A caregiver may be a family member, relative, friend or neighbour who provides any form of assistance to a person going through cancer. It is usually not a straightforward progression in becoming a caregiver. You may even feel forced and pressured into taking up the role, have conflicting demands (family or career) or do not really feel close to the person you will be caring for.
Caring can be challenging and when you assume the responsibility, you may need time to adjust to your new role and lifestyle. It is quite natural to have strong emotions; feeling confused and stress is common. You may think the only way to cope is to put aside your own feelings and needs but it will be hard to maintain, and your health may be affected. As a caregiver you have an important role, and you must be healthy and well to perform at your best. A caregiver needs to care for themselves too.
Taking responsibility to care for someone is not an easy task and many caregivers experience strong emotions. It is normal, and acknowledging those feelings and working through them helps you carry out your caregiving commitment better. You may, or may not, go through some of these feelings:
Fear
- Of not knowing much about the cancer, treatment or doctors
- Of being responsible for giving medications
- Of feeling things are out of control
- Of not knowing how unwell the patient is feeling
- Of the possibility the person being cared dying
Anger and frustration
- Towards the extra responsibilities
- At cancer for interrupting plans
- At lack of time for personal activities
- At family and friends for not contributing more help
- At the patient who do not seem to appreciate your sacrifices and hard work
Loneliness
Being a caregiver may result in less time to socialise and do things that you enjoy. Others may think you have too much to do and visit less or they find difficulty in dealing with someone with cancer. You would likely feel that nobody understands the isolation you are experiencing. Here are some ways to help you overcome loneliness:
- Maintain contact with family and friends
- Contact at least someone daily
- Be open to asking for help; in a way you won’t be alone in doing everything
Guilt
- For feeling angry
- For being well while the person you care for is sick
- For not doing better as a caregiver
- For wanting a break from caring
Depression
About one in four carers are found to be experiencing depression, which can significantly affect your life. Some symptoms of depression may include:
- Sadness or emptiness
- Loss of interest in activities
- Loss of appetite or weight
- Sleep problems
- Continuous fatigue
- Trouble concentrating
- Restlessness, worthlessness or guilt
Ways to deal with depression:
- Try to do something you enjoy every day
- Get out of bed as soon as you wake up, don’t lie in bed
- Catch up with people by phone or in person
- Try exercising at least 30 minutes a day
- If necessary, seek professional help from a counsellor or doctor
Stress
Being a caregiver can be a stressful responsibility, which usually shows up in headaches, trouble sleeping, high blood pressure and some heart problems. A stressed caregiver may also feel tired, unwell and overly sensitive. Here are some ways to cope with stress:
- Recognise signs of stress and find ways to manage it
- Try meditating, reading, listening to music
- Exercise regularly, if possible
- Make sure you get enough rest
- Keeping a diary may be helpful to acknowledge your feelings and release worries/frustrations
- Accept that it is alright to make mistakes and try again
- Schedule “quiet time” for yourself. The stress of everyday life can be compounded for family caregivers. You deserve to take some quality time for yourself – schedule a “day-off,” quiet time at home or a day trip to the park.
- Take charge of your life. It’s easy to become overwhelmed by your loved one’s illness and your new responsibility as a caregiver, but be sure to care for yourself and enjoy time spent with other family members.
- Don’t be afraid to ask for or accept help. Call on family, friends and health care professionals to support you whenever you need it. Talk about issues that concern you, and suggest specific tasks or projects that they can do to help you.
- Get organized. Create lists – caregiving tasks, chores and household or family duties – to organize your day. You also can make a list of worries to share with someone to clear your head and get their feedback.
- Learn, learn, learn. Make sure you are educated about your loved one’s illness – knowledge is empowering. Call us (03-2698 7300), visit us or even email us(contact@cancer.org.my) at the NCSM Resource & Wellness Centre.
- Make time to enjoy the pleasures of the season. Go for a walk in the park, visit the beach, attend a concert, go out for a holiday dinner or take a day to go shopping with a friend. The holidays, while stressful at times, are also full of opportunities for diversion and relaxation.
- Talk about your feelings. Don’t be afraid to openly acknowledge your caregiving situation or discuss your feelings with family and friends. With proper support and education, caregiving can actually bring families closer together.
How I’d Like to Help. . .
- Gather medical information about treatment options
- Accompany to doctor appointments
- Take notes during doctor appointments
- Contribute to medical decisions
- Keep loved ones informed
- Promote a healthy diet
- Encourage appropriate exercise
- Look into safe, complementary therapy
- Help with chores (or find helpers)
- Organize and deal with medical bills
- Provide distractions, fun and pleasure
- Run household errands
- Encourage open talk about the challenges we face
- Attend a cancer support group
- Go to a counselor
- Deal with wills, living wills, and other legal paperwork
BOOKS FOR CAREGIVERS
There are many, many books that are useful for cancer caregivers. Here are just a few to get you started.
- A Caregivers Survival Guide: How to Stay Healthy When Your Loved One is Sick, by Kay Marshall Strom (Intervarsity Press, 2000).
- Caregivers Handbook, edited by Deni Brown (Visiting Nurses Association, 1998).
- Caregiving, by Peter S. Houts, PhD and Julia A. Bucher, RN, PhD (American Cancer Society, 2000).
- Handbook for Mortals: Guidance for People Facing Serious Illness, by Joanne Lynn, MD and Joan Harrold, MD (Oxford University Press, 1999).
- Home Care Guide for Cancer: For Family and Friends Giving Care at Home, edited by Peter S. Houts, PhD (American College of Physicians, 1994).
- Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, by Cappy Capossela and Sheila Warnock (Simon & Schuster, 1995).
- Who Cares, A Loving Guide for Caregivers, by Dee Marrella (DC Press, 2000).
