportive of her plans to focus more on her own life at this point. Nevertheless, Rachel worries constantly when her mother is alone in her apartment. She calls her daily and visits as often as possible, but feels relieved to have more help for her mum’s care.

Rachel is frustrated by the lack of continuity in the care provided. Once there were about 30 different people attending to her mum in one week. Constant training is required for her mother’s ever-shifting care team. Overall, her interactions with the health and social care systems have not been satisfactory in terms of accessibility, responsiveness and empathy. She has found that the support she has received from friends, counsellors, members of her yoga class--and especially from MS support groups-- has changed her life and provided essential coping skills. Many of the support group members have become close friends.

Videoclips

Click on the videoclip title for a full page view. Click on the transcript button to open or close the transcript section.

View transcript

It started when I was 13. My mom came in my room and said, sat me down and said, “I have something to tell you.” She was actually originally diagnosed with Lou Gehrig’s disease—with ALS—so I was told that she had ALS and that she would probably die within the next few years. And then I’m not sure exactly when they discovered that she didn’t have ALS, [but] she actually had Multiple Sclerosis. And it’s never been so happy to hear that you have MS as opposed to something else.

I don’t remember when the second conversation was, but she told me at some point, “Oh, I don’t have ALS. I have MS”. So, we were obviously quite pleased with that result as opposed [to ALS], but the year probably—or two years—leading up to her actually coming to me and telling me that she was falling a lot and having a lot of problems, she’d been going back and forth to the doctors and no one would really listen to her story, and no one would take what she was saying seriously, and they just sort of brushed her off and said, “You’re fine, you’re fine”. But, she knew something was wrong. So, I think she actually started being quite adamant about looking into figuring out what it was that was wrong. 

So, she finally figured out she had MS. She has primary progressive MS, which is the worst kind you can have. So, I think there was some sense of relief in her knowing what it was that she had. Then, I think immediately thereafter, she started walking with a cane. Her left leg is the part of her body that is the most affected, or was at that time the most affected. So she started walking with a cane immediately, and then I sort of remember thinking—you know when someone doesn’t tell you that you have something, you kind of just tough up and say “Oh, I’m fine” and you keep going? And then the minute someone actually tells you what you have you succumb to it a lot? I remember that sort of being the case. 

It’s always just been my mom and I. She’s a single parent so I kind of feel that I’ve always been a caretaker in a way because we both looked after each other a lot. But then after, that she just sort of slowly progressed, and her leg got worse. She had bouts of vertigo, and I remember when I was 16, she probably had vertigo for two months because [she] couldn’t really get in and out of bed. I remember one time, our landlord in the apartment we were living at had to come upstairs and carry her down to the car so he could take her to the hospital. I was a teenager, so to be honest, I don’t remember a lot. I think I blocked a lot of it out, but I just remember knowing that I had to be there more.

View transcript

And funnily enough, I had called—I call her every day—I called her that day and I hadn’t heard back from her and I always get really concerned when I don’t hear back from her because every day I don’t know what’s going on. And I, at that point, had made a conscious decision just to not freak out and, “It’s okay, and it’s okay if she doesn’t get back to you sometimes.” And I heard from her the next day, but then I go see her 4 days later or whatever and she’s black and blue on her arms and with a sling or whatever. And I said, “You can’t not tell me when things like that happen because my constant fear is that things like that are happening and that I don’t know about them. So you just validated that experience for me, and that feeling for me. So now, whenever you don’t call me back, I’m going to think you fell down and hit your head, you’re bleeding out on the floor or something.” 

At the time I saw her fall a lot, and I remember one incident. We had white carpet and she was up really early and she was holding onto the chair for support, but she lost her balance and she fell back and she cracked her head on the corner of another chair, and I just remember hearing her scream and fall, and then I ran in the room and just see blood on white carpet coming out of her head. Yeah, so… And then I did not leave the house after that at all, just completely afraid that she was just going to just fall and die really.

