“The Indian Caregiver’s Corner” :
This section is made in part, to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India.
Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….
About End of Life in developed and developing countries today.
Here are some thoughts one of our members based in Mumbai kindly agreed to share with us :
"I know this is a very sensitive issue but I feel it needs to be adressed - If I (I'm speaking of myself not for my mum) am diagnosed with dementia and do not want to subject my loved ones to the trauma of caregiving or subject myself to end my days in institutional care am I allowed to ask for assisted death. Who do I petition for this - I'd like to do it legally rather than commit suicide and leave behind a police case. I know one can make a living will for not having forced feeding or a ventilator. I don't mind petitioning the powers that be - I need to know how it is done. I also understand that it will take an enormous amount of time and effort for this kind of permission but if you look at the current scenario in India this is the most rational solution for me - the states gives me or my family no practical support - family and community support is sketchy and institutionalized care is frightfully expensive. Has anyone done this before ?"
Edited with permission of Ms Kalpana Malani, primary caregiver of her mother in Mumbai.
It has led to some reactions on our Facebook group and below is our reply,
Alzheimer’s Disease in India:
Dear members, thanks for sharing your very deep and sensitive thoughts indeed. Everyone has the right to think about his own end of life and feel worried/frightened especially when facing a relative/siblings/friends/neighbors deteriorating till losing totally his/her abilities. Indeed, it returns us to our own death, the impact that a painful end of life will have on our own self-esteem and the suffering we may undergo. Also, it makes us think about the look and the care our environment would be able to provide us...and on that point nothing is sure.
In France, euthanasia is not allowed yet but some people start asking for it. However, the situation is not the same in India. Indeed, in France "living will/advanced directives" is implemented and framed/enforced by the law : you can give your will in case someday you are terminally ill or let's say in a "close to death" critic situation; you may say in there that you don't want any agressive therapy and/or reanimation. Doctors would have then, to take care of you outside of any curative treatment. Of course, you still have the right to change your mind whenever you want. It does raise ethical issues and that's why it is always discussed collectively referred to the law and with a prior concern for the patient, his disease, his personality, life and family when there are some. The law is there to guide the care professionals on their practices, allowing you to pass away peacefully and accordind to your own health condition and not on someone else's decision.
But as I said, the situation is very different in India. As far as I can understand there's No advanced directives/living will, No social security system, No trained caregivers services, No home health care agencies, No subsidies for keeping your elderly parent at home, for Day Care Centers, for Old Age Homes and, the cost of hospitalization is so expensive that it's a real financial constraint for low and middle class households. You are lucky if eligible for some tax deductions.
The situation is not perfect or completely satisfying in developed countries either but it takes time to implement a comprehensive Public Health Policy especially starting on Old Age Care and End of Life Care. It may be quiet long in India but for now, personally, it seems to me sad to turn ourselves to this direction mainly for material or economic reasons...which can always be improved in developing countries. But will one have the patience to wait at least for his own case or build a system?
Hendi LINGIAH
Clinical Psychologist in Gerontology.
22/08/2011
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