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.
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?"
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."
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."
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.