Care for the Caregiver: How to Cope as a Carer for Someone with Cancer

The Mayo Clinic defines a carer or a caregiver as “anyone who provides help to another person in need, such as an ill spouse or partner, a disabled child, or an aging relative”. [1]

Care-for-the-Caregiver

Some people who take care of family members or friends who have cancer do not identify themselves with the carer role, and thus they don’t necessarily know what their role is. Identifying yourself as a caregiver can enable you to get proper information and support to help you cope with the conditions and responsibilities of caring for someone with cancer.

In 2015, statistics show that there are more than 2.8 million unpaid carers all over Australia. About 28.6% (770,000) are primary carers or those who give the most informal help/assistance to others. The majority of all carers and primary carers are females.

In 2012, the majority of the carers were aged between 45-64. The age for carers ranged from 15 years old, to 65 years and over. Most carers were found to be living under the same roof with their sick loved one, and among co-resident carers almost half (45.5%) were taking care of their partners, followed by caring for a child (23.4%), caring for a parent (20%), or a sibling (4.2%). In 2012, a majority of primary carers (38.9%) were reported to spend an average of 40 hours or more per week looking after the person in need. More than a quarter of primary carers say their role lasted between 10-24 years and about 7% say they were a primary caregiver for 25 years or more. [2]

Most common reactions of being a caregiver and how to handle them [3, 4, 5]

With the advancement in early diagnosis and prompt intervention, we find that almost every day, more and more people suddenly find themselves assuming the role of a carer for someone with cancer. Sometimes, this abrupt change of role causes several reactions.

  • Anger and Frustration

This anger and frustration can be an initial reaction to the diagnosis, a reaction to suddenly finding that you need to put your life plans and travels on hold, or it can even be projected towards that loved one who has cancer. You might feel angry and frustrated that you have to be the carer, not having family and friends to help, the burden of extra responsibilities and changes in family roles (e.g. being the breadwinner as well as carer), and being unappreciated by the sick loved one.

– How to handle: Take deep breaths and think, before you speak. Harsh words can hurt an already hurting loved one who finds they have cancer. Find other avenues for releasing the anger – a long walk, exercising, talking to a counsellor, mentor, family member or friend. Try different relaxation techniques and identify, then minimise or avoid, situations that can trigger your anger and frustration.

  • Fear

Fear can be because of the uncertainty of the severity of your loved one’s condition, or feelings of inadequacy of knowing what to do. You may also fear seeing your loved one deteriorate, be nervous about handling medications, or suffer from not being able to control the situation or the future.

– How to handle:

Turn fear into an ally by using it to positively drive you into finding out more about your loved one’s condition, treatment, and medications. Identify what your concerns are as a carer and seek as much information as you can. Think short- and middle- term plans and handle tasks and challenges day-to-day or week-to-week. Consider long-term plans by having the sick loved one make advance directives or have the role of Enduring Power of Guardianship assigned.

  • Loneliness and Guilt

Even if you have other help around, you can still feel solely responsible for caring for a loved one with cancer. Being a carer might take lots of hours out from your day or week so you feel you don’t have time to socialise anymore. Some people may avoid visiting you because they do not know how to interact with the sick loved one you’re caring for. This can leave you lonely and isolated.

You may feel guilty of being resentful and angry at situations or people, guilty about not doing enough as a carer or of forsaking your other family roles while taking up the role of a caregiver. You may even feel guilt when you feel you want to take a break from being a carer.

– How to handle:

Try to keep communications open with family and friends. Some days, when face-to-face meetings/visits are difficult, use other forms of communication like phone calls, video chats like Skype, or email and blogs, and other social platforms. Encourage a family friend or a mentor visit you in the house or call you every few days to check up on you.

Avoid using the words “should” and “must” on yourself. Try talking to the one you’re caring for about your feelings of loneliness and guilt. A chat with a counsellor or a religious mentor can help you process your emotions. Join local support groups and accept help from family members and friends. Some non-profit groups have volunteers you can talk to on the phone, online through forums or who can meet you in your home.

  • Anxiety and Depression

Financial burdens of caring for someone with cancer can leave you anxious and depressed. Not being able to do what you used to do before assuming the role of a carer can leave you feeling depressed. Likewise, knowing you are unable to do enough as a carer for your loved one can leave you anxious and depressed. Sometimes depression comes from the lack of sexual intimacy with a sick partner or even from the lack of appreciation.

Check for symptoms of anxiety: trouble focusing on even simple tasks, difficulty in making decisions and problem solving; feeling restless or excitable; tension migraines or headaches; disturbed sleep patterns; unexplained irritability and too much worrying; and aches and pains associated with tense feelings, like sore necks and muscles.

