The people we interviewed noted that caregiving had an important impact on their social life, lifestyle, and/or family life. Some felt that caregiving definitely enriched their lives, sometimes in unexpected ways.
Absolutely. The young people that we have met, they are just so wonderful. And we actually have something now; we’ve instituted something called family dinner. So every Wednesday, because our older son and our nephew who lives with us are home—they don’t work, and they’re not at classes on Wednesday night—any of the caregivers who want to come will come for dinner.
Some caregivers spoke about being able to maintain very active social lives. For example, Elaine maintains a busy social life, partly because she became actively involved in the Parkinson’s support group. Marc and his friend take part in a lot of social activities and Marc feels he would not be able to do without socialization. On the other hand, many caregivers had fewer social activities when they took on more caregiving responsibilities. For some this was okay, but for others it was problematic. Donovan said, “I feel very strongly inside of me that I desperately need socializing and I’m not getting it. Because we’re isolated at home, very isolated.”
I guess I’ve cut back on a lot of things myself now. And because he’s not driving anymore, he wants to go and do his exercises. The Parkinson’s have an exercise class so I’m not doing my own. I used to go swimming, but because it conflicts, the time is not good. I’d say it’s changed, […] but I get up early now and I walk instead and just try and work around it. But I do, I work one morning a week. I volunteer at our 55+ Centre, the older adult centre, and I really like it. I just love it because I keep my skills up. Different people, 4 hours of just… and it’s a happy place. So I haven’t quit that, but some of my other things I’ve quit. Like through the church and stuff like that, I don’t do that anymore.
Yeah, I used to volunteer for the Magnus Theatre, a little theatre group here. And I enjoyed that, but it’s at night and he’s so tired at night. I was just finding it too stressful to go and leave him. And I’m okay with it because I’ve done it for about 20 some years and it was time for a little change. So, the things that I have quit, I’ve been comfortable with. So it isn’t, I don’t feel put out about it.
Several caregivers felt that they did not have a social life anymore. For many years, all Anne did was work, come home, and look after her kids. Now that she is older, she notices that she doesn’t have as many friends because of it.
Reasons for a reduced social life
Caregiver’s social lives declined for several common reasons.
He would criticize… if we had someone here, he would criticize something I might have done. Lately what it is is I’m not doing things the way he would do things, and it’s like, “Big deal, right?” Like, it’s not a big deal. But it is to him. I don’t word sentences the way he would word them. He’ll say, “You mean this,” and I say, “No, I mean what I said originally” because I’m not wording it the way he would word it. And these are little things, but this is what it’s coming to. And he will criticize things when there are people here and that’s very embarrassing for me because some people will tell me later, “Oh, he was very harsh to you,” or something. Some people will say—it depends on how well we know them—some people we don’t know well and I’m worried what they’re thinking. It sometimes affects our social life. Do I want to pursue a new friendship with another couple? I don’t know because that makes me very nervous…because it’s not something I share that he has this illness right away. But if they don’t know it, they wouldn’t understand his actions as behaviour. He can be a lot of fun when we’re with another couple, but he can also be a little rough around the edges. And do I want to take that risk of introducing a new couple to our social circle? I have to think long and hard before I do that. I have to decide if I want to prepare this couple for what he has. Because he also lately, he just says things straight out and doesn’t think about the other person’s feelings. He didn’t used to be that way.
Several caregivers simply felt too tired or too busy to be socially active. You will be able to read more about this in Caring for yourself.
Matsonia said, “I give him his meds at 7:00 in the morning. And so, I make all our appointments for the morning because that’s when his mobility would be the best. If I have a dinner party, that means people come over at 11:00 and we have some drinks, some wine, or whatever, and we sit down and eat at noon and then they leave by 2:00 in the afternoon because he starts turning into a pumpkin after 12:00 to 1:00.” Another caregiver, Rachel, made new friends that were more understanding of her situation as a caregiver.
I have no… tolerance, I guess you would say, for people who have minor problems and whine about them. And that affects my relationships with a lot of people, because they’ll be whining about something that’s like really, really minor. And yes, it’s a problem for them and I understand that, but if I only had those problems I would be jumping for joy.
Effect on lifestyle and family
Several caregivers started caring for a family member, a spouse, or a child while raising young children. Some of these caregivers expressed concerns about what effect the caring had on their children.I
So I don’t think my experience as a caregiver is unique. I think a spousal caregiver has a very unique experience as compared to a child caregiver. I think the children, young children, go through hell and don’t realize it and don’t know how to cope with the nice things that people say that are all wrong; that are terribly guilt-ridden, riding, imposing, guilt imposing on these children. I had to teach my children that it’s okay to say “no” to their father, who would call them every 2 minutes to pick up a pen that dropped or get something. It’s just, you can’t do that to a child; they’re not your caregiver. That’s a whole different piece. And you as a mother watching this—seeing how it affects your children, seeing how your children are so ambivalent between wanting to help and hating to help, and how it affects them—and trying to deal with that, that’s a whole different volume.
