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A caregiver is someone who provides physical and emotional care to someone with cancer – but they aren’t paid to do this work. Today, people with cancer often receive most of their care as outpatients, which means they do not stay in the cancer centre or hospital. They are able and want to spend more time at home. Caregivers who provide this care at home are usually the partner or spouse, parent, adult child or close friend of the person with cancer.
Caring for someone with cancer isn’t easy. It often involves taking on many new, important responsibilities. It can go on for a long time – many months or years. It’s not something you expect or plan ahead for.
The responsibility can be overwhelming and stressful, but it can also be very rewarding. Most caregivers agree that the experience changes their lives. Some of the rewards that caregivers have reported include:
- feeling a closer bond with the person with cancer
- finding added meaning in life
- finding new strength
- developing a new appreciation for family and friendships
Deciding to be a caregiver
Caregiving is a big job, so you need to know what you’re getting into before you make the commitment to do it.
Find out if you will be the only caregiver. It’s important to know if you are caring for a loved one on your own or as part of a group of people who make a caregiving team. The person with cancer might prefer that you are the main caregiver, but there may be other people who can also help.
Ask about home care services. Home care services such as having a nurse or personal support worker come to your home to help with medicines and bathing may be available where you live. Knowing about services that can help you if you need it can make you more confident of your decision. Home care staff can teach you caregiving tasks like how to turn someone in bed.
Learn what tasks will be needed as part of the caregiving. Make a list of what caregiving tasks need to be done. Be aware that the need for caregiving and the tasks that have to be done may change over time. You may have fewer responsibilities as your loved one gets stronger and healthier after treatment has finished. You may have more responsibilities over time if you are caring for someone with advanced cancer.
Decide your limits. It’s normal to be uncomfortable with the idea of giving medicines or giving physical care (such as bathing the person with cancer or helping them when they go to the bathroom). Maybe you’re worried about juggling the responsibilities you already have at home or work with this new role. Be honest with yourself about what you can realistically do and what you are most comfortable doing.
Talk about your role. It’s important that you, the person with cancer and the healthcare team know what you will be doing as a caregiver. You also need to let people know what you aren’t comfortable doing as a caregiver and where other help will be needed.
Is caregiving right for you?
As much as you may want to help, you may realize that you aren’t able to take on too much in caregiving. It may be that you have your own health problems, you live a long distance away or you have other responsibilities like being the main source of income for your family. And that’s OK. You may still be able to help out in some way.
In some cases, it may be best for both you and the person who has cancer if you are not the caregiver. Sometimes changes in roles negatively affect relationships. For example, it may be hard for a couple to still feel like partners in life if the relationship becomes one of patient and caregiver. Family members, especially spouses, can find cancer just as hard to cope with as the person with cancer, and they often need support of their own. In that case, they are not in a good position to be a caregiver.
If you’re feeling pressured to become a caregiver, it’s best to be honest about how you feel. If you talk about it, you can usually work something out.
You may find that being the only caregiver is too much for you, especially if you have other responsibilities like working or taking care of your own family. Caregiving shared with other family members or close friends can help make it easier. Each person can focus on the responsibilities that they are most comfortable doing or that they have time to do. You may have a flexible schedule so you can drive to treatment and other appointments. Another family member may be trained to help with physical care and can take over bathing and other personal care. Others may find they can help by cleaning the house, doing laundry, going grocery shopping or cooking meals.
Even if you don’t live very close to the person who needs care, you can still help out. Think about what you can do from a distance. A common long-distance caregiving task is to make sure that bills get paid or to sort out other financial matters. You can make regular phone calls to your loved one to talk and share. When you visit, you can give the full-time caregivers a rest by taking over some of their caregiving tasks.
If you are a long-distance caregiver, stay involved with decisions about care and treatment by using conference calls or emails with the healthcare team and the other caregivers. Social media can also help you keep in touch with the other caregivers and your loved one.
It’s hard when you can’t be there to help every day. You may feel very guilty about it or feel a lot of pressure to move closer so that you are there more often. Long-distance caregiving is more common than it used to be because families are more spread out than they used to be. With a little creative thinking and effort, you can find ways to contribute and be involved in caregiving even from far away.
I was in total shock when I heard the diagnosis of cancer. Cancer to me was an adult’s disease. Being a 13-year-old teenager, it certainly wasn’t even on my radar.
Great progress has been made
Some cancers, such as thyroid and testicular, have survival rates of over 90%. Other cancers, such as pancreatic, brain and esophageal, continue to have very low survival rates.