Hélène

Hélène
Age at interview
58
Age at start of caregiving activities
51

Hélène (58 years old) cares for her husband (55 years old) who has been living with cancer for seven years, mostly at home. Hélène has worked on and off during this period depending on her husband’s illness and treatment regime. They have five grandchildren, their children and relatives live in another city.

Hélène’s husband was first diagnosed with cancer seven years ago and given three months to live. This was devastating news for both Hélène and her husband, but he survived this initial phase to continue treatments for various cancers and changes in his illness over time. For several years, her husband had treatments in a different city every three months. These were very difficult times for Hélène who lived in a small motel near the hospital. Most of all, Hélène finds his unpredictable mood changes hard to live with, primarily caused by the number and strength of medications he takes to manage his pain. As his disease progresses, Hélène’s husband’s treatments alternate between palliative and active treatment, and the drug therapy has become stronger with more side effects. Hélène has excellent relationships with the physicians and health professionals involved in his care. Modifications to prescriptions can be made over the phone in discussion with doctors. 

Hélène’s immediate family lives in another city, so although supportive in general, they are unable to offer much hands-on help on a day to day basis. Hélène has been very resourceful and creative in devising ways of recording and reminding herself of things to do in caring for her husband, and in ways to find support for herself. For instance, early on in his treatment, she started to carry with her a small book to record appointments, write down questions and answers when they spoke with professionals; they now call this ‘the blue book’ and it has been enormously helpful in resolving debates with her husband about what was discussed and what was agreed as he is sometimes confused due to his illness and the treatments. She has also learned to speak with drug companies who have often helped to pay for some of his very expensive treatments. Hélène has recently joined Facebook and discovered many old friends who have been an enormous support for her. She and her husband participated in a recipe book project for cancer patients and families which they really enjoyed.

Hélène does feel that the burden of caregiving for her husband has taken its toll on her own health in terms of weight gain, no time to exercise, depression and fatigue. Overall, however, Hélène feels being a caregiver has given her permission to be kinder and more forgiving of herself and others, and to look for the fun in everyday life. 

For now, Hélène and her husband are enjoying their grandchildren and family, and work hard at remaining positive each day. Hélène has been a strong advocate at the political level to address concerns about her own situation, such as in a letter-writing campaign to MPs to argue for reimbursement for expenses despite being 10kms short of the accepted range (and won), but her hope is that policies and support services available to caregivers and families will improve.

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Ask questions. Ask. The worst is you’ll be told no. But if you don’t ask, you don’t get. That took me a long time to figure out, but the squeaky wheel gets the oil. It does. And you don’t have to squeak annoyingly; you can squeak nicely and it still works. Ask the nurses questions, ask… go to your library if you can. Go to, depending on the type—I mean, if it’s dementia or if it’s multiple sclerosis there’s always associations that will help you to a point, but they can’t do…, but they might steer you to the right place. I just recently, in fact yesterday, found out about an organization called “We Care” and I that was on the net. I don’t know how I ended up there, but some link that came through something else and they had a booklet for caregivers.

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I just opened up [the pamphlet for caregivers] and the funny part was “taking care of yourself”. And that I had a problem with—what [is] “taking care of myself”? I’m not going to go to the cinema. I don’t have the money to go to a spa every weekend. And, in “taking care of yourself”, they had “take a nice hot bath”, with bubbly whatever. That helps. And, they have a Facebook [page], and I went “Ah wow.” […] They were suggesting, “reconnect with old friends and you might be surprised what you’ll learn.” And it’s true. The other one was simple things; read a book. We tend to think everything has to be big and we’re in a society of abundance. So, treating yourself could be like, “I’m going to change my hair.” And that’s fine, but it doesn’t have to be that. It’s doesn’t have to cost.

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I have insurance; we are lucky. And I also learned that if you talk to the drug companies they will help you.

In what way? Do you have examples of this?

Yes, I do. He had and he’s had injections for 2 years now. The injections are $3300/month and this treatment he has comes out—we figured out in medication we’re giving the pharmacists $180,000/year. Yeah. And the insurance doesn’t cover all. Like after 2 months, we were on catastrophe coverage. But if I didn’t have the job I have. If I didn’t have insurance I don’t know.

So how have the pharmaceutical companies helped?

Yeah and that’s one information I would like people to know. They will help you. Because some of the drugs are so much. And go to their website. Ask your doctor who makes it? Look it up. They usually have patient help programs. See if you qualify. For us, the first couple months we paid a certain amount of [what] the insurance doesn’t pay. […] The insurance covers after a certain amount, before that they don’t. So, the company helps to cover that gap. So. we send them the proof that we got this at the pharmacy, this is what we paid on it—it’s the 20%—[and] they will send us the 20% later. So you’re kind of out-of-pocket for a little bit, but you get it back.

And have you experienced that with different companies?

Yes, but they won’t tell you.

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Because if you travel to get medical care not available in the area, it has to be 150 k—or whatever for example—and we’re 10 km below. And I remember I wrote—like, you know how the CSSS for the region? […] So, I have written them and I said, “Well, this is pretty ridiculous,” that when he had the operation for the tumour, I had to pay to stay at the cancer house because I had to be near there and I had to eat and we had to park, had to take a train actually because I don’t drive in. All sorts of expenses that were our own. And […] my sister actually is a nurse and said, “Well, maybe you can get reimbursement for the train. Inform yourself.” I didn’t even know I could have that. So, I write them they say no. So, I write back again and then I write—I start, I went crazy—I wrote the MP, provincial, federal, the lot, everybody. I was like outraged. This is ridiculous. 10 km? I’m going to move to [town in ON] and that’s going to give me my 10 km. Come on, be reasonable people. And in the end, they reimbursed me for that.

