Most of the caregivers we interviewed experienced a point in time where they realized that they couldn’t do everything alone and needed support. Caregivers found different resources depending on their situation, their needs and what services were available in their area. Several caregivers mentioned that a centralized source of information would be useful, although no such resource is available in most places. Sometimes, caregivers simply didn’t know what resources and support existed. In most areas of Canada, more could be done to share information about current services and support in a way that caregivers and their families find useful.
Because I’m sure that there are people who are at a loss with the situation, because it’s all new, who haven’t journeyed as much as my situation of 30 years has made me journey. And knowing that at the CLSC, they can help you with respite, family support, specialized equipment. To know that the rehabilitation centre can help as well.
Caregiver support groups and disease specific organizations
About half of the people we interviewed had joined a caregivers’ support group. Generally this was valued as a good starting point where they could receive information on caregiving and to get support.
Mrs. Smith: I didn’t know where to turn and I felt like it was only me. I kind of thought I needed help, and sometimes men and women are not on the same plane. The men usually kind of take it lighter than women do. Women take it more seriously or more emotionally.
Mr. Smith: And when it’s your own mom, that also makes a difference.
Mrs. Smith: More emotionally, so therefore I was finding it really hard. Then I was kind of saying, “I’m going to the Caregivers’ Society.” So we meet once a month, last Monday of the month, and that was one good resource for us.
Mr. Smith: It was extremely helpful.
Mrs. Smith: And extremely helpful both emotionally and resource wise, because everybody was sharing their experiences. And from there we knew how to reach out because you are telling your story in a group and other people will say, “Why don’t you do this? Why don’t you do that?”
Mr. Smith: “I tried this, I know this person,” and so on. You are pooling information that was really helpful.
Mrs. Smith: We still belong to that group and once a month we still go.
Mr. Smith: Yeah, now we’ve become a source of information after all our experiences. If you only hear stories over there, it’s beyond belief what you hear. People are just sitting there just crying their heart out because they are just desperate, right? So it’s unbelievable.
Mrs. Smith: But then you feel like, okay, you’re not that worse off [compared to] the next person, because some of the stories you hear from other people, to what extent they have to caregive, and what it takes out of them…
Mr. Smith: Yeah, it’s incredible. And then the situation is resolved and you see that the people are totally changed, like you barely recognize them. And you can really see the stress on people’s faces, and I think this is really a big issue I think. With us becoming old fogies, I think, it’s going to be a much larger issue. I’m sure it’s not being sufficiently realized how big an issue this is going to be. I think with the younger people having two jobs and stuff like that, I don’t think they will be capable of looking after us.
I know most caregivers feel a lot more negative emotions than people would think. Often outsiders will look at a situation and they’ll feel very sorry for the person who is ill or disabled, and understandably, but they often don’t see the impact on the caregiver as well. And when we took that course at the MS Society, one of the questions the […] facilitator asked was “What was the one emotion that comes to mind when you think of yourself as a caregiver?” And she was anticipating positive emotions like caring, loving, and I don’t know what—those sorts of things. And to a person, everybody in the room, and there was about maybe 15 of us there, the emotions were all negative: frustration, anger, depression, whatever. They were all negative. And it surprised me that that surprised her, because she was a psychologist or a psychiatrist, I can’t remember which. So it surprised me that she was expecting more things about “Oh, I’m so grateful that I can do this for my husband” or whatever. I don’t know what she was expecting, but she wasn’t getting it.
And that’s one of the reasons that the caregiver support group is so valuable. And if anybody who is a caregiver and isn’t in a support group like that, I strongly suggest that they find one or start one. Because if nothing else, it’s just other people who understand what you’re going through and you can blurt out all the negative feelings that you’re having at that time, frustrations or whatever, and feel that it’s going to be understood. People aren’t going to just kind of say, “Well just imagine what your husband’s going through, “or that kind of thing, or “Just be lucky the shoe’s not on the other foot!” or whatever some of these responses might be.
Then I found out about a support group that meets once a month in [a town in BC], and that is sponsored by the Caregivers Network Society here. So I started attending that. That’s during the day, once a month. And I didn’t find it very satisfying because nobody else in the group of about 10 people, were in the same situation that I am and have been providing total physical care 24/7.
Just a sensitivity to the caregivers, to acknowledge them, and maybe provide also some services. Like for example, some support groups. I can’t believe that nobody has thought of this. Support groups for caregivers in a hospital setting. You put a social work student, or I shouldn’t say a student because it still requires skills, somebody trained in group work.
