Providing care, for caregivers
A caregiver is anyone who provides care and assistance to someone else. Caregivers may provide support to a spouse, parent, sibling, family member or friend. Caregivers provide physical, emotional, social, spiritual, financial or practical support to a loved one with cancer. It is common to feel challenged by the responsibilities that come with the caregiving role, especially when you may not be prepared or be ready for it. There is no right or wrong way for you to feel as each person is different.
Almost everyone will be a caregiver at some time during his or her life. Being able to provide good, reliable and consistent caregiving support to your loved one with cancer can have significant impacts on his/her wellbeing. While it can be challenging and demanding, it can also be rewarding or fulfilling.
The best place to start is by trying to understand what your loved one may be going through in facing a life-threatening illness. It is important for caregivers to be aware of how cancer can affect their loved one, so that they can understand his/her needs and provide him/her with appropriate support to meet those needs. For more information on the various aspects that a cancer patient may be affected in, it may be helpful to take some time to explore the other sections regarding cancer. Here are some common tasks you may be required to undertake in caregiving:
- Physical/ ractical needs: Coordinating the care of your loved one and arranging your loved one’s schedules, transport and visits to the hospital. Helping your loved one in day-to-day household activities and running errands for them. Feeding, dressing and bathing your loved one and lifting your loved one from the bed if he/she is immobile.
- Health/medical needs: Managing, recording and reporting the treatment side-effects that your loved one may be experiencing. Ensuring that your loved one has sufficient nutrition in his/her daily meals and reminding him/her to take his/her food and medicine on time. Keeping track of medicines and test results and giving medicines to your loved one.
- Emotional needs: Lending your loved one a listening ear and providing him/her with love and support. This may include attending to his/her feelings, especially during his/her lowest and most vulnerable moments. Helping your loved one search for support groups where he/she can connect with other cancer survivors in the community. Keeping family and friends informed so that they can provide appropriate support to your loved one.
- Spiritual needs: Helping your loved one find meaning in his/her illness. Keeping him/her connected in his/her religion if it gives him/her comfort and meaning. Celebrating religious festivals with your loved one.
- Financial needs: Dealing with the financial and legal issues such as managing insurance claims. Discuss and plan for financial matters involving will, assets, trusts, joint properties and bank accounts.
Taking care of yourself as a caregiver
Cancer can affect the family’s wellbeing, identity, roles and day-to-day functioning. It can be tiring and can affect your health if you do not have time to exercise and eat well. Providing care for your loved one can also stir up various emotions as you deal with the day-to-day demands of caregiving. It is normal to lose patience and feel frustrated as this can be a stressful process. Sometimes, you may also have to deal with changes in where you spend your day or where you live when you care for your loved one, and may experience having less time for other personal commitments. Such changes can be challenging and may impact you adversely.
Identify your limitations, strengths and resources. Recognizing personal strength and resources can help you identify key areas of support to meet future caregiving challenges. Recognizing your limitations can help you flag out signs when you need help, as well as to be aware of your caregiving limits. Knowing your limits can also help you identify activities that your loved one can carry out independently while you take a break. This can help to prevent burnout. For a start, do consider asking yourself some of these questions:
- What is the amount of care that my loved one needs to live as independently as possible?
- What would my loved one’s preference be?
- How much of my attention, time and energy is needed to provide my loved one with the necessary care?
- Am I able to cope with other commitments?
- Do I have the skills needed to provide my loved one with the appropriate care?
- How can I improve myself as a caregiver?
- What am I good at as a caregiver?
- Am I being realistic about how much I can do in a day?
- What other help might be available? What or who do I need to complement my caregiving duties and tasks?
- When are those moments I know I would need help?
- How much will it cost to care for my loved one?
- What financial help and community resources might be available?
You may be experiencing caregiver stress if you experience any of the following:
- Cannot concentrate or think clearly or remember things or make decisions.
- Feeling overwhelming fear, anxiety and/or distress most of the time.
- Not able to eat well or get sufficient rest or sleep.
- Feeling easily irritated or angry more often than usual.
- Feeling depressed persistently for two weeks or more.
- Feeling helpless about how to care for your loved one.
- Always worried about finances/ not having enough money
- Always quarrelling or fighting with the care recipient and/or family members.
- Feeling like withdrawing from social events more often than usual.
- Feeling like you are worthless and/or sad all the time.
- Feeling like nothing you do is good enough.
- Experiencing poor health.
- Always experiencing self-doubt and not able to make any decisions.
- Feeling guilty or trapped by your situation.
- Having thoughts of harming yourself or others or committing suicide.
- Not able to find any time or make space for yourself and other loved ones/ family members.
Some coping strategies include:
- Set aside your own self-care boundary: know when to say “no”, let go of thoughts and feelings that are unhelpful, set aside “me” time for self-care, learn some stress management techniques such as mindfulness, deep breathing and meditation.
- Communicating your needs: Recognize that good and bad news in the course of the cancer journey may affect you. Reach out for support when needed. Advocate for yourself by asking for help, re-establish meaningful relationships and connections you may have lost while caring for your loved one, and be willing to share openly your worries and concerns with trusted individuals.
- Take care of your emotions and mental health:
- Acknowledge and accept how you are feeling. Give yourself permission to release your emotions in a safe and appropriate way. Find comfort in the encouragement and support of others.
- Remind yourself that you are doing the best you can and it is the most anyone can do. Focus on appreciating what you have and making healthy changes in the present.
- Acknowledge that life with cancer involves changes that will require an adjustment process to create a “new normal”.
- Remember that you also have your own needs. Try to build in some respite time; give yourself time and space to do something relaxing and enjoyable that makes you happy.
- If you have a religion or philosophy, find comfort through your beliefs.
- Try not to take things personally as your loved one may vent fatigue, frustration, pain and fears on the ones closest to him/her.
- Try to reframe negative thinking perspectives more positively.
- Manage your own expectations and be realistic of what you can and cannot do, and set feasible goals. Be focused on living in the present than in the past or future. Break big tasks down to manageable smaller steps.
- Take care of your physical needs: Avoid wearing yourself out by getting enough rest. When you are physically fitter, your body is better able to handle stress. Consider getting some exercise in the midst of your caregiving duties. Eat on time and healthily. Take care of your own health needs.
- Get practical help to manage some of your daily routines: You can involve other competent people/ alternative services to be part of your caregiving team, more can be achieved and the caregiving tasks will be more manageable. It will also help you better balance your caregiving role with other roles and responsibilities in your life and find some time for yourself.