Fernanda

Fernanda
Age at interview
49
Age at start of caregiving activities
37

Fernanda (49 years old) is married and lives in a city in Saskatchewan. She works full-time and visits her mother frequently in the long-term care facility where she lives. Fernanda’s mother (80 years old) was diagnosed with renal failure about 12 years ago. She requires dialysis three times a week and, due to other accidents, lives with persistent pain. Fernanda always accompanies her mother for her dialysis sessions.

When Fernanda and her parents immigrated to Canada and went through stringent medical tests they found out that her mother had chronic renal failure. Six years after this diagnosis, Fernanda’s mother had to go on dialysis and the doctors expected her to live for only two more years. She had a kidney transplant one year after the start of dialysis but then developed several medical problems associated with the transplant. During this period, Fernanda’s father died of a heart attack. Her father had heart problems before but also being a caregiver added to the stress. 

From then on, Fernanda had to combine her full-time job with her mother’s care, including the dialysis and her regular care. Her days consisted of being a caretaker at home, going to work, going back home during the day to attend to her mother’s needs and picking her mother up from dialysis three times a week. It was too stressful for Fernanda to combine her work and care as many of the tasks were often to be performed concurrently during the day.

It was only after her mother had a serious fall that Fernanda accepted that her mother could no longer remain at home and arrangements were made for her to go to an independent living care facility. This situation lasted for seven years until Fernanda felt she needed to change to a long term care facility after another fall. Fernanda then had to advocate strongly with the health care professionals for her mother to be placed in a long term care facility. This was one of the toughest things she had done in her life by accepting and indicating clearly to others that she was no longer able to continue to care for her mother in such a way. A significant turning point for Fernanda was when an emergency room doctor told her that she had done enough and that it was now time to let other people take care of her mother. She is still grateful to this doctor for making this decision, which made it easier for Fernanda to move her mother to a long-term care facility. Fernanda explains that she has often been able to find excellent medical services for her mother but that she also remembers with sadness the times when she felt the services were not responding to her mother’s needs.                      

In spite of all the trials and tribulations with her mother’s illness and care, what affects Fernanda the most is to see her mother suffering from continuous pain caused by several broken bones and a dislocated shoulder that can no longer be operated on. Fernanda’s caregiving has not remained limited to her own mother. She finds it painful to see elderly people left alone and tries to contribute to their lives by volunteering in her mother’s long-term care facility and in the hospital’s patient group. She also sits on two patient/family advisory boards for a Health Region in Saskatchewan. Notwithstanding her own challenges with caregiving, Fernanda has become part of a larger caring network.

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Having been a caregiver for so many years, I’ve learned that you got to learn to have some fun. But sometimes it’s hard, because when everybody else is having fun, you’ve got to go to the nursing home, you’ve got to take care of mom, or when [my mother and I] were living together I couldn’t just leave her alone. So, it wasn’t easy to just get up and go have some fun like everybody else. My life isn’t what everybody else has. My life is a hospital 6 times a week. I go in the morning and in the afternoon. It’s nursing homes. It’s constant hospitals because of the crises. Sometimes it feels like all that surrounds me is illness. Sometimes I feel like I just go, go, go, go because of my mother. It almost feels like the day she goes, I’m not going to be far behind her. I always joke with her and say, “Don’t worry mom.” She’s going to be burying me long before I bury her. That’s how sometimes it feels.

People always say, “You need to go to the gym. You need to take time for yourself.” You know what my first answer is? “At what time? At 2 in the morning?” Because I have a husband. My husband, he works shift work. […]He does so much himself. He works 4 days on, 4 days off. So on 4 days off, he really takes care of everything, but on the days that he’s working—and he works 12-hour shifts—I’ve also got to come home and take care of him. Somebody’s got to come home and take care of the dogs. So, it feels like we just go, go, go. Is there time for friends? Is there time to go to movies? Maybe once every 3 months. There’s just no time because when there is time, I am so tired. So tired that all I want to do is pass out. I just want to go to sleep all the time.

