The people we interviewed experienced a wide range of reactions from their family and friends. A few caregivers felt their group of friends remained the same. In general, however, caregivers saw their friends and family less often than before. There were also several people who did not receive any support at all from family.
Marc, who became a caregiver for a friend, feels the situation has been well accepted by his friend’s family, his wife, and his own family: “People are open, welcoming, and we have good links.” Similarly, several other caregivers felt that they had the support they needed. Val, for example, said, “We had the best network of friends and family ever. They’re just awesome. We had people that were coming to see us when Dave was well who stopped [seeing us], but the real friends and family kept coming. They kept coming day after day, weekend after weekend, never forgetting Dave.”
It was more common though for certain members of the family to be very supportive while others were not. Lillian’s sister, for example, developed a special relationship with Lillian’s son and does an amazing job looking after him. Many others caregivers spoke about a particularly supportive parent, sibling, child, or sometimes aunt or cousin.
Several caregivers we interviewed were only children or adolescents when they started caring for a parent. These young caregivers are often called "youth caregivers". They told us about similar experiences with family and friends. Kai, for example, received a lot of support from friends and family; their home became like "Grand Central Station" just before his father passed away. People were coming and going, and people brought them everything they needed.
Rachel's father is not involved with her mother's care and she often feels she is caring for both of them.
Caregivers also received support from their own children. Although some remained uninvolved, many people's children were quite supportive, or at least understanding. Hélène, for example, said that her children supported their father in an exceptional way: "They all decided to have babies because he wanted grandchildren. So we got five. It seems whenever there's, 'Oh, there's nothing left,' there's a baby. But now, they closed the family channel I think."
Not receiving support from family
In some situations, caregivers have less support from family for practical reasons. For example, Christiane's husband doesn't have any children or siblings that can provide support. Also, if family lived far away, caregivers often received less hands-on support.
Some of the caregivers we interviewed felt abandoned by their family and friends, which was very painful for them. Some did not understand why certain people disappeared from their lives, or never helped care for their family member.
Anne, who cares for her husband and daughter, had two very contrasting experiences. When her daughter had an accident, friends and family were very supportive. With her husband's illness, however, they seemed to have disappeared.
Several caregivers were taking care of a parent, but received little help from their siblings. Often, this resulted in feelings of anger, abandonment, and betrayal. Barbara's sibling, for example, did nothing to help with caregiving. But when she came for a monthly dinner with her mother, she would receive all the adoration. Barbara had to learn how to put that aside.
In some cases, the families' interference became a very negative experience and it even caused additional stress and worries.
Support from friends
Most of the caregivers we spoke to had at least a few supportive and understanding friends. At the same time, many caregivers generally saw their friends less often after they started caregiving. Several caregivers also had understanding neighbours who provided support. The Smiths, however, noticed that their friends were less available because they too were in caregiving situations. David's group of friends did not vanish; in fact, they still help out a fair amount.
Asking for help
Asking for help—and even receiving help—was sometimes difficult for the people we interviewed. They often mentioned reasons like "I don't like to impose that on her", "I am tired of asking", or, "Why take away his freedom? I feel bad." For example, Marlyn explained that she is less likely to ask her neighbours at 11pm for help, even if homecare was unable to come.
Several caregivers explained how they had to learn to be more comfortable with asking for or accepting help.
Rowdyneko said, "The people out around you feel helpless too. I feel helpless all the time, but they feel helpless too. And [my sister-in-law] felt really helpless, particularly because of the distance, and she said […] 'What can I do?' And I said, 'Stay in touch with me.' So every single Saturday since, she has sent me an e-mail about her week and asked me how my week was. And I've actually absolutely loved it."
You can visit the topic page Advice to family and friends if you would like to read more on this topic.