CAREGIVING –AN ART AND A SCIENCE AS WELL.
-Balbir Singh Rawat, M.Sc., Ph.D.
Distinguished Ladies and Gentlemen,
Kindly permit me to share with you my experiences, in making beyond the normal efforts, in caregiving to the elderly, that is, to my old own wife suffering from Alzheimer’s disease.
I was 78 yr old and my wife 72 when Alzeimer’s dementia struck her. At the start she was showing signs of forgetfulness and sometimes unusual behaviour. We all in the family took it as a routine process of “Sathiyana”, ie., entering the sixties of age. Sometime later, when the disease advanced, clinical investigations revealed the disease and only then we, the family members and close relatives, became serious about her health. Being a retired person, and her spouse of fifty four plus years (in 2006) and all the children away on jobs and with their own families, it fell upon me to be her main caregiver. I braced myself up to meet the challenge.
My oldest daughter and her family, who live in the same town, have been a great support emotionally and morally , youngest daughter helped me by sending books and printed material on AD from Canada, a country where aged are taken good care of by the government as well as the society. The other two, being away, with regular contacts on phone and as many visits as possible for them. Gradually, I succeeded in convincing myself that I have to take good care of her I have to be her brain, thinking, deciding and taking suitable and helpful decisions on her behalf, and to take care of her all physical, social, emotional and spiritual needs, like a mother takes of her pet child: selfless affection, all the needed care and protection, assurance and encouragement to feel that she is loved by all, is living with her deserving dignity, free of any fear, of any shadow of negligence and ignore. AD patients are very sensitive towards self esteem, security and emotional assurance. They hate memory tests. This became a challenging task for me to prevent every single individual, who so ever he/she may be to ‘investigate’ her, sometimes sternly. Every well wisher does so invariably, though inadvertently.
Alzheimer’s is such a devastating disease that that it gradually and systematically destroys the memory in a definite pattern. The last entry is the first that is erased. This erasing of recorded memory goes back in reverse gear. So mentally the patient goes back to middle age, youth, adolescence, child hood and infancy. I saw this happening to my wife for full six and a half years. This is a challenging task to give care to an old person’s body and mind taking a backward journey and behaving according to the respective phases. There are numerous occasions of weird behaviour, many a times annoying, so many times damaging and often hurtful to own selves. They never hurt anyone else. They may resort to tearing clothes, removing buttons and zips, trying to twist spoons and forks, eye glasses etc. It is quite common that they forget the location of their own homes, do no-destination wandering inside the house, or slip out of the house if left unattended. I have heard of cases where old parent have slipped away and got lost for all times.
This makes care-giving a very special task for the main care giver, as well as for the members of the family living with the person and also for the hired help if any. (The hired help needs the right natural aptitude and good nature with a will to learn and be trained).The specific features of the attributes of a good care giver are:-
1. Mentally merging one’s self into the self of the patient by acquiring the skill of pre sensing the needs of the afflicted person at any given time of the day or the night.
2. Acquiring the desired skills and techniques from printed media, from doctors and from result oriented self devised methods of trials and adoptions of the best fitting ones to the personality, comfort and self esteem of the patient.
3. Being fully convinced with the fact that the patient is a living being, with feelings, emotions and sensitivity, trying to be her/his normal, but is helpless in preventing the AD induced corrupted brain signals and commands, thus totally unaware of the weirdness of his/her actions.
4. Modifying one’s own personal temperament of actions reactions to that of a two-body-one-mind ways of thinking, deciding, speaking, behaving and acting. This has to be done day and night, as they say, all the 36 (thirty six) hours of a day, all the days of the year and all the years of the life of the patient. A tremendous task it is, but not at all as difficult as it appears from the ‘side galleries’. Hundreds of thousands of caregivers are willingly doing the job successfully and gracefully all over the world. It is a self accepted duty, responsibility, compulsion, satisfaction, social recognition. It is mixture of these all and, in addition, enrichment of humane feelings, feelings of soul elating fulfillment by helping the one who is helpless and prone to self-hurt. It is a call of conscience. You get into it with whole heart and believe me God gives you all the power and strength to be a good caregiver. (A self support group of caregivers to the elderly is a must in every locality of the country, to be each other’s source of encouragement by mutually sharing the experiences and care giving skills).
5. Taking good care of self and keeping fit and fine physically and cool and composed mentally, all the time is an essential prerequisite of a care giving capacity and quality.
It is a tremendous task to take care of an old person who cannot even lift his/her hand or leg, and needs to be physically lifted and carried for performing daily chores. There is an acute scarcity of Care Centers, of trained nurses, trained helping personnel, as well as of a well trained good family caregiver. It is the urgent need of the day that:
– Alzheimer’s patients are officially recognized as BRAIN INVALIDS, so that they become entitled to all those facilities that invalids of other reasons get.
– An intensive survey should be conducted all over the country to correctly know the density of AD patients in every district.
– Districts with large densities should be given an Alzheimer’s Care-cum-training Center at their hospitals, fully equipped with diagnostic and treatment & caring facilities.
– AD Societies, on lines with AIDS and Cancer Societies, should be organized in each State.
– AD families should be encouraged by the government to organize their own support groups and to celebrate World Alzheimer’s Day, conduct, runs, parades and marches to spread awareness and to collect funds for the help of the poor patients by way of treatment, care and moral support.