Caregiving: Caring for the self
Cancer is a life changer for the patient (Harmala Gupta, ICS, 2013,p.39) and the caregivers (Anuradha Mittal,ICS,2013,p.13).Caregiving is complex responsibility. In India, caregiving is largely by the family members as there are extremely limited alternative institutional facilities and welfare supports for those with long-standing illnesses like cancer. In addition, in India, families choose to care for the ill person at all stages of illness. However, the changes in the living situations is placing significant demands on the caregivers. Two of the situations living caregiving becomes difficult are living in urban areas and living in nuclear families. The lack of a supportive community in urban areas and the limited resources in a nuclear family makes caring a demand on the caregivers.
There is a large body of research pointing to the emotional impact of caregiving.
‘ Caregivers are also less healthy than noncaregivers, and have more chronic illnesses like high blood pressure, heart disease, diabetes and arthritis than noncaregiving peers. They may also suffer from poorer immune function and exhaustion. They may neglect their own care and have higher mortality rates than noncaregivers of the same age. Given these odds, caregivers need to take good care of themselves, and to reduce their level of stress, depression and anxiety (WFMH, 2013).
The National Cancer Institute (USA) recognizes the needs of caregivers as follows:
‘It’s just as important for caregivers to take care of their own health at this time. Family caregivers are affected by their loved one’s health more than they realize. Taking care of a sick person often causes physical and emotional fatigue, stress, depression, and anxiety. Because of this, it’s important for caregivers to take care of their own body, mind, and spirit. Helping themselves will give them more energy, help them cope with stress, and cause them to be better caregivers as a result’.
The Indian Cancer Society publication, ‘there is life after cancer’ ( Govil, ICS,2013) presents the experiences of 34 persons/families diagnosed with cancer. Here are some excerpts relating to caregiving from these narratives:
Ms.Shikha Shaukeen and Ms.Raj Rani,(ICS,2013) places the complimentary roles of the patient and caregiver beautifully as follows:
‘it is the survivor and the caregiver who together fight the battle, each offering love, support and encouragement to the other. There is suffering and pain, some shared and a lot kept from the other. No one but the survivor undergoes the physical pain, fear and trauma, that the cancer patient is faced with; the caregiver’s pain is mental and emotional. Not only does the caregiver help with the loved one’s needs and treatment, often taking critical decisions, s/he has to be strong one offering emotional support at a time when s/he is hurting too. It is not easy to evaluate the contribution made by a caregiver in contributing to the wellbeing of the .patient and restoring his/her confidence and faith. The caregiver applies a soothing balm to the lacerated psyche of the patient by giving loving care. In fact, the doctor and the caregiver make an excellent team; the former treating the patient’s physical sickness and the latter by restoring the patient’s shattered self-confidence and morale’(p.181)
Few of the other narratives, of caregiving from India, are: Ms.Anuradha Mittal(ICS,2013) shares the following feelings: ‘as caregivers, we also went through all the stages of shock, denial, anger, helplessness and finally acceptance. The moment the word ‘cancer’ is announced, your peaceful world is suddenly shattered. Everything seems to fall apart and the first reaction is “ it means the end of the road”(p.13).In an another narrative, Ms.Gurpreet Khaira, (ICS,2013) shares, ‘the most important thing was that I was getting the full support from my husband and both of my daughters’(p.36). Ms.Karuna Puri, (ICS,2013) writes, ‘it was my husband’s will power that helped me in my battle against cancer. ….he slept in my room throughout my sickness. He was there for me whenever I needed him’(p.91).
There are a large number of aspects of caregiving (ICS, 2013, NCI,2014, WFMH, 2014). The following sections focuses on the self-care of the caregiver. The following psychological measures can maintain/improve your emotional health (mental health). A caregiver can use one or more of these skills, as appropriate, to maintain their emotional health.
