In the topic pages on ‘society and caregiving’ and ‘adapting to new roles’, caregivers describe other peoples’ reactions and expectations towards caregivers. A common assumption is that caregiving, although challenging, is mostly rewarding and fulfilling, and that caregivers take on their roles willingly. Caregivers often feel that others don’t understand their situation and may judge them harshly for what they do or say. For example, caregivers may feel it is looked on poorly to go on holidays alone or have their care recipient placed in a long-term care facility.
Caregiving can be tiring, overwhelming, and challenging. Thus, caregivers naturally experience negative feelings along the way. Most of the caregivers we interviewed experienced both positive and negative feelings over time. Please visit the topic page Personal growth and transformation to read how caregivers describe the positive influences of their experiences on their lives. On this page, you can read what kinds of negative emotions the caregivers experienced, what they thought about it, and how they dealt with these kinds of feelings.
Several caregivers felt it was important to speak openly about the negative feelings that caregiving engenders. They wanted to reassure others that these feelings are normal and that they are not alone: many other caregivers feel the same way.
Hopefully to support other caregivers that know…they may look and try to find out “are my feelings normal?” There were some days where I would like to put a pillow over my husband’s head and just make him be quiet. And yeah, there’s days like that.
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.
Several caregivers were living with a care recipient who was mentally affected by the illness. The behaviour resulting from the illness was sometimes problematic and this was challenging for the caregivers. Matsonia, for example, said, “I was so hurt. I was so angry. I was so mad at him because he insulted my intelligence, and that’s what made me so mad. And yet, he couldn’t help it.”
Feelings such as fear, guilt, frustration, anger, feeling stuck, and lack of patience were feelings that were described by many caregivers. Others described feeling annoyed, alone, or envious. We will describe the experiences of the caregivers with some of the most recurrent and challenging feelings.
Several caregivers experienced feelings of guilt, for different reasons. Some found it difficult to take time for themselves and felt guilty about doing so. Rachel said, "spending time [with my care recipient] is exhausting, it's exhausting. So I used to feel really guilty about that." Richard said, "I certainly carry some guilt in the sense of when some episode would happen and I'd realize 'Oh my God, was I pushing things?' you know? If we went somewhere and we tried to do too much and then [the care recipient] had an attack or she just was totally worn out. And I realized I always have to watch, and I always have to have a plan B."
Anger and frustration
Several caregivers described feeling angry at their family and mostly with their siblings, because they were not helping them as much as they had expected. David said, "The most negative is when I get frustrated because I lose my patience, and I get frustrated and angry. And that happens unfortunately probably more than not, so that would be the negative part". Anne has felt angry and frustrated with her husband's doctor. She said, "I just got so frustrated with the lack of care. Like, they just didn't care; it's a lost cause as far as they're concerned." Several caregivers described how, in moments of anger, they had asked themselves "Why me?"
And I remember once… I’m on my way to see her at the hospital at lunch time or in the morning, because then, that was the time when the doctor was doing his round, and it was possible that she might be getting discharged and all that. So, I arrive at the hospital, and then, she tells me, “Ah! I’m really not feeling well this morning.” My wife was there, she had been admitted four days about, three, four days—and she said, “I feel worse now, in any case, I feel less well than when I arrived at the hospital.” I said, “Oh! It’s not going well.” And then the doctor comes to do his round, and I was there. And she starts telling the doctor, “ I feel worse, I have more pain and all that.” And the doctor says, “Yes, yes…” And he does his exam, and asks her this question, he says, “Are you ready to go home?” Yes! That’s it! I had as a reaction, “What is this? Did he listen to anything this doctor?” It gave me a strong enough reaction and I talk about it and it still has an effect. And then at that moment, well… she said, “No, not really.” He said, “Yes, we will try to keep you still, but…” in any case. And then, she needed her personal effects, some stuff for work as well, so I went back home to come pickup what she needed. And I went back to see her, but I was at that moment in my transit of… leaving the hospital, going home, and returning to the hospital. Like, I was having an emotional reaction… but really very…
Yes, very intense. I didn’t have anything left. I was… I was raging! I was yelling! I was crying, and that’s something, that never happened to me! Never, never! And then, I was having an enormous reaction… No, but it was just this event that sort of triggered something. And then, I returned, I went… Then I told him, “Listen, this isn’t working. It’s not going well.”
A few caregivers spoke about being pushed to a limit where they risked doing harm to the care recipient. For them, this highlighted how important it is to recognize when you or someone else is reaching the limit of being able to cope alone as a caregiver, and may need professional help from a physician or counsellor.
As well, some caregivers spoke about how support groups were helpful, as they could share their negative feelings and strategies for dealing with them. Val spoke about one of her group meetings: "There was one lady in particular—she was maybe 10 years younger than I was—she said 'I'm going to kill him…. If he doesn't die on his own, I'm going to kill him.' And I thought, 'Right on. That's exactly how I'm feeling.' Today it's exactly the same and when you go to the support meetings. You get to know how other people deal with it."
