The support caregivers received from their family and friends varied a lot amongst the people we interviewed. At one end, some had reliable people that provided practical and moral support in a variety of ways. At the other end, some received no support or understanding at all. This was sometimes a sensitive and emotional issue for these caregivers. Some were in difficult situations with their family; others simply had no friends or family available to help. Some caregivers were also less comfortable than others when it came to asking for help or accepting it. In general, even a little bit of help was better than no help. We asked all participants what advice they would give to family and friends of caregivers who are caring for a chronically ill person. In particular, the caregivers spoke about how family and friends could best offer their help.
Offers that caregivers appreciated
Caregivers especially appreciated practical, reliable, and steady help offered by family and friends. Richard advised that friends and family listen to the caregiver and identify some positive things, or a specific action, they can do for them. Richard’s wife’s friends once came over as a surprise and did a spring cleaning. Like Richard, many caregivers were pleased with specific actions or help that people offered.
The people we interviewed gave many practical suggestions on what kind of help people can offer. Anne’s husband’s cousin came to stay with Anne’s husband so that she could go away for two days. Anne suggested that people can come over and socialize with the care recipient, but they should bring dinner so that they give a real break to the caregiver. With regards to the children of the caregiver, you could offer to do activities such as taking the children out, bringing them for a picnic, a sleepover, or offer to bring the children to their sports activities.
Other specific recommendations were to bring dinner, do grocery shopping for the caregiver, help in the care for the care recipient, help with cleaning, and help with transport to medical appointments or errands. Mrs. Smith described how a family could work as a unit to help each other. And Shayna recommended scheduling caregiving time among the family so that the caregiver could plan to do something constructive. For some caregivers, keeping a list of ideas of ways others can help them would be useful.
It is particularly helpful when people specify what they are willing and able to do, and perhaps unable to do. Rowdyneko explained that the burden of the caregiving is so high that, often, she cannot plan ahead in terms of what she needs: “I don’t know what today’s date is, much less what I might need help with.” Other caregivers described that it is hard to reach out to friends and family even when they have offered help. Shayna advised people who are offering help to not pull back once the offer is on the table. This will make it even harder for the caregiver to ask for help again. One way to decide what kind of help to offer is to think what you would need yourself if you were in a similar situation—or, as Claire suggests, don’t be afraid to ask how you can help.
Socializing with the caregiver and care recipient
Caregivers typically experience a significant negative impact on their social lives, and become less visible in social settings. For example, several caregivers mentioned that when they meet people, the attention is usually turned towards the sick person and how they are doing. Caregivers appreciated it when people took an interest in them and asked, “And how are you doing?"
Caregivers or their care recipients may not be able to participate in many social events, and this can have a significant impact on their lives. Caregivers suggested that people should continue to call them, go for walks with them, pop over and make a tea, or simply visit the caregiver. Lorna, for example, appreciates it when people are just there for her and have a listening ear.
Support without judgement
Some caregivers ask that friends and families be careful not to criticize or judge the caregiver. Christine said, “Don’t judge. Because you don’t know what it’s like until you are actually living it. Don’t criticize [a caregiver]. You have to help them and acknowledge that they’re doing something important, and that it means a lot to you that the caregiver is caring for someone you love too.”