They are the Florence Nightingales of their families, who work silently, and cheerfully looking after their loved ones who may be old, or suffer from chronic illnesses, disabilities, mental illness, or the degenerative dementia.
While there is no day designated for Caregivers in India, the accolades and recognition for them come from their doctors, families and friends. "You are an angel," said the doctor to Nalini Kamath (name changed), every time he visited her home to check on Nalini’s older sister (88 years) and her 86-year old brother-in-law. Nalini, today in her mid-80s, has single-handedly looked after her loved ones for the past ten years.
"Every day needs to be Caregivers Day," remarks Gary E. Barg, CEO, Editor-In-Chief, Caregiver Media Group.
Says Dr. Mathew Varghese, Professor of Psychiatry, Consultant in Adult Geriatric Psychiatry & Family Therapy at NIMHANS, "Across the globe, the principal caregiver is generally a woman, and most frequently a spouse or a child. People in need of care generally prefer to remain in their own home environments."
Care giving of the elderly, especially with dementia, requires tonnes of physical and emotional energy.Unlike other diseases, dementia affects not only the patients, but can devastate the families as well.
Dr. Varghese was associated with a study on care arrangements for people with dementia in developing countries for which 706 persons with dementia, and their caregivers were interviewed. "The study indicated that most caregivers who lived in larger extended family households were associated with lower caregiver strain. However, levels of caregiver strain were at least as high as in the developed world. Many had cut back on work to care, and faced the additional expense of paid carers and health services."
Those suffering from dementia, have mood swings. The caregiver feels helpless because many a time, the loved one may not co-operate. Family caregivers of dementia patients have also to deal with the feeling that they are becoming friendless.
Hari Nair, who works with an IT company, says: "I salute my mother for her patience in providing my dad who has Alzheimer’s, the best care.But I can see the strain taking toll on my mother," Hari has moved to Bangalore to the corporate world from a theatrical career, so that he can be with his parents most weekends.
Nalini says: "There is no secret to coping with this tough job. Taking care of yourself is crucial to success." This organised octogenarian found that setting a routine stood her in good stead.
Hari agrees: "My mother completes the tasks for my father with hired help, and then she relaxes, though not for long because my father likes her to be around. He feels secure if she is near him."
Most caregivers don’t like others to know that their loved one has dementia. Says S. Premkumar Raja, Director, Nightingales Medical Trust, "There is a stigma attached to dementia. There is a need to make the public aware of dementia."
To provide more information on dementia and to give caregivers a support network, Nightingales, which is involved in elder care, started the Bangalore Chapter of the Alzheimer’s & Related Disorders Society of India (ARDSI). Nightingales and Bruhat Bangalore Mahanagara Palike (BBMP) recently opened a day care centre for dementia and Alzheimer’s disease.Every second Saturday, from 3 pm to 5 pm, caregivers have an opportunity to meet and share and learn from each other.
NIMHANS also reaches out to caregivers on first, third and fourth Saturday between 2 pm and 3 pm for a 30-minute group session at the geriatric clinic. "The care that an Indian family gives is highly commendable. There are some who don’t want to come to terms with dementia.The Saturday sessions help the caregivers. We also give them information on support groups and tell them about the welfare measures," says Dr. Varghese.
Geriatrics specialist at Wockhardt Hospital, Dr. K.N. Manjunath advises caregivers to understand the illness.He says, in the case of dementia, the patient goes through the loss of memory and intellectual functions, behavioural problems, and not been able to take care of themselves. With the increase in nuclear families, there is a need for support in the form of hired help and support groups where the caregiver can express himself.
"The family care-giver definitely feels fatigue, both physically and mentally, and then a love-hate relationship develops. Don’t look for magical answer and clues. No situation is the same.
There is no perfect medication." Manjunath suggests that the caregiver takes breaks. "Learn to ask for help and delegate responsibilities."
Dr Varghese advises caregivers to talk about the illness. "You may feel inhibited, or sometimes ashamed, but talking helps. Find leisure in exercise, hobbies, support, prayer, and humour too."
Dementia is a disease that dims bright minds
Today (September 21) is World Alzeihmer?s Day. Every seven seconds one person is diagnosed with dementia, which causes Alzheimer?s Disease. In the world, 24.3 million people are affected by dementia. In India the figure is 32,00,000, that is expected to double in the next 20 years. Bangalore has 30000 reported cases.
Dementia affects mostly people over 60 years of age. Therefore the symptoms are often confused with old age and senility, and so medical care is rarely sought. The elder undergoes memory loss, and is unable to recall familiar names and places, and sometimes cannot recognize family members. The patient gets dependent on others for simple tasks like eating, bathing and brushing teeth. Sometimes, patients undergo personality changes that they cannot control. Their behavioural problems can be emotionally draining on the person / family who cares for them. Dementia can be diagnosed through tests including The stages of dementia can be delayed through tests and medication.
Dementia is not a disease to be ashamed of. Care giving of the elderly, especially with dementia, is one of the hardest jobs that require tonnes of physical and emotional energy, even though it can be emotionally fulfilling. Seek help to help your loved one.
At the ARDSI Conference on September 27 in Hall 2, there is a special session for caregivers.
Dementia Helpline of ARDSI-Bangalore Chapter
Helpline Numbers 9342730936 / 9342730959
Nightingales Medical Trust — 9:00am – 9:00pm
All 7 days of the week; Sandhya Kirana-412484489
NIMHANS ? Caregivers meet first, third and fourth Saturdays between 2 and 3 pm on Saturdays, but five consultants are available all days of the week — 26995540-46
St. John?s Medical College: Thurday afternoons at 2 pm 25530724 / 22065000
M.S. Ramaiah Memorial Hospital ? 23608888/23609999
This article was published in Hindu dated Sept 18, 2008
Author: Matilda Yorke- Bangalore