how i care for heart disease: 'there’s just so much uncertainty'
sven stuwe stepped in to care for his wife christina when she was diagnosed with heart disease. his advice to other caregivers? "if you don’t prioritize your health and well-being, it will take a toll on you as the caregiver and spill over to the person with the illness."
8 minute read
a solid support network and physical activity helped sven stuwe (left) manage the challenges of caring for his wife christina (middle). supplied
it is estimated that 7.8 million canadians provide at least 20 hours a week of unpaid support to their loved ones, and what it all adds up to is 5.7 billion hours of care, valued at nearly $100 billion a year, according to a new report by the canadian centre for caregiving excellence. the invisible, unpaid work affects caregivers both personally and professionally, and it often impacts their mental health, relationships, family dynamics and finances.
sven stuwe found himself in the role of a caregiver when his wife christina was diagnosed with heart disease. like many women, christina didn’t experience the textbook signs of a heart attack, but complications in pregnancy may have put her at an increased risk for the disease, according to data by the heart and stroke foundation. in an interview with healthing, stuwe shared his experience and revealed some of the challenges and setbacks they faced together as a family, including how they navigated the emotional and financial impact of caregiving.
this interview has been edited for length and clarity.
what caregiving support did you provide to christina?
chris and i have been in business together for the past 30 years. we have that 24/7 exposure to each other, and we’ve grown to accept our individual strengths and weaknesses. given her dad’s experience with heart disease, i knew that this was going to be a very emotional subject. as her husband, i felt it was important to be involved and to be there for her.
advertisement
being self-employed, we had flexibility with our schedule, and i was able to organize my day so that i could be present at doctor’s appointments. i’m an analytical person, so being part of those discussions allowed me to take in the information, ask questions and discuss them with christina outside the doctor’s office. i worked very hard to be the voice of reason and calm through the diagnosis, surgery, and recovery. i helped her grasp the information when her emotions took over. this is what i would advise anyone who is going through an illness do — have someone you trust be by your side, don’t go to the appointments by yourself. there is something to be said about having a second set of eyes and ears in the diagnosis and care.
were there setbacks?
when we met with the cardiologist, it was at that point where as a caregiver, i felt much more challenged and frustrated. the emotions were much stronger especially after the doctor had suggested that we wait a year, to see how christina’s symptoms would progress. there was a time in my life where i worked in the aviation field as an aircraft mechanic, and as you can imagine, if there was an issue with an aircraft, what you did was troubleshoot and test until you uncovered the problem so that you could fix it. until that happened, the plane didn’t go into the air. i questioned why this doctor was not doing more troubleshooting and testing, and i wondered what was holding him back from wanting to determine the cause of her symptoms. my training has been that, ‘you can kill somebody if you don’t fix the issue,’ and so from that standpoint, i couldn’t explain why the cardiologist wasn’t moving forward. i knew that not doing anything could have potentially killed christina, so we continued to push for more testing.
advertisement
that must have been frightening.
without question. that said, when christina finally received the diagnosis, the wait for surgery was equally nerve-racking. for me, there wasn’t a deep-seated fear, but it did create a situation where, every time i stepped out the door to see a client, pick up groceries or take care of something, there was always that moment where i thought to myself ‘not while i’m gone.’ my fear was that if something happened, i wouldn’t be there to help, although we did put safeguards in place like teaching our young son how to call 911, memorize our address and my cellphone number. it wasn’t always in the forefront, but there were moments when those thoughts would come through. even going to bed at night, i’d lie there and think to myself — i hope nothing happens tonight, i hope we get to have the operation. i did worry because i knew that while chris waited for her surgery, there was a potential risk for a major heart attack.
what was most challenging for you?
there’s just so much uncertainty around heart disease, and through it all, chris developed anxiety attacks. anything could set off the panic, including a new sensation in her body. i would have to talk her through it, calm her down, remind her what the doctors told us — that if it’s related to the heart, it’s always more than one symptom. i’d also ask her questions to try to distract her, i’d rub her back, hold her hand and tell her that she was safe and that she was going to get through this. for me, that was the most difficult part of caregiving because every day or two, chris’s anxiety would kick in. it was a ‘wash, rinse and repeat’ type of process. in addition to that, she wasn’t supposed to do a lot while waiting for her operation, so i took on most of the household tasks, while managing our business.
advertisement
who did you turn to for support?
i had a small group of people i turned to — my sister, my parents and two close friends. chris and i have very different personalities and to go through the emotional side of caregiving can be challenging. i have a tendency to rely on information to stay calm, but dealing with chris’s moments of anxiety was new to both of us. i had a hard time understanding and coping with it. there was frustration that would build up in me, but through all the years of training we’ve had in our business and throughout my career, i learned to keep my exterior calm, but i needed someone to vent my frustrations to and help take the pressure off. i didn’t want to put that on chris’s shoulders. my support system allowed me to do that, and when i would get back to chris, i could deal with her emotions and concerns again. the other thing that was helpful was staying active. bike riding gave me an opportunity to burn off some energy.
did you ever feel lost?
when i did my research, there was no real playbook on how to do this. as a caregiver, i often felt like i was making it up as i was going along. there were people in our wider circle who tried to be positive and supportive by telling us that everything was going to be fine as chris waited for heart surgery, but often times, it felt like they didn’t understand what we were going through — they didn’t grasp the severity of the situation. it didn’t help us feel supported because there was still that spectre of potential death and this ongoing sense of ‘what if she has a massive heart attack, will she make it?’ there wasn’t anything out there that was helpful advice to caregivers, but instinctively, i did the best i could based on what i thought was the right and most important thing to do.
advertisement
how has caregiving impacted you financially?
we’ve worked in the financial industry for the past 30 years, and being self-employed, there was still a bit of a financial impact, but not to the same degree as an average couple that may work for an employer. i couldn’t work at the same level as i had done previously because there were responsibilities that i needed to pick up in the household that chris wasn’t able to do. luckily, we had residual income that took care of most of our expenses. when i think about an average couple where the caregiver can’t continue with employment, i don’t know how they make it work. and even those who have to work through their loved one’s illness, in the best-case scenario, that couple would likely experience a 30 to 50 per cent pay cut depending on how much income the person who is dealing with the illness brought in. caregiving can have a tremendously large financial impact. i don’t know how we would have survived a 50 per cent pay cut. we would have had to dig into our cash reserves and retirement plan. that would have been horrible especially since the eight-month period before and after heart surgery left chris incapable of doing any work.
what advice do you have for other caregivers?
advertisement
know your options in terms of any support structures and emergency services that are available, so that you don’t feel alone. it’s also important to have an emotional outlet. a caregiver needs to find ways to release emotions and relieve the ongoing stress. have respite so that you can get a few hours to yourself, go for a walk, see a movie with a friend, get away from the situation and decompress. if you don’t prioritize your health and well-being, it will take a toll on you as the caregiver, and inadvertently, it will spill over to the person with the illness.
what have you learned from this experience?
the biggest learning came from attending the rehabilitation workshops with chris — it not only helped her feel less alone but hearing other people’s stories gave me an opportunity to better understand the deep-seated fear of mortality that comes from a heart disease diagnosis. it was eye-opening and disheartening to hear so many tragic stories of how long it took to get the diagnosis and how long it took for these women to be believed. there seems to be consistency in that, and one has to ask the hard question: why is this happening to so many women and what can we do about it?
advertisement
do you have a caregiving story? email info@healthing.ca.
maja begovic is a toronto-based writer.
thank you for your support. if you liked this story, please send it to a friend. every share counts.
share story