1.Knowledge: Reading and knowing about your family members illness, treatment and prognosis. Correct and full information will allow you to make the right decisions and decrease distress. Use all the available resources( printed matter, doctors, support group etc) to acquire the needed information about the illness, treatment and available support.
2.Making caregiving as a family activity: It is important to involve everyone in the family in the caregiving. Open and free communication within the family members decreases the stresses and strains. Making time for each other and sharing of information and emotions is very helpful. There are differences among families as to what information should e shared with the ill person. It is best to be honest with the ill person.
3.Sharing your feelings: Illness of you family member brings about multiple changes and challenges to life of patient and caregiver. Many of these are distressing. Keeping these feelings to your own self is not good. Sharing it with others, decreases distress. Do not consider it a weakness to express helplessness. It is normal to be distressed as a caregiver.
4. Joining a support group can be very helpful.
5.Writing down your feelings: In situations, when you cannot share your feelings with others, writing down your feelings and thoughts for at least 20 minute daily and on a regular basis, is another way of decreasing distress and gaining mastery over your emotional life.
6.Social supports: Illness has brought many changes in your family life. You and the family require all the support you can get. One method is to share information about your illness with others, especially those who can assist you, understand your needs and reach out to help you. More help you receive, you will fell less burden with the caregiving responsibilities.Joining a support group can be very helpful.
7. Relaxation/ Meditation: Mental and relaxation is important to be an effective care giver. Make rest/relaxation/meditation /prayer as daily part of your life and gaining mastery over your emotional life.
8.Exercise and physical activity: Physical activity /exercise has been recognized as the “miracle cure without a pill’. Being active, even when you have feelings of tiredness and fatigue is important. Develop regular habit of exercising for whatever period of time you can. This will help to fight fatigue, improve your appetite, lead to a better sleep.
9.Spiritual support: The pain of illness, uncertainties of the future demands that you find meaning to the changes and challenges to your life. Most people find solace and support from spiritual resources. This could be reading of religious texts, regular prayers, visiting place of worship, meeting a religious teacher etc. Please use whatever spiritual resources you are comfortable.
10.Finding “Happy moments”: It is important that you find ways of being happy. This could be in the form of listening to music, finding time for hobbies, playing games, being with people who give you positive feelings viewing TV, cinema etc. As far as it is feasible, maintain your interests and routines.
11.Focus on the present: The disruptions brought on by the illness of your family member, can make you feel helpless and loose confidence. It is best to avoid thinking too far into future as it is not predictable. Alternatively focus on the present. This you can do it by prioritizing areas for action, doing things according to plan and pacing of the activities. Remember, every time you complete a task you will increase your confidence and that will further increase your confidence.
Seek professional help:
The above measures will help you to master most of the changes and challenges of caregiving.
However, do not hesitate to seek specialist help in the following situations:
- You want more guidance to incorporate the above psychological measures to your emotional health;
- Your emotional distress is associated with many life challenges that you cannot handle;
- Your emotional distress is interfering with daily routines (self care, eating, sleeping, work) or your treatment;
- You have continuous feelings of tension, worry, irritability sadness, crying, anger, suicidal thoughts, that is causing distress to you;
- If the grief is prolonged, longer than six months.
Remember taking professional help for emotional distress is similar to taking help for physical complaints.
In conclusion, caregiving can be demanding on the caregiver. Caregiving is also fulfilling for the caregiver. Caregivers emotional health is important not only for the caregiver but also for the care receiver. Your goal should be to minimize the stress of caregiving and maximize the positive feelings of caregiving.
1.Indian Cancer Society(ICS)(2013) there is life after Cancer, Edited by Jyotsna Govil, Vitasta, New Delhi.
2.National Cancer Institute(NCI) (2014) Support for caregivers: When Someone you love has advanced cancer. US Department of Health and human Services, Bethesda,USA.
3.World federation of Mental Health(WFMH)(2013) Caring for the caregiver. Woodbridge, USA.