Watch for symptoms of depression: feeling tired all day; weight loss and loss of appetite; loss of interest in once enjoyable activities; feeling sad and lonely; and feelings of unworthiness.

– How to handle:

Seek financial advice from professionals. Talk to a social worker or to the doctor taking care of your loved one. They can help you claim benefits for yourself (especially, co-resident carers) in terms of housing, heating, and transportation. Accept the fact that you may not be able to do everything you once did before assuming the carer role.

Be easy on yourself; there is no perfect carer. Talk to a counsellor, a community nurse, other family members and friends. Try some exercises (20-30-minute walk or jog) or relaxation techniques. Keep doing little things you enjoy – reading a chapter of a book, gardening, listening to music, doing crafts, regularly and choose to do it alone, or better yet – do it with the person you’re taking care of.

Book an appointment with your GP, who may give you medications or offer you advice to help you cope with anxiety or depression.

  • Loss and Grief

Loss of a regular job, loss of meaningful relationships, feeling of losing the best part of your life, can happen when you assume the role of a caregiver. Feelings of anticipatory grief [6] can happen when you know a loved one with terminal cancer is dying.

– How to handle:

There is no single right way to handle loss or feelings of grief. The first step is to acknowledge the emotions and talk to someone. Helplines and online grief support are available. For more information in handling grief, click here. [insert link for grief and bereavement post]

  • Satisfaction

Not all effects of assuming the role of a caregiver are negative. Being able to care for a parent, partner, son/daughter, friend, or relative who has cancer can be self-fulfilling and satisfying. You find yourself learning new skills and showing your commitment and love. On difficult days, knowing you are able to make a difference in a life of a loved one may make everything worthwhile and rewarding.

More Coping Strategies

  • Know your limitations

As the conditions of the sick loved one changes, knowing to what extent you can do in caring for your loved one with cancer can help make the caregiver role clearer to you. Your limitations will depend on your current workload and situation.

List what your boundaries and limitations are. In so doing, you are able to identify which tasks you can delegate to other carers or family and friends. It will also guide you on which services (childcare, meals-on-wheels, transportation, or respite care) you might utilise to help provide better care for a loved one with cancer. For example, if you are uncomfortable in handling basic hygiene practices or intimate care, like bathing or cleaning up after using the toilet, seek help from a community nurse.

  • Allow room for growth

Don’t expect perfection in your tasks and roles as a caregiver. You may not know what to do or how to handle activities or things at first try. Keep learning and make allowances for mistakes and growth. Keep yourself informed by talking to the doctor or palliative care specialist who is taking care of your sick loved one. Talk and connect with families of cancer survivors. Join local and international support groups. Participate in activities that advocate cancer research and care.

  • Write on a Journal or Diary

Writing can be a physical manifestation of your day-to-day feelings and emotions while being a carer. You can use this journal to write down daily tasks and use it to do problem-solving. You can opt to make a separate journal for handling medications and emergency contact person and numbers.

  • Make allowances for your loved one with cancer

He/she may be undergoing extreme emotions and body changes that the cancer itself or the side-effects of treatments bring. Do not get offended when they lose interest in the food you prepared or can’t do the activities they used to do (e.g. sexual intimacy). They might be experiencing cancer-related fatigue [insert CRF article].

If they snap at you, withdraw emotionally, or openly express their dislike or unacceptance of help, learn to listen to what they’re really saying. They might be dealing with feelings of loneliness, depression, distrust or pride. First listen, then talk to them. If communication seems difficult, ask help from your health care team.

  • Work with a Health Care Team

As in any care for a person with cancer, you can seek help from a dedicated health care team. The Cancer Council provides a list of member of the health care team and their roles.

  • Make time for yourself

Take care of your body. Do regular exercise, eat nutritious food, and get adequate rest and sleep. Even if you do not have any existing medical condition, do not forget to get a regular check-up with your GP. Continue taking your prescribed medications. When conditions require it, inquire about proper lifting techniques and / or mobility and lifting aids. It is easy to forget about your own health when caring for a sick loved one. Stress can creep in and you can feel fatigued, burned-out, or get sick yourself. Remember you can only do so much. You can only adequately help someone else if you, yourself are fit.

Get regular breaks from caring by getting a family member, friends, or carers to pitch in and help.

  • Learn to ask help

Financial difficulties can be aided by various organisations that can help you manage debt and deal with refinancing, counselling, and budgeting. Talk to a social worker and your employer, and apply for practical and financial assistance as soon as possible. Some non-profit organisations, religious groups, or your local council can aid you financially.

