Joanne

Joanne
Age at interview
54
Age at start of caregiving activities
43

Joanne (54 years) is widowed and has two grown children. She is the primary caregiver for her mother; they have lived together for 10 years. Joanne works part-time as a social worker. Her mother has multiple chronic health problems. Joanne and her husband became actively involved in the care for her mother after her father died. They invited her to come and live with them, as they were worried about her living in her own apartment. Shortly after, Joanne’s husband died unexpectedly. Her mother needs increasingly more assistance but is able to stay alone when Joanne goes to work.

After Joanne’s father passed away 10 years ago, her mother came to live with her and her husband. This was the best solution at that time as they were worried that her mother would be unable to return to her own apartment without assistance. Joanne’s husband died unexpectedly, shortly after her mother had moved in. As they were both widowed they initially supported each other, getting to know each other better. This resulted in the healing of past wounds. The challenging part was (and is) to deal with her mother’s anxious and insecure personality.

Joanne’s mother’s condition has deteriorated in the last 9 years due to many health problems and the usual ageing process. She has changed from being a relatively independent person into someone who needs a great deal of personal care. She overestimates her own abilities and takes risks that sometimes lead to falls.

Joanne works four days a week and feels lucky to have a flexible workplace which enables her to hurry back home if she needs to check on her mum. She worries about the eventual possibility that her mum will need more intensive care and that she may not be able to go to work for a couple of days or longer.  

Until now Joanne has not had any personal help at home. They were recently offered help with one shower per week for her mother from health and social services. Her mother does not think that they need this, as her daughter is caring for her; it will be a challenge for Joanne to discuss this with her mum and tell her that they do need this help. Joanne sometimes feels like unpaid hired help.

Joanne’s mother’s care-needs have increased, the situation is getting more and more difficult and Joanne’s stress is building. She took two months off work due to burn out in the last year. She would really like to go for a holiday for one week this year and hopes that one of her brothers will provide support so that she can go. Her sister is a great help and listens to her concerns, but lives in another country. She tries to come overseas twice a year to help.

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Friends and family around, I would advise don’t assume that because everything looks like it’s going okay that it is. […] To say, just to say, “Let me know if you need anything,” usually doesn’t work very well. Usually to be much more concrete than that. “Why don’t I come over for an hour and you go out for a coffee with your friend,” or something concrete, to just offer it, to just be there. Just offer something very real, not vague might make the person feel more at ease about accepting it, especially if they’re not used to asking for help. And also, listening sometimes can be a huge help. There’s sometimes not too many people who can really understand what you might be feeling and going through, and allowing a space for someone to vent can be really helpful. That’s what it was after my husband died. Sometimes very good friends would say, “Well, we don’t know what to say,” and I said, “Just say, ‘I’m sorry. I’m thinking about you. I’m sorry,’ And just let me talk. Sometimes I just need to talk. Just listen.” “Okay, I can do that.”

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To other caregivers, don’t burn out like I did; take care of yourself. It’s okay to take care of yourself. The analogy is of the train, the locomotive in the front that’s pulling the whole rest of the train. You have to give yourself some fuel. Otherwise that stops. So, if it can help to think of it in that way, that you’re doing it for the other person to make you feel you can justify it. That’s not necessary, but if it helps that’s okay. And like for me, I think I learned the hard way that I can’t push myself… I can’t push myself to the limit every, constantly every day all the time, that you know my body will end up saying, “Whoa! We’re not supporting you anymore until you make some changes here.” Like, my body really gave me that message. It just shut down as if like, “No we’re tired. We’re not getting up. We’re just not moving.”

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My social life is more and more and more restricted because of the change in her situation. It’s something I also do to myself because sometimes I don’t prioritize my own needs as well as I should. I tend to just keep going, going, going. I have a meditation class I go to, little things like that, but I tend to minimize my own needs for her, thinking more about her: “I should stay home because I’ve been at work.” She’s been alone, I feel guilty going out again, that kind of thing. There’s some that’s related to her, some of it that’s related to me, allowing myself to take care of myself.

I’ve made some changes. I can’t change who she is or how she thinks, so I decided that I would include myself in thinking about what’s important today or what’s the priority for this week. I’m in there too. If it’s important for me—going out for a long walk in the forest is, makes me feel fantastic— that’s a priority. It’s essential. It’s not a luxury and I don’t have to apologize, because sometimes when I tell my mom I’m going for a walk, “Oh, you’re so lucky. I can’t walk anymore”. I just don’t say, as I say, “I’m out, I’ll be back in an hour.” So, I stopped feeling twisted up about it. I just do it. There’s one course that I’m taking just for my own interest. So, I’m doing that. Those may sound like little things, but they’re big. They’re big because I’m thinking more in terms of what do I need?

