It is extremely important for caregivers to maintain their own emotional and physical health and wellbeing to be able to effectively help others, writes Usha Ravi. Also, take the simple self-test below to find out if you are a satisfied or fatigued caregiver.
The art of being kind, caring, loving and understanding - all of which will be ineffective if one loses oneself in this process of caring. Hence, to preserve oneself, self-care is crucial. Self-care is considered as simply giving the same kindness and compassion to one’s own self that one would give to others.
A carer is an individual who provides care for their own family members or friends. This is an unpaid invaluable precious task or role assumed by the carer. The process of becoming a carer can be by choice or often happens by chance. Thus, a caregiver’s journey is most often found to be an accidental or diagnosis triggered one rather than a planned one. It can be viewed as a lifetime opportunity by those who have taken it by choice and for others it is often seen as lifetime imposition.
According to Australian Bureau of Statistics (ABS):
- There were 2.7 million unpaid carers in the year 2015 (Total population of Australia is 24.7million. So 1 in 10 is an unpaid carer)
- About 55% of these carers put in at least 20hr/wk. of care
- More than 2/3 of primary carers were females.
Caregivers are the main links or touch spots across all health care services, yet they journey alone and are acknowledged very little. Tomorrow, if the caregivers were to stop caring for their loved ones, the health care system will crumble.
What increase the burden of caregivers are the myths surrounding caregiving.
Myths of caregivers
a) Carers are not trained, only trained people can provide extraordinary care
Caring and care giving is not a specialty that people have to major in from schools or universities. Care of a terminally ill or severely disabled individual cannot be concluded or completed in hospitals alone, it is extended at home where the care givers take over from the professionals. This extension of care at home does not have to be extraordinary, but to be remarkably ordinary. The true essentials of care giver are being attentive and willing to be able to continue to provide ongoing care.
b) Caring for own family members will be too over taxing
Acknowledging that it is normal to experience intense feeling when caring for someone close to their heart is the first step. That overwhelming feeling of compassion, sense of helplessness of not being able to make their suffering better can cause one to become numb. This can push one to be extremely vulnerable and emotional besides physically demanding. But with due introspection and support seeking one can surface out of this.
c) Care is directed to only elderly people
Care is not defined by age, status, occupation or gender. Neither does loss, illness or grief strike only when people get older. Care provision is required across all ages, for varying levels of care and varying disabilities and underling conditions.
d) Carers have to be free of all other commitments
Carers are not custom made or designed, it is a natural phenomenon to care for one another within family, within friends circle or within a society. Carer’s life does not cease to exist when caring for others begin. The process of care giving is not simple, but all of these happen simultaneously. Caregivers are not free of need and care themselves, hence the focus on care of the care givers.
e) Feelings are contagious, hence to be contained or must be hidden and kept away from expressing.
On the contrary research does show that care givers who hide or repress feelings that are associated with care giving are most likely to develop or experience deeper negative emotions. Repercussions are that caregivers lose their sense of balance and suffer, struggle with relationship and as a result family, etc. is affected.
f) Happy marriages and well-adjusted relationship will handle such stress well. Challenges faced by a care giver
Assuming the role of a carer begins with an accidental trigger or diagnosis and/or a dramatic event. At this juncture, there is virtually no time is given to the carer to understand the situation. Carers face enormous challenges in caring for their loved ones. There is a great sacrifice of their own time, pleasure, health and well-being. Often their relationship with rest of the family or immediate family members can be detrimentally affected. Caregivers then start living in survival mode.
Understand the experiences of these care givers who will be engaged in providing very complex care needs such as care of devices that assists with breathing, feeding, eliminating, etc. Without adequate resources many could be stretched to the breaking point.
Some of the emotions that caregiver face and tips to deal with these:
- Anger & Frustration
- Depression & Anxiety
- Shame & Guilt
- Stigmatised & Ostracised
- Lifeless or feeling limp
- Having trouble sleeping
- Unable to attend normal work
- Altered or heightened dysregulation of natural immunity
- Exhaustion and burnout
What is so poignant about this state of physical, mental exhaustion is that it mainly affects people who are highly committed to their work. Hence, it is vital to understand the above right from the outset and acknowledge it.
Test Yourself
The Zarit Burden Interview, a popular caregiver self-report measurement scale used by many aging agencies, originated as a 29-item questionnaire (Zarit, Reever & Bach-Peterson, 1980). The revised version contains 20 items. Each item on the interview is a statement which the caregiver is asked to endorse using a 5-point scale. Response options range from 0 (Never) to 4 (Nearly Always). While the Zarit Burden originated with measuring caregiver burden of dementia patients, it has been tested with other caregiver groups.
Click here for the Zarit Caregiver Burden Scale.
There is another 18-item, caregiver self-report measure devised by the American Medical Association as a means of helping physicians assess the stress-levels of family caregivers accompanying chronically ill older adult patients to their medical visits. A simple scoring system allows family caregiver themselves to score their results and to determine whether or not they are highly stressed.
The questionnaire and scoring forms, available in English and Spanish versions, are downloadable for free from the American Medical Association website.
Tips for carers for health management:
- Work with purpose
- Begin the conversation in honest and empathetic way
- Learn and use open ended Q
- Identify & recognise the compassion fatigue setting in
- Have creative outlets
- Get support from resources
- Forgive yourself - have realistic expectation of yourself
- Think like a toddler – redirect the behaviour, treat them with respect
- Impatience and frustrations stems from exhaustion, take a break, regain your perspective and refill your well of patience.
- Not to feel guilty or disgust of any other negative emotions during this journey of care giving
- Access and secure resources (personal, equipment, consumables)
- Make a list of what they want to do or where they want to go, make the most of the dying days, helping your loved one to die the way they want to do something that we can all do to show our respect.
- Indulge in 15 min of your own care in a day, it is not selfish at all, creates space for peace in yourself, self-care activity
- Be an attentive listener, be a love sponge, be a blank board, even if you can’t fix or change it just listen. Silence heals. It is biological and emotional healing. Be fully present.
- Care giver needs to seize the moment.
- Living in the NOW, slow down and reach out and actually exist in the given moment.
Conclusion:
Most of us are scared of not death but the experience around death. How will it be to die? There is a key distinction in this. We have to here tease out the suffering that can be changed rather than the one that cannot be changed. To confront these challenges policy makers should look beyond the traditional care delivery pathways and recognize that informal care will form the foundation of care. Be that person to bring about deep societal structural change, by changing mindset. Start today, recognise, support carers, become part of their day, volunteer to care for a carer today.
References:
- Australian Bureau of Statistics (2015) Survey of Disability, Ageing and Carers.
- Deloitte Access Economics (2015) The Economic Value of Informal Care in Australia
- https://www.healthdirect.gov.au/respite-care
Born and schooled in India, Usha Ravi works in the area of critical care as an Advanced Nurse Practitioner (ANP) in Paediatric Critical Care in Australia. Supports community work at various levels. She truly believes clinical practice is her passion. In service for the last 25 years, she performs music to re-energize myself to embrace the everyday challenges. Together, with her husband and children and a very hyperactive working dog, they make a lovely home leaving her no time and reason to complain.
