Caring for the caregiver

Michelle Chin explains how people can look after themselves when tending to terminally ill family members

Tending to loved ones who are terminally ill may be meaningful, but caregivers must not neglect their own well-being. PHOTO: THINKSTOCK

The end-of-life phase can be less traumatic when a person has the support of caregivers and family members. But this support group needs assistance to be able to handle the task better.

Caregivers experience higher levels of stress when they have to manage multiple commitments such as work duties and caring for their young children.

The 2010-2011 Survey on Informal Care- giving, based on research on the needs of care recipients who needed human assistance with at least one daily living activity, was commissioned by the former Ministry of Community Development, Youth and Sports (MCYS).

It showed that nearly half - or 45 per cent - of potential caregivers said they needed help or training to properly care for an elderly family member, aged 75 and above.

Those who reported significantly higher stress faced disrupted schedules, as well as health and financial problems that resulted from their caregiving duties.

Dealing with upheavals

One caregiver, who wanted to be known only as Irene, learnt to deal with the upheavals in life when she was caring for her 73-year-old mother with terminal colon cancer.

The 37-year-old working mother of two had to be the main caregiver to her parent as she is an only child.

To get by, she relied on a domestic helper, and a palliative care team that visited her home regularly.

"I had to continually boost my mother's morale throughout her long battle with cancer.

"This included lending support during chemotherapy as she suffered the physical side effects," she says.

The toughest part of the process was having to deal with her mother's belief that terminal disease, such as cancer, was divine punishment for those who were evil at heart. The elderly woman was indignant and did not think she deserved to suffer the illness.

"Her well-being was further aggravated by her preconceived notions, coupled with the psychological burden of not knowing if the treatment will offer hope towards recovery," adds Irene.

As her mother's condition worsened, she became resigned to the eventual outcome.

Looking back, Irene feels the process taught her the importance of being prepared to deal with such situations in the future, and lead a more meaningful life.

She says: "Although I am still relatively young, I have started on making a will and looking at insurance coverage to help my loved ones.

"Sometimes we may think we are in control of all things, but in reality, we are not. What we will encounter, and when we will face death, is beyond our control.

"So it is important to me that I invest my time and effort in things that truly matter, so that when the end comes, I will have few regrets."

Find a sensitive approach

Caregivers providing end-of-life care may also need help to recognise when the end is near.

To identify the right time to engage patients on their preferences, professional palliative care providers say that one sign to look for is someone's willingness to discuss funeral plans.

Having a desire to broach the subject indicates that the person has accepted that his death is near. Caregivers should pay attention to his preference for rites, instead of dismissing such talk as taboo.

Nonetheless, bringing up the topic of death should not be rushed.

Says Mr Daniel Koh, a psychologist: "Although family members may be anxious, it is best not to transfer your own emotions onto the patient. Listen for cues that he is ready to talk, and let him lead as this gives the patient a sense of control.

"Also address your own emotions and what you want to say before you engage the patient. It is best to start from how much the patient knows about his physical condition and situation."

Recognising physical signs of death will help caregivers provide the right kind of comfort to the dying person too.

Medical conditions vastly differ from one person to another, and professional medical advice should be sought for health-related issues.

The National Institute on Aging in the United States provides a rough picture of the mental, emotional and physical issues of the dying.

Mental and emotional issues may include worrying about those being left behind and the fear of being alone at the final moments.

Physical issues may include pain, breathing problems, skin irritation, digestive problems, temperature sensitivity and fatigue.

Looking after the caregiver

When dying becomes a long-drawn-out process, learning to spot the signs of caregiver fatigue can ensure you are better positioned to provide the optimum level of care to your loved one.

According to Help for Cancer Caregivers, a collaborative initiative by various organisations such as Anthem Foundation and Michigan State University, caregiver burnout is defined as "a state of stress or distress for a prolonged period of time".

The stress happens when caregivers feel they do not have time to do all that is asked or expected of them.

They may feel irritable, tense, unfocused, frustrated or fearful. Other problems may include sleep issues, headaches, muscle tension, weight loss or gain and a host of other health-related issues.

Caregivers can benefit from a support network that divvies up various duties, freeing up time for primary caregivers to recuperate and tend to their own needs.

In fact, caregiving roles can be divided into tasks such as purchaser, financial coordinator, domestic helper supervisor and actual physical caregiver.

With the right amount of preparation and help, families will find that the journey to acceptance and finding a balance can be achieved.

Visit www.nirvana.com.sg for more information.

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