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.
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.”
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.
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.
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.
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.
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.
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.
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.