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.
Oh a friend that will come over and say, “[My husband] always wants to clean out his eaves troughs. Have you had them done lately?” And I’ll say, “No,” and boom they’re doing it. I’m a very proud person and when I’ve got somebody phoning and saying, “Tell me what I can do for you,” I very often say, “Well, there’s nothing. I’m fine.” It’s those simple things that kind of get overwhelming.
And I’ll use my family. So as much as I’ve said, one of my siblings is not involved in the care routine at all. That doesn’t mean that that individual can’t be involved in the caregiving situation. So, not involved in the care situation, but definitely can be involved in the caregiving situation; i.e. recognizing that if I have to miss a… if I miss a family dinner, it’s okay.
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.
Yes. What is helpful is specifics. Don’t say, “If you need me, call me,” because the caregiver probably will not call unless they’re older, and it’s not taken as a sincere invitation. It just isn’t. Calling up and saying, “I’m bringing dinner at 7 o’clock, let me know if it’s inconvenient?” Or before, as I said, my son… my husband was in the hospital in intensive care before my son’s wedding, and a friend came over—and I’ll never forget this—and said, “I’m not leaving until you give me a list of things to do. I know you must be going crazy for the wedding. You give me a list, and I will just take care of it.”
You need to be specific. Take the children out. We were a religious family, so we sit separate in synagogue. If my husband couldn’t go to synagogue, my son was alone. So unless somebody is there to be a pseudo parent, it’s horrendous, it’s horrendous for the child. If somebody isn’t willing to be a big brother, or “come with my family,” or whatever in terms of worship, in terms of the holidays. Be specific. Think of what’s not happening and offer that. You’re going grocery shopping; call up, “I’m at the store. What can I pick up for you?” “Can I do your car pool?” Or get together with a group if there are young children. That would have meant the world to me—that car pool on top of delivering my husband to work and getting myself to work. It doesn’t even have to be all the time, just once in a while. I remember once, I had gotten my husband in the car and I was struggling to get the wheelchair in the trunk before we had the accessible van, and a stranger came by and said, “Please let me do that for you.” No one had ever done that for me. I just stood there. The feeling, the euphoria I got because someone picked up this wheelchair. Just look and see what’s going on. Carry groceries into the house. There’s so many little ways you can help a family in this situation. You just have to look and think, “What would I do in this situation? What would I need in this situation?” But be specific and don’t give the onus to the caregiver. “Call me if you need something.” That’s horrendous.
The support that I find is the most helpful is when friends actually get it and they say things like “I don’t know how you do it,” or “It must be really hard. You deserve a medal.” Like, just stuff like that. Or when they do something really nice for me, like if they take me out for dinner or something like that. That’s always nice.
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.
Other caregivers, I’d say avoid it like the plague. Oh, it’s probably the worst thing I’ve ever done. It’s just because it’s so much not my personality. I shouldn’t say that; it’s totally discombobulated my life. I think for friends and family though, to stay in contact because sometimes I just don’t have time, or sometimes I am just feeling so overwhelmed by things that I go to ground. Like, I just don’t have the energy to phone someone. I don’t have the energy to reach out to someone, but on the other hand, if someone was to pop over and make me tea, or phone me up and say, “Let’s go for a walk,” I would be probably really happy to do that. But I don’t find people do that. Maybe it’s just the people I hang out with. And that could be because, again, I’ve always been a fiercely independent person and I think maybe some people are afraid to step past that now because they know I’m really independent.
Don’t exclude the couple because of a physical barrier like if that person was in a wheelchair and they can’t get in your home. Perhaps you could spend time in the yard. They could possibly get in your yard for the evening instead of inside the home if there’s steps involved, washroom problems, that type of thing. Let them say no. Offer it. Let them say no. Let them decide if they want to attempt this.
And if it’s not possible for the ill person, don’t discount the well spouse. “We’re having this get together with so and so and so and so. If your husband isn’t able to come, would you like to come?” Let that person decide if they want to join in. A lot of people aren’t comfortable going solo, but some people are, and don’t make that decision for them. Invite them. Let them decide and let them say yes, or let them say no. Don’t exclude them. Invite them out to a movie or whatever without the spouse. Give them some time to have some social life separated from the ill spouse as well. I think you need that interaction as well. I find it’s very hard to get an ill spouse out to go for coffee with someone else. Whereas a well spouse would probably love the idea of getting invited out to do something away from the home.
And actually, I joke about that, but it’s true. Actually, one of Luke’s family members just bought an accessible home and she was just about to move in in about a month. And that was one of the biggest thrills of our life because there’s only two other family members’ home out of all of our extended family that we can get into.
Support without judgement
Well it’s a combination of things, I think. One is definitely just listen and speak to the caregiver—because we’re focusing on caregivers here—and let them talk, and don’t offer solutions.
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.”