A caregiver is someone who provides physical and emotional care to a cancer patient or survivor. The caregiver may be a partner, an adult child, a family member, a friend or group of friends. A caregiver provides care at home, where most patients and survivors receive care and support. A caregiver provides indispensable support to a patient or survivor, including driving them to appointments; helping to manage side effects; keeping family and friends up-to-date about the patient or survivor’s condition; coordinating care; giving and keeping track of medicines and test results; physical care, including feeding, dressing, bathing; taking care of legal and financial issues. These many roles make the caregiver an essential part of the cancer care team.
As a general rule, for every cancer survivor there is at least one caregiver, and since there are approximately one million cancer survivors in Canada, we can assume that there is another million or so caregivers.
Caregiving for someone with cancer can be a daunting task and it can leave you with little time to take care of your own needs. It might be difficult to keep a job and you might have to work fewer hours, leave your job, or retire altogether. It is estimated that caregivers provide seven hours of caregiving for every two hours of professional homecare, and that 50% of them are between the ages of 45 to 65 years old, at the peak of their earning potential. This creates an enormous strain for the individual caregiver and the family.
It is important to understand your feelings about this journey as well as those of the survivor. The first step is to know that it is normal to feel overwhelmed and distressed and that some of these feelings might come and go:
- Sadness is normal, but if it lasts more than two weeks it might be an indication of depression, in which case you might need to seek professional help.
- Anger is also normal, and some of it may be directed to the cancer patient. It is important to know that you might feel angry because you are afraid or stressed, but that this feeling will be temporary.
- Grief is related to the potential loss of a loved one from cancer. You may also be grieving because you have lost the life you had before the cancer diagnosis. Allow yourself to grieve these losses.
- You may also feel guilty because you feel that you are not doing enough to help, or that you are healthy while your loved one is suffering.
- Loneliness might creep in when you feel that you are alone in this, and that nobody understands what you are going through.
However, there are many healthy coping mechanisms that you can put in place to deal with these feelings:
- Surround yourself with supportive family and friends.
- Join a support group for survivors.
- Seek to develop a hobby, preferably out in the community.
- Take part in social activities.
- Keep a healthy body weight.
- Eat healthy, balanced meals throughout the day.
- Take time and do something just for you.
- Have a place where you can relax and be yourself.
- Set priorities and manage your time accordingly.
- Never forget to seek help when you think you need it.
Good communication is essential. Holding regular meetings with family and friends will help you communicate what is going on as well as providing you with an opportunity to ask for whatever help and support you feel is necessary. Learning how to say no and knowing your limits is also very important. Sometimes you might be dealing with problems of your own, or you don’t know how to take care of a sick person, or being around sick people makes you uneasy. Knowing your own limitations is a large step in knowing how much you can give.
Joining a caregiver or support group might also allow you to express your own feelings about the experience as well as help you develop coping mechanisms. It will reassure you that others are going through the same struggles as you are. The Canadian Cancer Society has a peer support portal that connects people with another person who has been through a similar experience. You can sign up on line, and the service is free. They also have an extensive list of support groups in various areas of Canada.
If your relationship with your partner was strained before cancer was diagnosed, you may find it deteriorating further. Being a caregiver will change the roles you and your partner have in your relationship, and this might cause conflict. Try to be open to seeking professional help or counselling.
In some cases, the whole responsibility of becoming a caregiver might be too much for you. You might feel that the burden was imposed on you and that now it is too much to bear. That is why is so important that you make your feelings known as soon as possible so that additional resources can be identified to ensure care for the patient or survivor. You need to think about what is best for you, because that will have an impact on the life of both you and your partner.