Caring for someone with cancer is a trying experience. It means putting your life on hold, juggling a busy day-to-day schedule, trying to be present, while preserving your most vulnerable loved ones (children, for example), in order to support someone throughout their illness and sometimes until their death.
After the shock of the diagnosis, comes the mobilization
“The fear of the diagnosis and its possible fatality comes as a strong emotional charge,” explains Isabelle, a caregiver counsellor. Family members are often called upon to mobilize, as much as their personal capacities allow. This involvement is particularly important for you, the caregiver. Even if it is only to accompany the sick person to medical appointments: this means taking time off work (with a possible financial impact), and sometimes driving hours to get to the hospital.
The whirlwind of the day-to-day schedule
The sick person you are caring for may be suffering and not be able to perform tasks as they used to. Daily life then depends heavily on you: managing daily affairs, medical appointments, sometimes medication and care, work (and absences from work), children, an aging parent, home maintenance…
You are witness to a new organization that will evolve with time and treatment in order to preserve the quality of life of the sick person you are caring for as well as that of the family.
At the same time, certain physical changes, following treatment or an operation (for example, hair loss during chemotherapy, mastectomy for some women) may also require one or more adaptations for the sufferer as well as those around them.
An emotional presence
You also provide essential presence and emotional comfort. The person you are supporting needs to be listened to and empathized with. They may or may not want to talk about their illness or about dying, or they may want to put their affairs in order. It is sometimes difficult to listen to the other person through your own fears and emotions.
And what is your role in all this?
As a caregiver, you give as much as you can at the risk of forgetting yourself and neglecting your own needs. Our Caregiver Support counsellors are trained to listen to caregivers like you, and they know the challenges of supporting a loved one with cancer. Here are a few tips for you:
- Understanding the illness
“Some people need to understand the disease and anticipate the next steps at their own pace,” explains Delphine, a caregiver counsellor. It is important to consult reliable sources of information at your own pace.
Delphine also suggests preparing for medical appointments: have a list of questions and don’t hesitate to ask the medical staff any questions. A better understanding can alleviate certain anxieties.
- Inquiring about the financial component
Illness can have a significant financial impact. This is a question frequently addressed to the Caregiver Support Hotline. Tax credits, financial assistance, leave for caregivers… How do you navigate your way through it all? Our Caregiver Support counsellors can help you understand the financial and fiscal aspects.
The better you feel, the better you will be able to support the person you are caring for. When faced with the urgency of the situation, it is easy to forget your own needs. You may want to try to create some space for yourself, and above all, show some indulgence to yourself. There are ways to protect yourself while continuing to support the person you are caring for. For example, respite care is a way to give you some time for yourself. Another option is to seek professional help if you feel the need to talk about what you are experiencing.
You are certainly experiencing an emotional roller coaster. Expressing your feelings is a healthy thing to do. Just because you are healthy does not mean that the illness of the person you are caring for does not have an impact on you.
And, as difficult as it may seem, it’s important to try to identify your boundaries and share them with the person who is ill as well as with those around you.
Asking for (and accepting) help is not easy! Even if you are used to managing on your own, there may come a time when everything becomes more difficult. You may be surprised to find that those around you (family, neighbours, friends) are happy to help you, give you advice, share information, make a referral, provide a service. Outside resources (CLSC, volunteer centre, community organizations) can also provide you with quality services and support such as counselling, respite care, or even accompanying you to medical appointments…
This is a way to free up quality time to share with the person you are caring for. It may seem contradictory, but “taking care of yourself” is probably the most important way to support someone you are caring for!
It’s not often talked about, but when a patient finishes treatment and the medical results are good, that’s not the end of the story. “Naturally, it’s a great relief, life goes on, but the effects of cancer (whether physical, emotional or cognitive) can persist for months or even years,” explains Valérie, clinical coordinator. For example, there may be a fear of recurrence or the relationship with the person you are caring for may change.
If someone you are caring for dies, there is a period of mourning that begins. Once again, you may wish to be accompanied through this period. The Caregiver Support Hotline is there to refer you to organizations that can help you.
This article was written with the support of Delphine, Isabelle and Valérie from the Caregiver Support team.