View transcript

She’s in a disabled suite that’s outfitted for someone who is sort of mildly disabled, but not someone who is getting more and more increasingly disabled with time as she is. So it’s not necessarily the safest space for her. And assisted living comes up, and comes up, and comes up, and she’s terrified of it and wants nothing to do with it. She’s had some really massive falls and she fell one time, almost broke her arm, and was lying there for 2 ½ hours with no one around. And one of her caretakers finally came, but didn’t have a key to the door and had to go knock the door down to get to her. And a) that happened, and so she’s clearly in a situation where she’s not safe, and b) she didn’t tell me about it for probably 5 or 6 days. I was going through something else at the time and she didn’t want to burden me, so she didn’t tell me about it. And funnily enough, I had called—I call her every day—I called her that day and I hadn’t heard back from her and I always get really concerned when I don’t hear back from her because every day I don’t know what’s going on, and I, at that point, had made a conscious decision just to not freak out and, “It’s okay,” and, “It’s okay if she doesn’t get back to you sometimes.” And I heard from her the next day, but then I go see her 4 days later and she’s black and blue on her arms and with a sling or whatever. And I said, “You can’t not tell me when things like that happen because my constant fear is that things like that are happening and that I don’t know about them. So you just validated that experience for me, and that feeling for me. So now whenever you don’t call me back, I’m going to think you fell down and hit your head, you’re bleeding out on the floor or something.” 

So, I still deal with that but I try to support her decisions as much as I can, and her wanting to stay as independent as possible and live where she lives. She used to be an interior designer, so her home space is extremely important to her—probably top of her list of priorities. So she wants to stay in a space that she feels as good and as independent as possible, and I want to support that for her, also knowing though, that she puts her life at risk pretty much every day. So that’s my view of it. That’s not her view of it, but it’s certainly mine. But that’s her choice and her decision that has a grave impact on me and my everyday life. So I’m sure that will be the battle until the day she dies, because that’s just who she is.

View transcript

So I’ve been going to that group, I guess, almost four years now. They meet once a month and we take summers off. And the leader of that group is a therapist and her brother has MS. And I started seeing her privately as well, so she’s also been an absolute godsend. I think anyone who is caregiving needs to see a therapist. And not anyone though; it needs to be someone who is in line with your moral compass and your values and who you respect, and my therapist actually remind me of my mom a lot! But she is great. She has got me out of dark places and I don’t see her that often anymore because she’s given me the tools to do it on my own. But I still check in with her every so often. So that has been very, beyond helpful, that support group who—they are just my friends at this point really—and then, as well, the therapist. And then just surrounding myself with people who are up to having honest and real conversations.

View transcript

Developing a close connection with my mom. I think we have a bond. I think it can be unhelpful at times, but I’ve been lucky to develop the relationship that I have had with her, and it wouldn’t be the same if it weren’t the way that it is. I also feel lucky that I appreciate her so much because I feel like every day could be her last day on the planet. And so, I live every day as if she died tomorrow , already I’m okay because I’ve lived like that for the last 10 years, so I think every day could be her last day and I’ve said everything that I feel I need to say, and I honoured our relationship in a way that I feel okay with. […] So that’s one of the things my friends are always saying “Oh, you’re so good to your mom and you really know,” and it’s not something I wish on anyone to have to think like that “Like oh, my mom could die tomorrow,” every single day, “or today,” but it changes the nature of your relationship so you really appreciate that person.

View transcript

So that has been very, beyond helpful, that support group who—they are just my friends at this point really—and then, as well, the therapist. And then, just surrounding myself with people who are up to having honest and real conversations. So I think, at that dark time in my life, I wasn’t with people who could handle what I was going through. They weren’t in a place where they were centered enough to carry a little bit of my pain as well. And now, I just only surround myself with people who know my story and are open to having the discussion with me and offer me support. 