So persistence pays off a little bit?

Yeah, but then I have been writing. I spent a long time the other—not this last election, the one before—I wrote every person in the federal that was party leader, “What are you going to do for me?”/

Any replies?

Some replied. Some never did. Some, I will write 10 times, they will never reply.

And the ones that did reply was there anything useful in their reply?

Yeah. Actually, it brought on that they are changing some of the compassionate care so that it can be—but that too I got help from the lady at the Canadian Cancer Society. We prepared a lot of material, we prepared a lot of interviews. Actually, the Liberal party had come up with a caregiver plan, and they were quite receptive to it. But well, they didn’t get there. But still, I had somewhere in there halfway through with the London story and with all that, I decided “This is crazy. I’m lucky. What is it when you’re not?”

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So he was in the hospital and caught C. difficile. So that was the first four months of being a caregiver. So of course I could not work. I used up my vacation, my sick leave, my anything leave, and then went onto unemployment—on sick leave for me at that point because you have to have a reason; they won’t give it to you just because you’re caring for somebody. You don’t get anything.

So that lasted maybe—he was diagnosed in November; I went back to work in March and five days/week was not feasible at that point in time too because he was starting other treatments. So what helped at that point was I have an elderly aunt who offered to take him to the treatments and pick him up after. And then the treatments were all day long. So he was in the hospital at that point I could keep on working. It’s after when he’d come home and it’s finished, then he was very ill all the time, so I would take a week off after a treatment […] like, on and off, and on and off, and on and off, which meant that I used up all my vacation time up until 2010.

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The first doctor, in fact at first, my husband was not at ease with him; he didn’t really like him; thought he was too cold. And he went to him and spoke to him and said, “Look, I’m not patient #1235. I am a person; I am not a statistics. So, I would like you to treat me as a person.”

He said that?

But he said that very nicely […] and he said, “I’m sure you’re very good, but this is not what I need right now.” And you know what? Now they meet, they have their own signals that only them know and their own private jokes, and once in a blue moon I show up and just like 2 little kids really. But that too you have to learn to speak for… you have to be your own advocate, as the caregiver and as the patient.

And have you had generally great interactions as a caregiver too with healthcare professionals?

Yes, yes. They appreciate that I’m there. They know me by now anyways. They know I come in with my blue book. There has been times where, “Ah non, je n’ai pas mal,” and I’m looking at the doctor going [shaking my head], because it depends your angle—you learn where to sit in the room. And then they will ask some more questions by them or they will say stuff. But talk to me indirectly so that I will know what to do.

So you generally felt part of that scene?

Oh definitely, definitely. And a lot of them have given us their e-mail address so we can communicate directly that way. Others, it’s a phone number and we’re in communication right away. It’s amazing. It’s really amazing. And well, everybody’s been really, really incredible.

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That’s always a bit tough, and that’s another thing we don’t learn anymore. I know that my mom took care of her mom—my grandmother died at home. And in those days, and she’s seen a lot of people dying in those days, and it was something that was part of life. Now, it’s not. We don’t want to talk about it; we hide it. If you go to a funeral parlour you don’t see, you don’t know anything anymore. I think just maybe knowing that perhaps I will be there…until there, so that I don’t panic, I would like to have more [of] what to look for. How do I know? It’s okay, but how do I know? How do I not panic [about] the person that I’m looking after? How do I make it easier? And I know, you know?

It’s like when my mom got sick, I went to see her at the hospital and she was supposed to come out, and I said, “No, she’s not coming out.” But, I worry about that sometimes. Be prepared too. Like, you have to talk, you have to know your finances. You have to know what the person wants, without just living in the future. You still have to have your basics, so that when you’re in that state, that’s taken care of. You don’t have to waste energy on that. You can focus on something else. That has changed my perception, and yeah, I do wish it wasn’t such a big mystery, because it is part of life. And maybe if it was more part of life, we wouldn’t be freaking out as much as we are now. And I don’t know.

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That’s always a bit tough, and that’s another thing we don’t learn anymore. I know that my mom took care of her mom—my grandmother died at home. And in those days—and she’s seen a lot of people dying in those days—and it was something that was part of life. Now it’s not, we don’t want to talk about it; we hide it. If you go to a funeral parlour you don’t see, you don’t know anything anymore. I think, just maybe knowing that perhaps I will be there…until there, so that I don’t panic, I would like to have more [of] what to look for. How do I know? It’s okay, but how do I know? How do I not panic [about] the person that I’m looking after? How do I make it easier? And I know you know. It’s like when my mom got sick, I went to see her at the hospital and she was supposed to come out, and I said, “No, she’s not coming out.” But, I worry about that sometimes. Be prepared too. Like, you have to talk; you have to know your finances. You have to know what the person wants, without just living in the future. You still have to have your basics, so that when you’re in that state, that’s taken care of. You don’t have to waste energy on that. You can focus on something else. That has changed my perception, and yeah, I do wish it wasn’t such a big mystery, because it is part of life. And maybe it was more part of life we wouldn’t be freaking out as much as we are now. And I don’t know.