You can avail of primary carer support for the Department of Human Services (Centrelink) [5] through the following schemes:Carer Payment (adult) – for full-time assistance carers in the same home of the ill person. Allowance is asset- and income-tested.

– Carer Allowance (adult) – for carers who give a significant amount of assistance, in their own home or in the home of the sick person. Payment is not based on means; you stay eligible even when working or receiving a pension.

– Carer Payment (child) – for carers who are unable to work due to full-time caring for an ill child. This allowance is asset- and income-tested.

– Carer Allowance (child) – for carers who give significant amounts of care to a child younger than 16 years old, while living under the same roof. The allowance is based on different factors.

– Mobility and Travel Assistance: If a person requires travel for cancer treatment, financial assistance may be obtained from local state or territory government. Travel costs can be partially reimbursed, if travel needs to be interstate.

You can also access different services for childcare, medication and equipment.

It is worthwhile to try applying for eligibility for a Safety Net Concession Card. This will help you with ongoing finances for cancer medications. Consider doing a fundraiser or crowdfunding [Insert link to crowdfunding article].

Outsource daily household chores like shopping, doing the laundry, or picking up the kids to paid or unpaid carers.

Use facilities like online shopping and home-delivery for basic food supplies.

  • Do the necessary paperwork

Consider encouraging your loved one with cancer to arrange for an enduring power of attorney. This will give the person legal “ability to act on someone else’s behalf in financial matters” (e.g paying bills, handling shares and properties, bank accounts) for managing money when the sick loved one has lost the capacity to manage them on their own (in case of accidents, deteriorating medical condition, coma, dying). [7,8,9,10]

Being a caregiver for someone with cancer can be both challenging and rewarding. Learning how to cope as a carer is important, as it will ultimately lead you to be an effective caregiver of a sick loved one.

http://www.cancer.gov/publications/patient-education/when-someone-you-love-is-treated.pdf

Extra Resources:

 

Cancer Council Support Groups

Face-to-face groups

Telephone support groups

Online discussion groups

cancerconnections.com.au

Beyond Blue
1300 22 4636
beyondblue.org.au

24-hour phone counselling service

Online and email counselling are available 7 days a week.

Kids Helpline for people from 5-25 yrs old
1800 55 1800 FREE
kidshelp.com.au

 

Lifeline – crisis and suicide intervention service
13 11 14
lifeline.org.au

Carers Line
13 27 17

www.humanservices.gov.au

Local Carers Association

1800 242 636

Aboriginal resources

Looking After Ourselves: Carers NSW

Aboriginal Cancer Journeys: Cancer Council

PBS Safety Net Concession Card

1800 020 613

www.pbs.gov.au

contact@carersnsw.org.au

www.carersnsw.org.au

Mon-Fri, 9am- 5pm (free): 1800 242 636 FREE

After hours service (Lifeline): 13 11 14

Emergency respite (free): 1800 052 222 FREE

– Topics include 6 Carer Phases, Carer Relationships

www.cancerconnections.com.au

Respite Care

63 days of residential respite care per year. For information, call

1800 052 222

Commonwealth Respite and Carelink Centre

http://www.healthdirect.gov.au/respite-care

CancerCare

800‑813‑HOPE (4673)

info@cancercare.org

Online Support Groups for:

  • Caregiver Support Group — Spouses/Partners
  • LGBT Caregiver Support Group
  • Pancreatic Cancer Caregiver Support Group
  • Teens Who Have a Loved One With Cancer Support Group
  • Young Adult Caregiver — Spouses/Partners Support Group
  • Young Adult Caregiver Support Group

http://www.cancercare.org/tagged/caregiving

CancerCare

http://www.cancercare.org/tagged/caregiving

Connect Education Workshops, Podcasts on the ff topics:

  • For Caregivers: Practical Tips to Cope
  • My Cancer Circle™: A Support Network for Caregivers
  • My Cancer Circle™: A Support Network for Caregivers
  • Helping Cancer Patients and Their Families Cope with the Stresses of Caregiving
  • Stress Management for Caregivers: Practical Tips to Cope
  • Changing Roles and Responsibilities for Caregivers
  • Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally
  • Survivors Too: Family, Friends and Loved Ones – Managing the Fatigue of Caregiving
  • For Caregivers: Coping with Holidays, Special Occasions and Birthdays, Throughout the Year
  • Survivors Too: Family, Friends and Loved Ones
  • Balancing Your Needs and Your Role as a Caregiver

Mobility Aids and Lifts

Independent Living Centres Australia

1300 885 886

Further Reading – References & Resources