Lillian: But I think having a disabled person in a family network—so what do my siblings or his siblings think about our situation and our son?—because I think when you think about caring for older adults, like when you care about your, when you’re caring for your parents who are aging as caregivers, there is a whole set of factors that emerge, right?
Several caregivers describe how the caregiving affected their own lives and personalities. Kai, for example, was still very young when he cared for his father and he feels he has become socially awkward as a result of spending much of his time with adults and not with friends his own age.
Some caregivers appreciated the opportunity just to be alone once in a while. Joanne said that it is a nice idea to have the house to herself for one day: “I’ll probably do all the same things that I always do, but I’m alone. I can yell, scream, jump up and down, watch TV all night if I want, whatever, just dance around my living room. But I would be alone. It’s just a luxurious feeling to be alone in my own house.”
Many caregivers also noticed changes in their lifestyle that impacted their health, such as eating unhealthy foods or smoking. You can read more about this in Impact on health.
Friends and isolation
Over time, most caregivers experienced a reduction in their number of friends. Many caregivers felt that the illness made friends disappear. When Shayna was planning her son’s wedding, she realized that she had a third fewer friends to invite to her son’s wedding compared to her daughter’s wedding which was 7 years earlier.
Because people don’t want to come over, it’s not interesting! Him, he sleeps. And you, well, you have thing to do when he’s sleeps. You take advantage to do the things that you can’t do when you are—when he is awake. Because “I want this”, “I want that”, “come sit”, “I’m tired of seeing you move around”. So, friends distance themselves, so you don’t have a social life anymore.
You can read more on the caregiver’s experiences with Support from family and friends.
Caregivers experienced isolation in different ways. Rowdyneko felt emotionally isolated, commenting that others did not understand unless they had had a similar experience. Similarly, Mrs. Smith felt that she had nobody to turn to, and decided to go to the local caregivers group.
So that was part of my culture, I mean, so that’s our duty. My sister-in-law came from USA to help when my mother was in the hospital. I never even thought of that I could go out to get any help for her. I say, “Well, we are supposed to give help.” That’s all I knew, that’s all I knew at that time.
To us, not being able to go? I think, yeah, I think at first it’s a new experience for them too, right? Just like it was for me, it was kind of like, “Oh, okay. This is a problem.” And I think the ones that have accessible homes feel really happy and excited and lucky that they can make it work.
Some caregivers explained that they had started inviting people to their home more frequently as it was easier for them to receive people at home. Shayna also discussed the importance of being invited to social events even if the care recipient cannot attend.
Weddings. Ho ho! Married off both my children. For my younger children, for a number of reasons, the wedding was far from home we had to travel yet again. In retrospect, I don’t know how I did that—how we got this multi-handicapped person to this place—but it was great and we did it. For my son’s wedding, he wound up in intensive care the week before the wedding. And my son came to me and said, “It’s my wedding. Everybody’s going to ask me about dad. I don’t know what I’m going to—how am I going to cope?” So, I decided since I had my husbands’ Power of Attorney, I wrote a letter from him basically—people don’t know how to act, so you need to tell them. By then, I was older and a little bit more experienced, so I wrote a letter that I asked the father of the bride to read to everybody who was there, saying that this was my son’s celebration, to please not discuss me with anybody, but make this day a joyous day with joy. And I had hoped by giving people that direction and having her father read it, that people would then know what to do. And for the most part they did. There were a few people who—I had one gentleman who came from out of town—he was even a doctor—who came up to me and said, “This is what you have to do. Dah, dah, dah, dah, dah.” And I said, “Please this is not the time.” “But I have to tell you.” And I said, “But this is not the time.” “But I’m leaving town tomorrow!” and I said, “This is not the time,” and I just walked away. But I couldn’t have done that 20 years before, 15 years, 10 years before. You grow into this role and you learn to realize that nobody’s going to get it anyway, so you’ve got to do what you’ve got to do. And for me, that was making my husband as independent as I could, functioning as a family as best as we could, as normally as we could although normal is a relative term.
Negative? What would they be? Well, the negative aspect, it’s obviously that we are forced. That is of course when you have a child like that, sometimes you are not free like you would have been otherwise. But, that is what I find the only negative point. That’s it.
We have a real large circle of friends that we still keep in touch with, have breakfast once a week with a good number of them. I used to give dinner parties all the time and I’m finding that I’m giving less and less and less dinner parties. Because by that time of the day, my husband’s not functioning very well and that puts great stress on him to have people over for dinner.
Many caregivers found great support in local caregiver support groups. You can read more about this in the topic page Resources or find local caregivers groups in the Information and links section. In Caring for yourself you can read more about how the people we interviewed looked after their own well-being.