I think there’s a point where you can become so frustrated that no matter how caring you are, you’re going to help a little too hard. You’re going to, and that should be a signal to get a break. I know that was true for me. Just, it’s normal, it’s natural. You need to know it’s normal, you need to know it’s natural, and you need to back off. When you live 24/7 with illness your emotions are going to reflect in little ways at some point, and I think that’s very important because you neither want to be the abuser and you don’t want somebody abused. And you know it, it but the anger—the anger at the illness not necessarily the person, the anger at what used to be your life and isn’t, the anger at how people treat you, the anger of life affects you long-term. Again, I don’t know, but I don’t think it’s true in a short-term caregiving relationship. But when you’re talking about years, decades, it’s a different dynamic and I think that’s a very important piece.
I mean, I considered myself the optimum of caregivers. I considered my, and yet I can honestly say, I’m sure that there was a time or two when I helped just a little too hard. Because of everything that was inside—I didn’t hurt, I didn’t abuse, but that is abuse. It is abuse. It’s not abuse as we see it, but if it’s a, if I had the wherewithal to know I needed to get out of the house and go for a walk or something, but if you don’t have that insight into yourself, it’s a very slippery slope.
So I think for some people, the ill person might be safer left alone, and having them take a walk around the block than continuing in that anger towards the illness, towards whatever it is. The emotion, the bubbling over of emotions.
Well I’m sure my husband didn’t realize I helped a little too hard. Yeah it didn’t happen often, but I would be a liar to say it never happened.
Several caregivers also felt fear, especially that something may happen to the care recipient when they were away. For example, some worried about the recurrence of a medical event. Christine said, "And it just, when my best friend was telling me, 'You're not yourself anymore,' and I was just too tired and scared of my thoughts and not having a future of my own, and my mother's condition and falling…having an idea that I would fall down the stairs with her."
But slowly you learn it was fear. The first few nights, I could not sleep when he came back home, that it might something happen. So it was a very scary situation. I didn’t know […] what situation is really kind of…what you call…most serious, because you do get some kind of pain and chest pain, but they didn’t do a surgery that time, there was no surgery was done.
And funnily enough, I had called—I call her every day—I called her that day and I hadn’t heard back from her and I always get really concerned when I don’t hear back from her because every day I don’t know what’s going on.
Some caregivers spoke about feeling somewhat stuck in the situation. Fernanda said, "When I think about the things that have gone wrong, or when I think about the times when I'm feeling resentful, or I'm feeling 'How much longer do I do this for?' Or because, you know, being a caregiver, it doesn't matter if you're sick. I have to be there whether I'm sick or not. And it's just, sometimes I just feel really alone. Because I've such a wonderful husband, but the truth is nobody can talk the talk unless they've walked the walk." Several caregivers spoke about the extent of their distress leading to suicidal thoughts. You can visit the topic page Impact on health if you like to read more about their experiences.
Several caregivers were confronted with moments where they lost their patience or felt they did not have enough patience. Mrs. Smith said, "you need the patience to deal with it, but at some point in time you lose the patience."
Lillian said, "When there's that kind of disconnect emotionally with somebody, it's very hard to continue to kind of give, give, give. We've come to understand him in a different way. I still keep coming and giving him a big hug. He doesn't like it, but it's just that's something that I have to do."
Dealing with the negative feelings
Having some negative feelings and emotions is normal. However, when these feelings start affecting your day-to-day life, then it may be a good idea to find some help, such as seeing your physician or finding someone to talk to, such as a professional counsellor or at a support group. If you like to read more about other caregivers' experiences with support for themselves, you can visit the topic pages Information & links and Caring for yourself.
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,
Now, outsiders might look at you and judge you, and that's a very difficult position to be in—where you feel as if you should be able to do some things, but you can't, but other people might judge you and sort of say, "You're a nasty person, uncaring person making your spouse go into a care facility because you don't want to have to deal with this." And I thought that I was probably more alone in thinking the way I did until I was in this group, and everybody feels the same way. Even people who are nurses who deal with this on a daily basis in their profession, have having to clean people who had bowel incontinence problems for example, and they say the same thing.
I know most caregivers feel a lot more negative emotions than people would think. Often outsiders will look at a situation and they'll feel very sorry for the person who is ill or disabled and understandably, but they often don't see the impact on the caregiver as well. And when we took that course at the MS Society, one of the questions the […] facilitator asked was "What was the one emotion that comes to mind when you think of yourself as a caregiver?" And she was anticipating positive emotions like caring, loving, and I don't know what… those sorts of things. And to a person, everybody in the room—and there was about maybe 15 of us there— the emotions were all negative: frustration, anger, depression, whatever. They were all negative. And it surprised me that that surprised her, because she was a psychologist or a psychiatrist, I can't remember which. So it surprised me that she was expecting more things about "Oh, I'm so grateful that I can do this for my husband," or whatever. I don't know what she was expecting, but she wasn't getting it.
And that's one of the reasons that the caregiver support group is so valuable. And if anybody who is a caregiver and isn't in a support group like, that I strongly suggest that they find one or start one. Because, if nothing else, it's just other people who understand what you're going through and you can blurt out all the negative feelings that you're having at that time—frustrations or whatever—and feel that it's going to be understood. People aren't going to just kind of say, "Well, just imagine what your husband's going through."That kind of thing, or, "Just be lucky the shoe's not on the other foot!" or whatever some of these responses might be.