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
Caregivers often start by helping the care recipient with everything. Only later on, do they notice that the workload is too much for them.
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 to 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.”
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.
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.
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.”
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.