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 examples, 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.
The support from my husband’s side of the family, in my opinion, was very poor. My husband comes from a large family. There are eleven children in the family. There’s a couple of them that are great because they’ve had their own experiences with illnesses. The rest are oblivious to what this illness involves and that type of thing. His parents are both deceased. His father passed away when the illness, I think, was only a year or 2 old. So, his mother was elderly, but she was a caregiver because she had a mentally challenged child. So, she was wrapped up. Her support was concern for a son kind of thing. My family’s side was probably a little bit more understanding. My father had an illness and my mother had to deal with that for a long time. So, she was always concerned and she understood when I needed to get a break, get away kind of thing. She understood that. My sister is supportive, as she’ll invite me if it’s something that my husband wouldn’t go to because of heat or whatever. She will still invite me. She will offer it to me, and even though she and her husband could be going to this or whatever. It could be couples going to it, but she will still give me the option of saying “Yes, I want to come along” or “I don’t want to come along”, which I appreciate so much because, often, couples won’t invite us if they know that my husband can’t go.
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.
On my dad’s side, he’s not in the picture. He wanted nothing to do with me throughout my life up till I was three years. And then he got remarried, and then he had something to do with me. He wanted a boy. He was there for the labour, and then after the birth, and then after he found out that it was a girl, he took off. That was it. He didn’t take care of me whatsoever.
I get that a lot, particularly around the fact that I’m a male—and I’m a young male to boot—and that I have sisters. So, when people learn that I [give care to my mother], the next question out of their mouth is, “Well, why aren’t your sisters doing this?” For me, the reality is this: I think it, as far as the choice thing goes, it’s to each their own to some degree.
Caregivers also received support form 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."
I haven’t really figured out how to get around that, because I so dislike the whole caregiving thing. And I think in some ways, my husband hasn’t figured out how to get around that either because he knows that I’m not happy doing this. I mean, I try and do it. I don’t complain. And somebody said to me the other day, “Well, you never complain about this.” And I’m going, “Well, what’s the point? There’s no point in complaining; it’s just what I have to do.” I mean, no choices here. So, not much point in complaining, not going to change anything. But I’m sure my husband would tell you there are times—like, I don’t do it willingly; I do it because I have to, and I’m not really that happy admitting that. I mean, it’s true, but I’d like to be doing it because it’s so much fun, or it brings you closer or…No. I mean, I don’t think that’s true. It’s not true for me anyway. I can’t stand any of that stuff. I mean, I’m really lucky that I have my kids because my oldest son is… Honestly, every day he just surprises the heck out of me. He’s just so completely—and my husband’s like this too actually; I’m so glad he got that gene from my husband—is so completely unselfish. And so, he will go in there, he can go in there and he can cut his hair and trim his beard and stuff. I can’t stand doing that stuff. If I was absolutely pushed against the wall, I would do it, but fortunately he just does it. And he doesn’t mind. He goes, “Well, I’ll just bring my razor in and I’ll do dad’s.” And the other day, he reminded—he wasn’t just reminding me—we were talking about Christmas and some of the issues around Christmas and he said, “Well, you know what? It doesn’t really matter what anyone else thinks. It’s what Dad wants, and what Dad feels about it.” And that’s just completely his attitude, which I find absolutely amazing because I have a hard time. Intellectually, yes, I agree with him. But on the other hand, I go, “Yeah, but what about what I want?” And when you’re a caregiver, that does not factor. It doesn’t matter what you want, not at all. And that’s hard to take sometimes.
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.
I feel like through most of it, we never got much support from anybody. Not family. The family disappeared. Everybody was there in the very beginning, and then the family just disappeared. And I mean, he has a brother who lived ten minutes away from us. He visited us maybe once a year. I haven’t seen them in, I don’t know, five years now. He has one brother who didn’t visit him either, but eventually now that he’s older, he starts to visit him every couple of months maybe. So, he was kind of isolated, everybody kind of drifted away and didn’t bother with him. And I’m at work all day, so he’s alone a lot of the time too, so it’s a hard part for him too.
I was really shocked that his family disappeared. His brothers, I thought they would be there for him, but they weren’t there for him. Even my family, I mean, they tried to support me, but nobody ever offered to come and stay with him so I could go out. Nobody, nobody wanted anything to do with it really. I guess because it was a horrible situation and they want to pretend it’s not there. But no, it hasn’t been a positive [experience]. Some people might think they have a positive experience, but I didn’t have a positive experience at all.
Have you ever asked for help to these friends or family or have you?
He has a really nice cousin. He actually came twice. But when you ask people—like even with him—I felt like I was inconveniencing him. Like, “Yeah, okay. I’ll do it,” kind of thing. Nobody said, “Yeah sure. We’ll help out. We’ll give you a break.” Nobody’s ever done that. Never ever, nobody. So, I don’t have that kind of support.
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.
When you’re diagnosed with MS, one of the first things they tell you in some of the meetings is that you’ll find out who your friends are real fast, because it’s such a long term, and then they start reading about it. And you’ll find out who your true family is real fast. Oh yeah, right. Judy has a very strong family.
In some cases, the families' interference became a very negative experience and it even caused additional stress and worries.
Do I just not find a job and go through the assets or do I find a job and leave him at home by himself, or do I find somebody to help me? There was no help available. So, in order for me to get somebody to help, it would have to be a relative who was willing to do it for essentially nothing, or for a very low fee…or you just take a chance and leave them at home.
I met someone who became very special to me. I was dating someone and that, in my lifetime, it has not occurred very often—that I became very interested and attached or went out with someone—and I was very happy. And he lived close by and he actually cared for his mother and we got along very well and… Well again, like she said, “You’re abandoning your mother.” And everything I did that didn’t concern our mother, or caring for her, or the house was considered selfish or abandoning. And anything I did was never good enough. Like, she would say, “Is mom eating well?” And I said, “Well, I buy the groceries. I make the food. I can’t force feed her. She’s eating like she’s eating.” And she said, “Well, I think mom is losing weight.” And I said, “Well, if you don’t like what I’m making or she doesn’t, why don’t you do it?”
And she said, “I will. I’m going to come once a week and make a nice dinner for mom.” And that was in 2007. In 2011, I was still waiting for her to come and make dinner, not only once a week, but once.
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.
So that has been very, beyond helpful, that support group who—they are just my friends at this point really—and then, as well, the therapist. And then, just surrounding myself with people who are up to having honest and real conversations. So I think, at that dark time in my life, I wasn’t with people who could handle what I was going through.
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.
For caregivers, I think, one of the best things that happened for me was when my brother came up for two weeks, and my husband and I went on a holiday, and my brother and his wife came up and stayed with my mother for two weeks. And it was wonderful, because I was comfortable leaving her.
It's the same thing. He was getting up at night and falling. Now, try to lift this. He is all flabby. And he didn't want anybody. Because now, “My God, I have no choice, I have to get someone. I cannot leave you on the floor.” Which means that you have to bother a neighbor, and then you... If we had a budget for this, then you feel less embarrassed.
Several caregivers explained how they had to learn to be more comfortable with asking for or accepting help.
And similarly, for us to have a social life it really means inviting people here because it’s easier for us to do that than to try to find care in the evening and all that sort of stuff. But part of the learning is to—so we often will do the meals and so forth, and our friends might say, “Well, why don’t we, why don’t we just bring the meal?” “No, no, no.
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 like to read more on this topic.