In this topic page you can read about the health impact that caregivers experienced during and after their caregiving period. For most people, overall, caregiving seemed to have a negative impact on their physical and mental health. This varied from minor issues or symptoms to more severe episodes like being admitted to hospital for stress.
However, there were also some caregivers who did not notice any significant effects on their own health. Some caregivers described how it helped them work harder to stay healthy. For example, Anne said, “It makes me exercise more, eat better, try and keep myself healthy because I don’t want to end up like these poor people in these institutions and home.” And Jacques said, “Having to care for my daughter prevented me from ageing. It did not force me to age, it prevented me from ageing. This is the impression that I have. Because I am caring for her, I don’t have time to think that I am getting older or anything like that. I don’t have time.”
Why there is an impact on health
The caregivers we interviewed spoke about how caregiving affected their health. For example, they mentioned things like the heavy workload from managing caregiving and family life, sleep deprivation, feeling overwhelmed, stress, and depression.
Some caregivers experienced burnout at one time or other. Fernanda said, “I’m pretty much a classical case of caregiver burnout. There have been plenty of mornings when I woke up and I don’t know how much longer I can do it for.”
Then we would start the process of dialysis, hooking up the machine, getting the solution ready, hooking him up making sure that there’s nothing wrong with the lines and the tubes, and he would usually fall asleep, and then just making sure that everything was good.
Some caregivers noticed that they were smoking or drinking more alcohol than before. Kai spoke about how he smoked to deal with the stress: “And it was really ironic. I’m worried about his health but (for) most youth caregivers, we really don’t care about our own health because we’re too busy worrying about whomever we’re looking after, and this gets us through the day.” One caregiver described what happens when people try to cope by using alcohol: “It’s only a temporary measure because you wake up and the next day, and it’s still the same old stuff that you’re dealing with.”
Several caregivers developed back, shoulder and neck problems from physical manoeuvres that they frequently had to perform while assisting their care recipient.
I mean, 2 years ago I injured my back because I was helping him. He was at the point where he could still just barely transfer out of his chair into another chair or into the car, something like that, even on and off the toilet because he was still using the toilet on his own then. And initially it was just a kind of a little help and it got to the point where it was, I was really having to try and lift him. And that’s when I injured my back. And I simply said, “I’m not doing that anymore.” Any kind of transferring is going to have to be with homecare people, and otherwise, I’m just not doing it because it’s taken 2½ years for my back to start to feel as if it’s somewhat better, not back to where it was. And it is just such a risk to caregivers because you really do keep doing things until you injure yourself.
Caregivers mentioned other effects on their health, including increased blood pressure, high cholesterol, hives, stomach problems, headaches, ulcers, asthma, and palpitations. It was not always easy for the caregivers to find time and energy to visit their family physician in order to work out their own health issues.
Many caregivers spoke about increased levels of stress, anxiety, depression and burnout. For several caregivers, these problems had resulted in hospitalization at some point for stress. Some described having suicidal thoughts.
For sure that as far as my health, I’ve had some things. Well, I had to see the chiropractor three times for my back, but three times in three, in 30 years, sorry. And I had two operations for hernias as well—that’s related to handling heavy objects. But again, I relativize, twice in 30 years.
The caregivers we interviewed also spoke about other origins of their stress. They said that caregiving was stressful because “anything may happen”, “it’s nerve wracking”, or because “you have to hyper vigilant”. One caregiver felt that “caregiving is a constant worry and there is no more enjoyment.”
I think you sleep less and less, and the anxiety gets more and more, and the burden gets more and more. And sometimes you just have this overwhelming palpitations in your chest. It’s just like—you can feel it. You feel you can feel the pounding of your heart. You think your chest—you have pain in your chest always on the left side. You think it’s a heart attack.
I do know that I had been stressed out, this is—we’ve been here six years—five years ago, right after Bill had a heart attack. Sorry, it was before Bill had his heart attack. They call them anxiety attacks—your muscles hurt in here. And I had two of them. One was on New Year’s Eve and it would have been, it would have been ‘07, and it was New Year’s Eve and we were supposed to go out.
I went through many years, and it was really hard and very stressful on me, and I hit a point where they thought I had a heart attack, but I didn’t; I really had a stress break, a breakdown or a stress whatever. I ended up in the ICU unit for coronary care because they thought…and when they started talking to me, they realized that it was pure stress that had done that to me, and they made me stay in for a week, which was great because I just slept for a whole week. It was really nice. Isn’t that terrible? That you have to get to that point to take a break? And then after that, I started looking at it more, meditating, trying to figure out ways more to deal with things because it had been just too stressful for many, many years.
The stress and burden of caregiving was severe enough for some caregivers to have suicidal thoughts, just so they could escape their situation as a caregiver.
I helped her as much as I could up and down. And she’s a small woman and I am a small woman also, and I almost tripped helping her down the steps twice, and that scared me. And I also developed a lot of physical symptoms myself, of exhaustion and depression. And I got to the point that I thought I was losing my mind, and I considered suicide. And I heard of a crisis centre where I could go and spend 10 days, and meet with psychologists or psychiatrists twice a day; and for that you get lodging and meals, home-cooked meals, and just you could do whatever you wanted. You could sleep or read or watch TV, smoke cigarettes all day and all—well not all night. They had a curfew. And I went, and it was almost like a vacation to me because I didn’t have to think of what I had to make for dinner or cook it. But I had developed a stuttering—I was stuttering—and a tic in my eye and exhaustion and confusion and dark thoughts. Speaking to professionals helped me to maybe see more clearly and realize I needed more support.
I’m not depressed. I do go through suicide thoughts, and most of that is caused by I want to escape. I just want to get out of it. So I was advised to go for a 20-minute walk; not 10 minutes, it has to be 20 minutes and I have to get out of the house and relax.
Find a source of help. Psychiatry is good except that often there’s a wait time. You might, if you’re expressing a suicide concern, go to your doctor and perhaps you can get into see a professional sooner because of that. Don’t be scared to say that you’re, you know—if you’ve got a good doctor they will react. Find someone who understands it. Find someone who’s been there, done that. Again, probably through a support group or through this website you can find someone possibly who’s been in that situation. But don’t let it go long like my situation with feeling like I was drowning. Don’t let it go that far when you’re only hanging on by two strings. Get help when you recognize it and when you see it, and you know that there’s a problem and you‘re scared. Get, get some sort of help somewhere. Go to your doctor, go somewhere and get some help. Hopefully they can connect you with the right places, because it’s too hard when you’re getting too deep. But find some source. Now they have the Internet; you could find some sort of source. Talk to people that maybe know someone else that know someone else. But it requires a little bit of work, and a little bit of mental preparation, if you’re not too far where you can get to that point to get help. Like, don’t wait; get help right away, before it goes to a suicidal point or something like that.
Professionals advise that if you are experiencing suicidal thoughts, please contact your local suicide hotline or other resource as soon as possible. But if the thoughts persist and you are feeling desperate, we urge you to immediately go to the ER or to call 911. Do not let go, help is close by.
Many caregivers we interviewed had seen professional counsellors to help them through their most difficult periods.
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.
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 da