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But in terms of help in the home, that establishment doesn’t have any budget right now; they’re not giving anything. So at home, there’s no caregiver, there’s no home support, there’s no nothing. So, it’s either me, or you pay. And to give you a concrete example of that is we’re still on a waiting list for some of those things and this week there was a phone call from someone from that establishment, who called my mom to say that there was a space for help with a shower once a week. And my mom said, “No, no. My daughter does that for me.” And I just wanted to scream because it was, “Okay, maybe you don’t feel that way, but think about me. That’s one less thing to have to do, and it could be such a nice thing to have an extra shower and make your arthritis and your back feel relaxed.“ So this week, that’s where we’re at—this drama over the shower.

So that really is frustrating because she doesn’t see herself as needing help, and, I don’t think, is really aware of my fatigue. So I took the risk this week in talking about that phone call with her after and saying, “It would be a good idea to say yes, because you could be sick, you could be sicker. You’re walking now, but it might change. It’s not a good idea to say no, and then that request gets cancelled and you have nothing.” I said […], “I will help you with your showers, but when I come home from work, I’m tired.” I am tired. And she did not react to that very well. And that was very hurtful because I feel like hired help. Sometimes I feel like unpaid hired help. And I do it willingly. I’m happy to help her and I’m happy to have her around, but I don’t see having people help as a negative thing and it will be more and more necessary as her medical situation changes, and I’m really terrified of having to deal with that. Not so much that those things will be necessary, but her reaction to it—it’s like walking on broken eggshells with her, and deep down, it makes me very angry, because I feel quite used and neglected.

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I work 2 different jobs; one is 3 days a week and one is on the weekends. It averages out to 4 days a week. Just last year there was the possibility of another job that was 5 days a week, but it would be very fixed hours. That was a position, that particular position I was really interested in professionally, but I wouldn’t go for it because it was 5 days a week and because it was rigid hours. There’s no question of taking off lunch to come here; I wouldn’t have time. I’d have to strictly be in a certain timeframe and it would not… And if ever she is not well, I’d always having to be taking time off probably, whereas the position I have now I, it can be flexible because when I have appointments with people, I make those so I can organize and consequence. So that would have been a really interesting job to have, but I didn’t go for it because of my mom really basically, yeah.

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I think my mom is really lucky to have someone like me, who’s so devoted to her. I think sometimes she realizes that, and she tells me she appreciates it, but I look ahead to myself when I’m her age and I’m thinking, “Wow, what’s my situation going to be?”, which makes me think.

[…] Personally it’s been a huge learning experience. I think the fact that I became closer to my mom during this time, and some old hurts, and everyone has some in their family with their parents. There are things that are resented or previous things that happened, so we really had a chance to go forward a little bit. And that’s a good feeling because I feel that when she does pass away, we’ve come to know each other, not mother/daughter, but as people a little bit more. The other lesson for me is just in getting to know myself a little bit better. And I think it took the experience of getting to a burnout to make that really hit me—to see to what point I will push myself without taking care of myself. That, I can really do that well and that’s a real danger for me, with huge consequences. And that’s for me to explore the reasons why I do that, why I’m motivated that way, and what’s influencing that—that’s me. I think I have come a long way with that, and just seeing how that theme runs through me, and to begin to make some changes—like, I have been trying to make sure that I am part of the agenda, and in little ways maybe. Someone else listening to this might say, “What? She goes for a walk? What’s the big deal?”

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But as she gets less autonomous and more fragile that changes, where there’s a lot more demands on me every day concretely. Just the managing of all the appointments and the doctors and the follow-ups, and there’s a lot. It just it takes a lot of time and none of those things alone in and of themselves are so difficult; it’s not so difficult to help someone dry your toes after a shower, it’s not the end of the world but it’s the accumulation of all those things. And there’s always ‘got to be on,’ ‘got to do this,’ ‘got to do that,’ and it’s like I feel guilty for being annoyed sometimes because I know she can’t open a jar. She’s just called me, she’s having difficulty with that, she’s asking me to help with that. All these little things, they’re all reasonable but it’s an accumulation of stuff I have to do and take care of all the time.

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In our situation it, things as much as possible need to be in home. There are respite, there is a possibility of respite, but it would mean she’d go into an establishment for ‘x’ period of time. I would like that, but I know that this would kill her. I mean, that symbolically, like, she doesn’t even want somebody coming to help her with her bath in her own house  for once a week. She’s not going to go for a week and stay in a long-term care facility. So I mean, the drama we’ve had about the bath, I can imagine bringing up “Why don’t you go away for a week? So that I could have a break.” I can just imagine what that would be if I insisted, if I really insisted on that, which I could do, she’d have to because as a caregiver I can say, “I’m not doing this  anymore.” I have that choice. But it’s a very difficult position to be in. I’m not sure that that’s one battle I would want to fight with my mom.