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What the renal unit had which was a phenomenal source of support for me—and I don’t know if they still have it or not—was when shortly after dad, shortly after dad died and after mom went back on dialysis and I was going through a really tough time, really tough—I was trying to juggle the job, mom’s appointments, I didn’t know if she was going to, trying to deal with the grief of losing my dad, I don’t know if she was going to make it or not—and I was just really, really overwhelmed. And, her name was [name of social worker], and she was a type of a social worker, and she would come and see me at my work for an hour. So I’d take my lunch once a week and she would come and talk to me. And there were times there when I don’t how I would have done it, because she gave me the skills. By talking to me and by making suggestions and understanding. And whenever I had these feelings and I’d say, “How can I be feeling this?” the words out of her mouth were always, “It’s normal. You’re okay.” When you don’t feel okay, when you don’t feel normal, she was a huge support for me and, again, this was by the health region and I don’t know whether they offer it anymore or not—I don’t think they do. And she, in turn, her husband got cancer and she became a caregiver, so it’s funny how the wheel sort of turns around.

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Because I’ve always taken care of my parents. Where I come from, that’s what we do. We don’t just give our parents away. We, we look after our parents. So for me to have to admit to myself that I wasn’t able to, it was very hard number 1. Number 2, it was very hard for me to leave her in a nursing home where there are people with dementia. My mother is full mental capability: she can have, she discusses politics, religion everything. For me to leave her, I thought I was abandoning her. And she was so much more accepting than I was. She was the one to sit me down and say, “This is the way that life is. It’s a next stage of life for me, and you have to accept that.” And so she did it more because she didn’t want to see me cry, I think, because it was hard. I can’t even explain it. I don’t know if it was I just felt like I was betraying her, abandoning her, and I didn’t want her to feel that. Because what I wanted for my parents was to be able to give them the very best that I could give them for the last years of their life. They lived their whole life for me to put me through school, to educate me, to…we lived 2 countries, we emigrated, they went through hell and back for their kids, and that’s why they did it. They immigrated to better places so their kids could have a better life, and so the least that I could do was to try and give them a better life.

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It’s another life. You always hear of people, you always hear of people taking care of their parents or their sick children or anything—that it’s everybody else. And when you’re in there, I’ll tell you what, it has, it’s opened, it has taught me so much.  And I have to say that 13 years of this disease of my mother, my mother’s taught me more in 13 years of watching her than in the first 13 years because she is an amazing—she gets on my nerves, but she’s an amazing woman. She, no matter what the pain, she’s courteous and she’s strong and I can only hope that if ever it happens to me, that I can have her dignity and be half the person that she is, because she’s an amazing woman.

She’s endured so much, so much.  And you know how they say your parents always teach you “treat everybody with respect”? […] But it’s one thing to say it. It’s another one when you watch them actually do that. And not once—those nurses that we’ve known for 13 years—not once when they’re putting a needle in, she doesn’t say, “Thank you very much.” Or we take cake for them, or because when she goes, she says, “Bring them some donuts,” [...] because they work so hard. So, there’s always a “please”, a “thank you”. We’re trying to make life easier for everybody else, but in the meantime it’s, “No, don’t worry about it. My daughter will do it.” So the daughter’s the one who ends up by doing everything. That’s still me.

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So, I called the client advocacy office and they were phenomenal. But then I think they knew I wasn’t, she wasn’t going to leave there. As my name is Fernanda, my mother was not going to go back home. 

And spoke to them and we basically tore that whole, that whole 5th floor medicine, we tore it apart. And we then asked, requested, a change of physicians and which they did. Well, he came and he said, “I have approved your request for a change of physicians, but my colleague,” the other guy that was on the other floor wouldn’t take my mother on. So now, they’re leaving a woman who’s had major heart attack, mini strokes, a renal patient, with no attending physician and no pain meds because now only another physician can put her back on any kind of meds. 

So, to the client advocacy office again. And I said, “This is just unacceptable.” And again they were amazing, amazing. They got hold of the nursing home doctor, managed to do a conference call with the nursing staff at the unit and put her back on what she was on before the fall. So at least she had that, even if it wasn’t much. And then the new physician came two days later. And phenomenal, right from then onwards. So, mom stayed in the hospital for another two weeks. But once again, my mother had me to advocate for her. What about those people that have nobody? And that’s what’s pretty frightening. So that’s been—the thing with the dislocated shoulder and the […] incident—that has been the not so good experience, and it’s actually been a very frightening experience because I never, in 13 years of dealing with hospitals, I never thought I’d go through this, never.

