CARING FOR CAREGIVERS

Aisling Lennon and Kathy O’Grady say when parenting a child with intellectual disabilities or supporting an aging spouse, it is important that caregivers take the time to consider how they care for themselves.

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On 2 July 2014, the Carers Association launched their Pre-budget Submission 2015, estimating that 187,000 people are providing care in the home in Ireland. Caring activities range from providing occasional assistance, to providing full-time care for an individual, be they a child or an adult. Caring can include supporting an individual with their physical care, assisting with the management of symptoms, and assisting with activities of daily living. Caring also involves providing emotional support for the individual. Providing care may continue even when an individual moves to a facility and is in receipt of more formal care. Whether parenting a child with intellectual disabilities or supporting an aging spouse, it is important that caregivers take the time to consider how they care for themselves.

What is care-giver stress?

Caregiver stress is the degree of physical and emotional strain experienced by the caregiver as a result of providing help to a loved-one. Stress can be manifested
as physical or emotional, in our thoughts or behaviours, or as a combination of these. Notably, our physicality, thoughts, emotions and behaviours are inextricably linked, and by affecting one aspect of stress (e.g. thoughts) there can be a knock-on effect to other aspects of stress.

Caregiving as a marathon

A useful metaphor to assist caregivers to manage feelings of stress is to think of caregiving as a marathon. Firstly, when running a marathon it is important to train to learn to pace oneself- If you start out too fast, you will quickly burn-out and have to stop. It is important to develop a steady running pace that will allow you to keep going for long distances. This also applies to caregiving. As a caregiver, it is important to learn to pace oneself to minimise stress and burnout. Practising self-awareness skills will assist with the development of a steady caregiving pace. Just as the marathon runner is required to identify if he or she is running too fast or too slow by recognising how they are feeling, it is important for a caregiver to identify how they are feeling and to recognise the early signs of stress. During the day, they should take a moment to pause, take a few deep breaths and ask themselves how they are feeling in that moment. This simple exercise can assist anyone to become more aware of how they are feeling, but to resist the temptation to pass judgement on their feelings, or to trigger a mental ‘to-do’ list of self-improving activities.

Caregiver stress

Physical strainEmotional strainThinkingBehaviour
Headaches
Apprehension

Worrying thoughts
Accident prone
Other aches
Anxiety
Worry about the future
Loss of appetite
Frequent infections

Apathy
Muddled thinking
Loss of sex drive
Taut muscles
Alienation
Impaired judgment
Insomnia
Fatigue
Irritability
Indecisions
Restlessness
Skin irritations
Low mood
Hasty decisionsDrinking/smoking
BreathlessnessDepressionMore

Secondly, when running a marathon it is important to learn the lie of the land, the up-hills and down-hills of the route. For a caregiver, the lie of the land is the condition, syndrome or disease of the person for whom they are caring. A caregiver can familiarise themselves with information in relation to the condition, syndrome or disease and learn what may lie ahead. For example, starting school can be an important time for many children with disabilities and their families. Knowing in advance gives you, as the caregiver, time to prepare. Remember, knowledge can empower caregivers and, in turn, it can empower the individuals they care for.

Finally, when running a marathon it is important to learn to replenish their resources along the way. A marathon runner will need to drink water as they continue along the course or they run the risk of dehydration. Similarly, it is important for a caregiver to identify sources of sustenance—activities, interests or people who can provide with a feeling of vitality. Recognising their importance and providing space and time for them helps to recharge one’s batteries and provide the necessary energy to continue along the course.

All three training points are vital when completing a marathon, and without them a runner would not be able to complete the race. Similarly, taking the time to pay attention to how a caregiver can care for his/herself will assist them to continue in this role with strength and vitality. Often caregivers would rather give than receive, however to ‘run the best race’ it is necessary to take in sustenance and to make use of all available supports.

Seeking more assistance

At times, some caregivers may experience what is known as caregiver burnout, which has many symptoms. For example, an individual may be suffering from feelings of dread, tension, irritability, anger or sadness. Often individuals feel fatigued and experience disturbed sleep. They may find it difficult to think clearly and to make decisions. They may find that it is difficult to spend time with friends, as they no longer enjoy this time. They also may experience health problems, such as frequent colds or flu. If a caregiver thinks they are suffering from caregiver burnout, they should discuss this with their GP or seek advice from a confidential helpline.

Example

Sophia is the full time carer of her 29-year-old son, Paul, who has a severe intellectual disability. For the last 29 years Sophia has cared for her son by herself and has been reluctant to ask for help from other family members. She has recently developed back problems, and feels like she has been suffering from one cold or flu after another. Furthermore, the opportunity has arisen for Paul to move into a supported residential facility where he will live with one other man in his early 30s. The facility is staffed 24/7 by energetic people who are keen to assist Paul to achieve goals of his choosing. Paul, however, has been reluctant to move and has been in poor form since these discussions began. One day, Sophia’s sister Joan noticed she looked under the weather and asked Sophia how she was doing? Sophia replied ‘I doing fine, I’m fine’.

Using the points in the article, what would we advise Sophia?
■ It is important for Sophia to learn to pace herself as a caregiver. One way to do this is to take a moment to stop and ask ‘how am I doing’. Sophia can practise being aware of how she is feeling, without judgment.
■ It is also important for Sophia to learn the lie of the land. One way to do this is to seek information from reliable sources (e.g. recommended websites, books or reputable magazines, local or national support services, professional advice from a doctor or psychologist). Specifically for Sophia, some information on moving from home to community-based residential services for an individual with an intellectual disability may be of some help at this time.
■ Finally, it is important for Sophia to learn to replenish along the way. Sophia was an avid runner in school, but since Paul was born she has not had the time. Her sister Joan has on several occasions offered to stay with Paul if Sophia wanted to go for a run and her friend Mary tried, several months ago, to get her to join the local running club. Sophia used to find that running cleared her head
and that she felt great afterwards, it gave her vitality. Sophia knows that to ‘run the best race’ she needs to take in sustenance and to avail of support.

aisling-lennon-for-webAisling is a psychologist in clinical training with the University of Limerick and HSE West and is currently working on placement in the midlands with the Muiríosa Foundation.

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