Suffering from a chronic disease that leaves you bedridden or dependent can be difficult, but, at least, your problem is recognised and its challenges are anticipated. However, what gets downplayed is the stress undergone by those who care for such persons. In our society especially, we tend to dismiss even prolonged care-giving (which may include anything from bathing a sick person to keeping him company for long hours) as just ‘fulfilling a duty’.
Impact of stress
Researchers have found that chronic stress in caregivers can lead to lowered cell-mediated immunity and high blood pressure. A U.S. study found that about one-third of the caregivers to people with Alzheimer’s and other dementias have symptoms of depression.
Caregivers can end up feeling irritable, exhausted, discontented, and sleep- disoriented. “It is very difficult for them to see somebody they had known as intelligent and outgoing get reduced to this dependent state. The helplessness hurts, more so, when the ailment gets progressively worse. There is also guilt when caregivers lose their temper when dealing with adamant and uncooperative wards. Then, there’s anxiety about ‘Who will take care of me if I were to fall sick?’”, says Lakshmi Vijaykumar, consultant psychiatrist and founder, Sneha.
“It can be a thankless job, if the person being cared for is not in a condition to appreciate the help and the support. Sometimes, he even blames the caregiver for his problems. That is the toughest thing for a caregiver to cope with,” says R. Mangala, consultant psychiatrist, SCARF. There’s another danger. “If pre-occupation with the sick person results in the rest of the family getting little attention, it can lead to marital and other conflicts within the family,” warns Dr. Lakshmi.
The caregiver begins to cut down on outings, travel and other activities, and frustration builds up. Pent-up frustration might even make the caregiver get angry with the very person they are caring for, or themselves. “Those providing care over a long period of time should set aside at least half-an-hour a day, and one day a week to go out and meet people or just spend the time doing whatever they like. It may not be easy, but such breaks have to be worked out,” says Dr. Lakshmi.
Counselling by a professional to sort out those mixed emotions could prove to be of immense help to the caregiver. And while handling difficult situations, take deep breaths to calm down, suggest experts.
The caregiver could be a parent, spouse, sibling, relative or a friend. But no matter who, they are nothing short of heroes. “We tend to lavish all our attention on the patient. We should take time to recognise the caregiver too,” says R. Parthasarathy, general physician and social activist. “We see so many caregivers take care of sick family members or even friends for years, without expectation and with total acceptance. They deserve to be honoured,” says P. Karpagavalli, coordinator, clinical services and case manager, Schizophrenia Research Foundation (SCARF), which has instituted the SCARF-Maitri awards (SCARF) for caregivers.
Here’s the story of courage of one of the awardees — Shamshad Begum. Of her four sons, two have schizophrenia. Her husband was mentally ill, committed suicide earlier. Her two other sons have been a pillar of support though, and have decided not to marry until they have made provision for their brothers.
“Shamshad is an inspiration. Despite the trauma, she tirelessly supports her sons. She never loses hope in them and is so proud even at the smallest things the boys achieve,” says Dr. Mangala.
Are you a caregiver?
* De-stress through meditation and regular exercise.
* Set aside time to pursue activities you enjoy.
* Stay in touch with friends and colleagues.
* Network with support groups and share your experiences and ideas.
* Vent your feelings to persons close to you. If agitated, seek psychiatric counselling.
* Establish a supportive network of family and friends who would be willing to help, whenever you need it.
* Hire trustworthy part-time attendants or avail daycare facilities occasionally.
* Plan your finances.
* Stay informed about the disease and the treatment, to deal with the situation better.
* Don’t feel guilty, ashamed or upset about the challenging behaviour of your ward.
* Investigate whether any specific medical problem is causing it.