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What the renal unit had which was a phenomenal source of support for me, and I don’t know if they still have it or not, was when shortly after dad, shortly after dad died and after mom went back on dialysis and I was going through a really tough time, really tough—I was trying to juggle the job, mom’s appointments, I didn’t know if she was going to, trying to deal with the grief of losing my dad, I don’t know if she was going to make it or not—and I was just really, really overwhelmed. And, her name was [name social worker], and she was a type of a social worker, and she would come and see me at my work for an hour. So, I’d take my lunch once a week and she would come and talk to me. And there were times there when I don’t how I would have done it, because she gave me the skills. By talking to me and by making suggestions and understanding. And whenever I had these feelings and I’d say “how can I be feeling this?” the words out of her mouth were always, “It’s normal. You’re okay.” When you don’t feel okay, when you don’t feel normal, she was a huge support for me and again, this was by the health region and I don’t know whether they offer it anymore or not—I don’t think they do. And she in turn, her husband got cancer and she became a caregiver, so it’s funny how the wheel sort of turns around.

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Please understand that, even though your life, maybe that you’ve never had to take care of anybody, that it is extremely hard to take care of somebody and have a job. I’m not asking that employers say, “Okay, you’ve got to take care of somebody, so you can have all this time off.” No. I’ve never been like that. Whatever time I’ve had off, I’ve worked it in. If I’ve taken an extra half an hour at an appointment, I have worked in that half an hour. I’ll come back in the evening and I’ll finish my work. I try to leave everything. A lot of times I can—I used to go in at 2 o’clock in the morning while mom was in hospital. I’m not asking for freebies, but I think the people that have a job and have to run people to appointments because there’s no one else—I mean just nobody else—and you can’t put them in a taxi or expect them to catch a bus because they’re too sick to do that, or they don’t know the language… is please have some understanding what’s it’s like. Because when I was told after my dad died and my mother and […] they told me that my mom had about two weeks to live if she didn’t go back on dialysis, and I was told—and not by the employer—that business is business and no one really cares, that was a big shock. Because you know what? It’s true. As long as people, businesses, are out there to make money and everything, and so it’s just really, really hard.

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And then in that week she basically, not even one, it took more than one person to help her and so that week I did the toughest thing I’ve had to do, one of the toughest things. I went to the hospital and I said to them “Look, I just, I can’t fight anymore. I don’t have the capabilities of helping her,” because I was the one, even though she was in this independent living which was a condo—it was just for seniors, so they had a common area in on the ground floor where they would go and eat, but she had her own little apartment— so I went there and I used to go there before work pick her up for dialysis, drop her off. And I’m the one going to clean. I’m the one wash the clothes, I bathed her, I’d help into the shower and everything.

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You asked me of my frustration—what was the negative? And perhaps it’s also very big negative impact was that how many people are so ignorant about the caregiver’s role. And if more and more people can become educated…everybody feels it’s always about this person [who has] got cancer and is dying, and the thing about being a caregiver is that I am now not just… when I hear that, I turn to the other person—to the wife, or to the husband—and say “And how are you doing?” And you know what? A lot of them burst into tears because no one’s ever asked them that. So if there can be more of an awareness of what it is that caregivers go out there…what they go through, what they experience. If they can be heard, if there can be somebody to take the time to hear what they go through and the toughness it is for them, perhaps this will…perhaps it gives caregivers…it can give a caregiver the thing of “I’m not there alone”. And so, even though today’s a really bad day, it’s okay. Like, I can make it through that day; I’ve just got to do it one minute at a time, one hour at a time. Just like everybody else, we all want to be heard.

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So my escapes are my holidays and I’ll go hiking. And when I go hiking, I try to go up 8,000 feet above tree line where I can stand on top of a mountain, and just that’s when nothing matters. That is when, I don’t know if it is because you’ve got to hike to get up there, so you’re hiking up and you’re working your frustrations, you’re hot. Maybe that’s what it is, but that’s the time when I replenish myself. It is those 2-3 weeks out of the year that, and even then it’s tough because the… and this is a horrible thing to say, but and I feel guilty even saying it, but you know what? When I’m above tree line my cell phone doesn’t work. And so, there’s no phone calls from mom, because she phones me every day. She phones me five to six times a day. There’s no, I don’t have to go to the hospital twice a day. I don’t have to see other people that have no legs, no arms. I just, for those two weeks, despite that fact that I phone my mother every day, that just gives me a bit of a reprieve.

And the good thing is if anything happens, the nephrologists have known mom for so long, for so long, that they basically know like we have a “do not resuscitate order” on mom, because if they had to, they’d crush the sternum. It would be a lot worse for her. And they will know, they know what’s best for her, and they all know what her wishes are. But that’s my biggest fear, is that I’m going to come back from a hike, from a day hike, and there’s going to be, I’m going to phone and they’re going to say, “You need to come home. Your mom’s gone.”