We asked the people we interviewed if they had advice for other caregivers. Caregivers reflected on what they had learned and what they felt was important for other caregivers to know. A major piece of advice was not to make the same mistakes they did. Often the caregivers’ biggest concern was the health and wellbeing of other caregivers; they urged other caregivers to take good care of themselves.
Care for yourself
One main thing is—I’ve been hearing it for years—you’ve got to start as early as you can in looking after yourself, because if you don’t look after yourself then you’re not going to be very good at looking after somebody else. That’s a cliché. It really is a cliché. And other people that I know in this one support group, they are able to look after themselves.
To other caregivers, don’t burn out like I did; take care of yourself. It’s okay to take care of yourself. The analogy is of the train, the locomotive in the front that’s pulling the whole rest of the train. You have to give yourself some fuel. Otherwise that stops. So, if it can help to think of it in that way, that you’re doing it for the other person to make you feel you can justify it.
Caregivers often start by helping the care recipient with everything. Only later on, do they notice that the workload is too much for them.
And I think people sometimes just leap into it. And I think probably I’m a good example of that. I just, I was like Boing; once I got the trigger, once the trigger happened, once my father would say, “I miss you,” which was my trigger.
Listen, I think that searching for help, not to try to respond to all the needs on your own, and to… to go get some, whether with the CLSC, whether with the caregivers. There is a lot, a lot of progress in Quebec that took place in the last two years regarding caregivers. I say two years, but in [region in QC], it has been around for a long time. I didn’t know that. And there are lots of people who are family caregivers and who don’t even know they are family caregivers. So, for sure they are not going to use this service. And then, but me, with the support I received, it’s support from external organizations that offered support whether it’s for men, whether it’s for an emotional issue, relational, for caregivers in any case. And it’s these needs for me, these services that were much more helpful than psychological therapy. I consulted a psychologist as well, but participating in these organizations or in support groups, more specific or targeted… In any case, go for it! Go on the internet, it’s easy for those who are able to go. And caregivers or family caregivers, there are lots of tricks for caregivers, and yes, for elderlies, but yes, for any clientele as well. There are some for different health issues and there are general ones and all that. So, that’s it. I think one should absolutely not try to respond to everything oneself. That’s the mistake I made at the beginning, to try to respond to as much as possible—as soon as there was a need, I would absorb it and try to respond to it somehow. Then I would do it in a lame way, and I was losing myself in all that.
Caregiving can be very stressful and exhausting. Several caregivers advised that you need to look after your own health and make sure you receive the medical help that you need. Speaking with a doctor can be a first step. Be sure to also “shop around” and find out what services and activities work best for you.
Marlyn, for example, has been recovering from a back injury over the last few years. She urged caregivers to stop performing physical tasks before they injure themselves. Richard said that you can only become a better caregiver if you are more relaxed with yourself, and realize that you need time for both your partner and yourself. Several caregivers said it was important to consider respite.
You can read more about how caregivers organized their respite or holidays on the page Travelling, holidays, and respite.
In the topic page Caring for yourself, you will be able to read more about what the caregivers did look after themselves.
Many of the people we interviewed encouraged other caregivers to seek help when they need it. Christine said, “I have to acknowledge that it can’t be done alone and there is help there, maybe not enough, but there’s something there that will give you more strength to carry on that role of caregiver.”
Ask questions. Ask. The worst is you’ll be told no. But if you don’t ask, you don’t get. That took me a long time to figure out, but the squeaky wheel gets the oil. It does. And you don’t have to squeak annoyingly; you can squeak nicely and it still works. Ask the nurses questions, ask… go to your library if you can.
Matsonia's advice is to talk with experienced caregivers so that you know what to expect. Daphne suggests that you learn from friends and ask all the questions that you have.
Several caregivers used the internet to find information. Hélène started using Facebook and reconnected with many old friends who were also caregivers.
Based on my experience, what would I say to the caregivers? “Listen, go to the associations, you will hear about others, and they will give you tricks. Don’t wait for the CLSC, you have to call them.
Many caregivers found help and support from caregivers’ organizations. If you would like to know more about support groups, you can visit our Information & links section. To read more about caregivers’ experiences with support groups, please see the topic page Resources.
Others advised that caregivers need to learn to accept the help that your family and friends offer.