And maybe the whole issue of support groups, I keep going to that, it just seems to me so obvious and yet so lacking.
Have you been looking for support groups? Have you been connected with a support group?
To my knowledge they are not in existence, but I think if there were, I would probably participate.
And would you like to have it from a hospital structure? Or could it also be a caregivers’ organization that provides support groups?
I don’t really care where they would originate. I don’t really trust hospitals with that kind of situation because they just don’t understand. I feel they don’t understand. So why would they create something when they don’t intuit the need for such a thing. So it might eventually have to be based independently, or be based in CLSCs, I don’t know.
Some people stopped attending support groups. Sheni, for example, found great support from an online spousal support group. She attended face-to-face meetings and still has contact with certain members of the group. Although she visited the site less often once she got over her initial excitement, she definitely thinks people should check out this resource and sign-up; it was still very helpful at first.
I went to this group and they had a speaker there. She was a nurse. Somehow she dealt with illnesses or whatever, and she was a very, very good speaker. She talked about a bouquet of balloons, and how there was strings, and each one would let go. And she says, “Don’t wait until you only have one or two balloons left to get help”. She said, “get help when you have a lot of strings to hold onto, because you may be too late for your help if you wait till you only have a couple strings left.” I remember her saying that, and that was when we went for professional help after that.
But the women in the group each shared their story that night, and I had no idea how painful it was for them to share the story, because they had to go back to the beginning. And they had been in it for 30 years already or quite far into it. And until later on—I stayed with the group for a long time and we got some new members down the road—I remember having to share my beginnings, my story, and that was when I realized how painful it was for what they did for me when I joined that group, and how they went back. Because it was so hard to me to go back.
And it was such a gift that they shared: the symptoms, the advocacy, what worked, what didn’t, what they needed to do to survive. They were a gift. They were such a gift. Providing me with so much information, almost overload. And it wasn’t everything I needed at the time, but I remembered things for later and implemented things that they told me down the road, which really, really helped. I can’t say enough about how great they were
It started with the documentary and then we knew that that’s one of the things that needed to come out of this. And it was perfect timing because one of our young men who was caregiving for his mother, she was in the final stages of brain cancer or something to do with cancer in her brain.
The thing I found most helpful has been support groups, and classes, and courses in all kinds of things; in grieving, in anger, in dealing with somebody with dementia, and what to expect when you’re going to put somebody into a care facility, what you’re going to go through, what grieving you’re going to go through, but where your best decisions are, and the warnings about what kind of emotions
So with the caregiver's association, I don’t know if other cities have this, [the city’s] caregivers association. I don’t know if there is a caregivers’ association [of another city]. I don’t know if that exists in other cities, but they gave me a helping hand. Like when I have an outing with them, they pay for the sitter.
Grocery and pharmacy delivery services
Simple services can make a big difference. For example, Claire said, “So, I think it’s about being creative and finding those little spaces where you can find those moments.” Claire and Luke came up with the idea of having their groceries delivered or them ordering online, which saves them a lot of time. Joseph used to pick up medications for his wife during work hours and then bring them home in case of an emergency: “We learned that the pharmacy had a delivery service, but I had never thought about asking for this service because I was doing it. I took upon myself to attend to all her needs.”
Several caregivers made use of door-to-door transportation services. Sometimes they were run by volunteers and sometimes they were professionally organized.
You’ve got to be a total advocate, I’ll tell you, to be a caregiver. Mind you, I mean, I’m sort of naturally an advocate. I can’t help myself, but you do need to be. But not everyone is, because I watch some of the especially elderly caregivers and they haven’t a clue what’s going on. Like the other day, I intervened—oh, they love me down there—I intervened [for] this guy next to my husband who was going home.
So they want him to go in [name of company] which is a private ambulance, but they don’t tell him that it’s going to cost him $80 cause he lives up here. And so I say to him while the nurse is telling him this, I say to him while she’s there, “this is going to cost $80,” because she’s not telling him. “Well, this costs $80.”
And so, then there’s an organization called [name organization]—and I don’t know if it’s… I think it’s just on the Island—and they have vans and they drive you for free. They drive people who live in the rural areas into the hospital and back home and to doctors’ and specialists’ appointments, to dialysis, etc., for free. Actually my husband had a card on him because he’s used it when I’ve been working, and we gave this guy the card or gave it to the nurse and I said, “Organize this because he doesn’t have to pay for this.” She wasn’t that amused. But actually, once she phoned [voluntary organization] and found out about it, then she was quite happy because it was another resource she had that she didn’t know about.
