Recognize burden among caregivers

Having looked at the impact of caregiving on physical health in my last article, it is time now to turn to the critical issue of the mental health of caregivers. All too often in our work, we hear of caregivers becoming depressed, anxious or withdrawn and experiencing poor mental health, due to the immediate worries or longer term consequences of caregiving.

Caring for someone else is demanding, and all caregivers feel overwhelmed at times. Caregivers must not be made to feel ashamed of these feelings. Although well meaning comments such as “You are an angel to care as you do. I don’t know how you do it,” or “Special children are given to special parents – she was meant to come to you,” may make a caregiver feel encouraged, they can just as often do more harm than good. Caregivers are made to feel they should not complain or that they are inadequate if they find their caregiving role hard.

Caregivers may find particular aspects of caregiving especially difficult, for example, dealing with challenging behaviour of their wards or coping with regularly disturbed sleep. The longer a person provides care, the greater the challenge as stresses build up. Particular relationships can result in additional distress, for example, caregivers who look after their spouse often report increased depressive symptoms, as do older caregivers.  

If caregivers are unable to share these burdens, they may suffer from increased anxiety, stress and isolation. It is important to be able to share burdens practically. For example, receiving respite from caregiving, or having someone assist around the house can help. Equally important though is having the opportunity to offload burdens through emotional support structures. This could be through a neighbour or friend who will listen in a non-judgemental way, being part of a self-help group of fellow caregivers or having the chance to undergo counselling with an experienced professional.

Unchecked and unsupported, the mental and emotional burdens experienced by caregivers can develop into significant mental health problems, marring their own life and that of the person for whom they care.

So let’s look at a few of the key challenge areas. Perhaps you will see a way you can help a caregiver you know.

Stress and worry

The responsibility of caring often makes a caregiver feel stressed and worried. They typically spend a lot of time thinking about their loved one’s illness and the caregiving activities they need to complete, making it hard for them to switch off. Caregivers often have difficulty sleeping, eat too much or too little and find their mood is affected. Feeling this way over a long period of time can have a detrimental effect on a caregiver’s mental health and they can become unwell.

Social isolation

Many caregivers find it hard to make time to socialise or carry on with hobbies or interests. In our project areas, 88 per cent of the caregivers reported they had no time for themselves. They may also feel guilty taking time out for themselves. Concern about stigma, either towards the caregiver themselves or the person for whom they care, means caregivers don’t talk to others about their caregiving responsibilities. This can make them feel very lonely and ultimately lead to mental health problems such as anxiety and depression, conditions experienced by 77 per cent of the caregivers with whom we work.

Frustration and anger

Caregivers can feel very frustrated and angry, especially if they have had to give up parts of their own life such as a career. They might feel they have been given no choice about becoming a caregiver. In some cases, this anger can be directed at family members or at the person receiving care. This in turn engenders guilt in the caregiver and a vicious circle of destructive emotions starts.

Low self-esteem

Being a caregiver can have a huge impact on self-esteem. Caregivers may feel they are not worthy of care and attention, and that all their time should be focused on the person for whom they care. It is common for caregivers to lose confidence in themselves and their abilities to do anything outside of their caring responsibilities.

Money worries

Caregivers typically need to pay for extra care, medical costs, therapy, equipment and transport. This can put a strain on finances, and may mean they have to cut back on other things, causing practical issues and additional stress. Many caregivers struggle to cover costs, and get into debt. Nine out of ten of the caregivers we regularly interact with report money worries.

Caregivers both need and deserve support in order to protect their mental health. Caregivers will only receive this kind of vital care if, as a society, we start to talk openly about caregiving and recognise the extent to which it is present in our communities. After all, each one us in our lifetimes will be either caregiver or cared for, if not both.

Dr Anil Patil is the Founder and Executive Director of Carers Worldwide. Carers Worldwide highlights and tackles issues faced by unpaid family caregivers. Established in 2012 and registered in the UK, it works exclusively with caregivers in developing countries. Dr Patil co-authors this column with Ruth Patil, who volunteers with Carers Worldwide.

For more information you can log on to Carers Worldwide.You can write to the authors at columns@whiteswanfoundation.org

The opinions expressed in this column are those of the author and do not necessarily represent the views of White Swan Foundation.