Well, I think that’s a really good point about “don’t place expectations on them.” But also the converse of that or the other side of that coin is “don’t expect that they don’t want to or don’t love” either. So, don’t just expect that because your child is disabled that nobody wants—your family members don’t want to be.
Yeah don’t be stubborn like I was; don’t turn down help. Never dismiss the idea that you’ll never get burned out, because it does happen. If you are a 24/7 caregiver and if you put into it as much as I do you will get burned out and you won’t know it. Don’t listen to your spouse if they’re refusing homecare; just do it.
Get help with legal and financial issues
Several caregivers had dealt with legal issues and their overwhelming advice was ‘get help from a professional early on and be prepared’. You can read more about their experience and advice in the topic pages Legal issues and Financial impact.
Take it one step at a time and learn along the way
Many caregivers had to learn to live from day-to-day. These caregivers used expression like “today is all you’ve got”, or “take it one day at a time”.
Mike explained that when his wife was diagnosed with Multiple Sclerosis, they approached the illness as a team, as husband and wife. Speaking figuratively, he said, “It’s not my wife has MS; we have MS.” This way of thinking made it easier for him to deal with her illness and the consequences it would have on his life in the future. All at once, reading about the long-term effects of the illness was overwhelming for Mike. His advice is to approach the situation step-by-step: “It is a great big elephant and you can’t consume it all; you take a little bit at a time. But at the same time, ask yourself what you want in the long term.”
Several caregivers learned that they had to make a change within themselves. Hélène, for example, said, “You have a choice; you can whine all day, or you could say, ‘I’m going to be in a nicer mood.’ You can learn with time that the only control you have is how you react. And that’s taken forever to get that.”
Well, consider each situation, but one of the things is “just be patient.” Just be patient. Like I said, “who cares”. Is it that important that you get stressed out over it, or you get angry over it or, or depressed over it? No, no it doesn’t matter at all. Just hang in there and grin and bear it. There’s an end and you never know what blessings will come because of the way you acted.
Michael said, “I think you just have to accept who you are and move forward. Because if you stand on the sidelines and just are angry that you are in this and you can’t get past that, you’re really headed for trouble.”
Other practical suggestions were to keep your sense of humour, to keep an open mind, and to stand your ground. Several people cautioned others to ’not beat themselves up’, and urged caregivers to be confident that they are doing an amazing job caring for someone.
I guess that must have been maybe 4 years ago, and I was at the drugstore and I found a pill timer. It was a pill timer where you keep the pills in it and set the time up to 12 hours, I guess it is. And that was just a real feather in my cap because I could set it every 3 hours or 2½ hours and I could remember to give [my husband] his pills on time.
The string that hangs on the door handles—I don’t know if you noticed those—that’s so that [my husband] with—sorry I said the name, you’ll have to black that out—that’s so that my husband coming in a wheelchair, because he can’t reach back and grab the door handle once the wheelchair’s all the way clear of the door, he’s got to be able to grab that string and kind of pull it with him so that he can pull the door shut behind him. So it’s things like that that either I have to come up with or somebody else has previously figured out and you find out through various support groups. And my husband belongs to an MS group that he goes to, so he probably gets tips from them about things. I have got certainly a number of tips from people in the caregiver support group about just how somebody does something… what you can do to… like people with MS in the early stages, one foot tends to drag. So I happened to find out from the shoe store I visited that has a kind of foot health clinic, that you could get a different kind of sole put in the front part of the shoe that’s very slippery so that it doesn’t catch as the foot is dragging; it slides. And that you wouldn’t have necessarily thought of.
So, there are all sorts of solutions that people have found—winter boots. When they have difficulty walking and their feet catch, […] they have difficulty even putting shoes on and off, the idea of winter boot—having to actually take shoes off and put winter boots on and then take them off again when he gets somewhere—that just doesn’t work. Then I found out, I think it was through the same shoe store, about these big things…they’re kind of like big galoshes but when you open them all up, they almost look like a big paper bag you’re sticking your foot into. So it’s not like those kind that really fit tightly over the shoe, because again, somebody with MS just doesn’t have the ability to deal with something that is sort of sticky and tight fitting. But sticking your foot in essentially a big bag is doable, and you keep your shoes on. So that piece of information I got, […] the shoe store happened to find out because a lot of the mailmen apparently use them because they’ve got very good grips on the bottom.