Alyce has insurance coverage to get a chauffeur to take her husband places; this is a great help when it is cold and icy outside, and the driver gives them a hand.
In Snoopey’s case, the door-to-door service once cancelled 24 hours before their appointment even though she had booked three weeks beforehand.
Day programs, respite and holidays
Like Matsonia, there were other caregivers who made use of day programs for their care recipient. Sheni’s husband goes to a day program on Mondays and Tuesdays. Sheni thinks it is good for him to get out and socialize. Joanne’s mother used to go to a day program but stopped because she felt everybody there was old.
Some people arranged to have paid caregivers look after the care recipient so they could have some time for themselves. Donovan and his wife, for example, had made arrangements for people to come and help out before they decided to have live-in-caregivers. Michael and Lillian’s son has always been in specialized schools and after school they had privately paid caregivers. Now that he has turned 18, they will have to look into different options for daytime care.
It was very difficult for her to do any buttons or zippers or put her socks on, things like that. It became more and more difficult as time went on. And we found that 45 minutes just wasn’t enough. I would leave and the person wasn’t there yet and I would be worried about leaving.
Home adaptation and other resources
Several caregivers had made home modifications they found useful, such as a ceiling pole, railings, and a walk-in bathtub. Several caregivers had received funding for these modifications through local or government programs and had a specialist come to their home to advise them on the appropriate changes. Others had made changes in the home themselves, such as removing doors to make the home more accessible. Some caregivers decided to move to a new home that was already adapted for their needs.
Several caregivers needed specialized equipment like scooters, or elevators. Rachel’s mother, for example, moved to a disability suite that is partly funded by government and partly by a Christian charity. David said, “My wife has received a wheelchair free of charge, scooters free of charge, car adaptations free of charge. So there are a lot of social programs that are in place that people need to be aware of. And, I mean, nothing is perfect, but those have been good things for her and for us.”
Again, we were very fortunate. Where we lived had a phenomenal government program, called [an engineering company], where if you could not buy a support, and if they agreed, they would invent it for you. So one of the things that they invented—there was a woman there [and] we took advantage of it as grandparents—but one of the things they did is they made handicap accessible cribs and strollers. You cannot buy that.
So, we asked them to build us one because my daughter and her oldest son came to live with us for a while, and I didn’t want to have to get a babysitter if I was going out with my daughter if I didn’t have to. […] I mean to get a babysitter when there’s an adult in the house has its effect on everybody. So they created this crib for us. We bought the crib, they put it on stilts, the wheelchair went underneath and it opened with Plexiglas sideways. So, from the wheelchair you could pick up the baby, and there was no reason that my husband couldn’t care for this baby once he got him out of the crib. So that was one of the phenomenal things, the phenomenal experiences. I wish every province and every state had a government organization that did this.
As my husband deteriorated, we had had our first—his first car was a Grand Caravan and it was accessible but he drove; he could transfer. As he could no longer transfer, the car became obsolete. We couldn’t afford—these are very expensive vehicles—we couldn’t afford to get another one and nobody could figure out how to do it. [The engineering company] in the end cut his wheelchair in half with 40 ball bearings. Put ball bearings on the drivers seat, it was just the base, so that he could pull up next to it and just move over and drive from it. It made such a difference in our life that he could still drive and I didn’t have to do all the driving. It made such a difference to him, and it made such a difference to the government in that he was employed.
What would we have done? Gone on disability? It is so short-sighted not to have these programs. You wind up needing mental health professionals, needing or going on disability or welfare. There is no reason if the only problem is getting where you’re going in order to work, on time. So, all these things are my pet peeves, all the things that I’m mentioning. It’s so important to see the bigger picture, the ripples. Again illness doesn’t just affect the person, it doesn’t just affect the family; it affects everybody.
You can read more about resources that support caregivers and/or caregiving in specific topic pages. You can also visit our Resource section to find links to other organizations and useful tools and services such as Tyze (a caregiving planning tool) and Caring voice (a telephone service) to help you with caregiving. In the topic page Society and caregiving you can read more about how people felt about the support services that exist for caregivers.
Several caregivers spoke about the impact of caregiving on their mental health. Many caregivers have made use of counselling services or have received help from social workers. You can read more about this in the topic page Impact on health.