So, there’s a core group of people who have really been my family over the last five to seven years, and who I can call with anything, and who offer not only me support, but my mom support. And they’ve been godsends. And then of course, you always have friends who are just sort of fair weather friends, and that’s fine, and those are not people that I call in terms of when I need something, but they are still there. And everyone knows my story, and I think I used to sort of be a bit of a victim about it. And I think that just comes with age; I just have let that go; life is what it is, and I wouldn’t be who I am without all of this. So, I’m actually pretty blessed I think. 

But, just really amazing friends. And it can take a long time to find those people, and it took me a long time to feel comfortable in opening up to have those conversations. But once I actually opened up and started having those conversations, you realize that everyone has a story, and everyone is going through something, and everyone wants to feel closer and more connected to one another, and to share. And one of the biggest things, I think, about the world is that people don’t share enough. Because the minute I started sharing, the stories that came out were beyond—and actually my class of people in law school that I was good friends with, almost everyone had a sick parent; almost everyone. And I had two or three friends who lost parents while we were in school. If I’d only just bottled it all up and didn’t have a conversation, we’d all just be carrying it alone which would be ridiculous.

View transcript

I think it can be a really beneficial thing if you allow it to be. Again, I think it’s finding balance and knowing who you are and finding yourself and still taking care of yourself. I think, honestly, taking care of yourself first is the most important thing. It’s like when you’re on a plane and it descends and you need an oxygen mask, and you put your mask on first and put anyone else’s on second. That can be really difficult. 

And again, being a woman, I think that can be difficult. We feel the need to take care of others and take care of ourselves second. But [by] not taking care of yourself first, then I’m sure you’re not taking as good care of someone else [as] you could. So really, take care of yourself to take care of the other person. 

And healthy boundaries. I think that’s taken me just the last year or two. I’ve really learned what that means, and so sometimes my mom will call and ask for something and sometimes the answer will be no. I think that’s honouring her as a person to not just to do whatever she wants me to do. And she can be really demanding! I don’t have to be there all the time. I don’t have to be, and I shouldn’t be expected to be. I’ve sacrificed a lot and that’s fine; that was my decision and I’m happy to do it. It makes me feel good to know that I’m there for her and I can increase her quality of life, which is really […] my biggest goal. It’s just, to do whatever I can to increase her quality of life, but to a point. I’m not going to take away from my quality of life— sometimes I will—but for the most part, I’m not going to take away my quality of life to increase hers. I’m her daughter and she wants me to be happy. So taking care of me is really honouring me, and honouring her.

View transcript

I’ve never left the city because I’ve always been too concerned about her to leave. But I’m getting to the point where I’m 27 and I think have a right to live my life. She’s my mom and I know she wants me to live my life at the same time. So, I am toying with the idea of leaving, which is something I’ve always wanted to do. It’s hard because every day you’re trying to live without regrets, so you have to do whatever works best for you to ensure that you feel comfortable about the decisions that you make. But, I also think you have a right to live your life, and to be who you are—and that they want you to. One of the women in my support group lives at home with her mom, [and] has always lived at home with her mom. She’s a lawyer too actually. There are three lawyers in our group; it is quite weird. I don’t know what that is about. [She] lives at home with her mom and they have no help at all; she does everything. She does the groceries, she works 9-5, comes home makes dinner, gets the groceries, cleans the house— she does everything. And, I don’t think she’s serving her mom because I don’t think she’s helping herself. If you’re not taking care of yourself, then you’re not taking care of the other person. So, finding balance, I think, is really important. That took me a really long time. Before, when I was depressed, I just wouldn’t leave my house because I was concerned about her, and then I just started to resent her and her existence. So, I did something to change that, and also now we have support systems in place that allow me to not feel like I need to be there all the time. So, I’ve been lucky, but I think finding the balance is probably the most important thing. I think I’ve found a pretty good one.

View transcript

To watch someone fade away over 20 years is really exhausting and can be…obviously it’s more difficult on the caregiver because you realize that that caregiving is long-term, and you have to deal with that for an extremely long amount of time. So, it’s really hard and sometimes you wonder where the end is, which can be difficult.