What caregivers do

What you do as a caregiver often changes over time, depending on what the person you are caring for needs. Your caregiving role may get smaller as they recover from treatment and get back to health. Or you may slowly take on new caregiving responsibilities if your loved one has advanced cancer and starts to need more help.

One of the key caregiving roles you may have is being the main contact for the healthcare team. The person you are giving care to may ask that you talk to the healthcare team and help make important decisions about treatment and care.

You may be responsible for keeping track of any appointments for tests and treatment sessions and making sure the person gets to them. During visits, you may be asked to make notes and keep track of any changes or decisions that were made. You may want to keep a file of test results, a list of medicines and other important information from the healthcare team.

It’s important that you share information with the healthcare team about any pain or side effects your loved one is having. Let them know how both of you are coping, and let them know about any concerns you have.

Helping with physical care is a common part of being a caregiver. The amount of physical care you have to help with will depend on how well the person with cancer is and how much they can do alone. You may be asked to help someone:

• walk or move around with a walker or wheelchair
• get in and out of the tub or shower or giving sponge baths in bed
• get into or out of a bed or chair, moving cushions or helping them turn or roll over in bed
• use the toilet or bedpans
• change incontinence pads or catheters
• brush their teeth, keep lips moist or rinse their mouth
• wash their hair, moisturize skin and trim their nails
• with eating, including making meals

You may also be responsible for giving and storing medicines. This includes giving the correct amount (dose) of medicine and keeping track of when they were given.

With physical care, there’s a lot that is probably new to you. That’s OK. You can learn how to safely care for someone with cancer. If you have to turn or lift the person you are caring for, you need proper training. You don’t want to hurt yourself or anyone else. A home care nurse, physiotherapist or occupational therapist can teach you how to do this and can suggest how best to care for your loved one.

Ask the healthcare team about getting assistive devices in your home to help with care. Assistive devices are tools that help people be more independent and make your job easier and safer – for example, a walker, lift, wheelchair, shower chair, grab bar, portable commode or urinal.

You may not be comfortable about helping with some personal care, like bathing or changing catheters. Or your loved one may not want you to do some things. Many people feel this way. Talk to the healthcare team about home care services that can come and support you and your loved one with the tasks you’d both be more comfortable having someone else do.

Caregivers are usually the main source of comfort and emotional support for their loved one. You may have to help them deal with their emotions and talk through difficult decisions that have to be made about care and treatment.

You can have a very positive effect on how your loved one copes with cancer if you:

Help them live as normally as possible. Allow them to continue with their usual day-to-day life as much as they can. Let them know that you’re there to help – but let them decide when they need it. Encourage them to decide which activities they can do and think about what they enjoy the most. Help them make those activities their priority.

Encourage them to share their feelings with you. And it’s just as important to share your feelings with them.

Listen when they want to talk. Let them know it’s OK to express fears and concerns about what is going to happen. And it’s not always easy, but listening without judging is often more helpful than giving advice or offering solutions. If they don’t feel like talking, let them know that you’ll be there when they want to.

Keep them company. Just being there can be comforting. Talk, watch movies together or listen to music. Use this time to take a break from the worries and concerns that you have about cancer.

Use touch when you can’t find the words. Touch is a powerful way to communicate and can show how much you care. A squeeze of the hand or a gentle hug can say a lot.

Respect the need for privacy and to be alone. Coping with cancer sometimes means that you and your loved one have to take some time alone to think or reflect or just take a break from each other.

Part of caregiving means that you may have to handle tasks that are part of day-to-day life, such as cleaning, doing laundry, shopping for food, making sure bills get paid, looking after children or sorting out childcare. While these aren’t directly a part of caregiving, they are still things that have to be done to keep a household going.

You may also have to be in charge of coordinating care of the person with cancer. This involves a lot of organizing and scheduling. You may have to arrange home care and nursing visits or transportation to appointments. If you have other family members sharing responsibilities such as driving to the treatment centre, you may have to make a schedule and let everyone know what they have to do to help.

Another practical task is making sure that important papers are organized and kept in a safe place. This can include insurance documents, wills, advance directives and other legal or financial papers.

Caregivers often become the main contact for letting family and friends know how your loved one is doing. If this takes too much of your time or you find it hard to do, you can ask someone you trust to help out. Keep this person updated and then they can update others. Social media or email allow you to share messages and photos and update many people at once. You may also want to start a call list of people that you want to call or who need to be called with important news.

When you are caregiving, you may find it hard to focus on your work or you may even miss all or part of your work day sometimes. And you may be tired from trying to do as much as possible at work and home.

Talk to your boss or human resources manager about your caregiving responsibilities and what your options are. There may be solutions such as changing what you do at work, job-sharing, working part time or taking some time away from work. Some workplaces also offer counselling services that may help you or your family.

Many caregivers worry about their household finances. Keeping up with your usual bills is hard enough if you have to work less because you are a caregiver or if your partner with cancer can’t work for a period of time. Having to pay insurance deductibles or pay for home care, transportation services or meals and somewhere to stay close to a cancer centre can be very stressful at a time when family income is less than what it was.

As a caregiver you may be eligible for various forms of assistance from the Government of Canada.