The zone of forgetfulness
Though I have been writing on the Alzheimer’s Disorder (AD) ever since my father was struck by this disorder and died in 1996, after battling with it for eight long years. Perhaps, I want to offload my guilt, not being there for him for a considerable stretch when he needed me the utmost. And with that in the background, or foreground, I’m trying my utmost to try spread awareness about this disorder, by writing about it. And as the World Alzheimer’s Day approaches – 21 September – I am once again focusing on this disorder. And this year two positives do stand out.
But before that, let me focus on those basics to AD. To quote a medical text, ‘In realistic terms this disorder can be explained by loss of memory cells. AD is a progressive, degenerative disorder/disease that attacks the brain and results in impaired memory, thinking and behaviour. Symptoms of AD include a gradual loss of memory, decline in the ability to perform routine tasks, disorientation with regard to time and space, impairment of judgement, personality change, difficulty in learning and loss of language and communication skills. As with all dementias, the rate of progression in Alzheimer’s patients varies from case to case. This incurable, degenerative and terminal disease is generally diagnosed in people over 65 years of age. An estimated 26.6 million people worldwide were afflicted with Alzheimer’s in 2006. This number may quadruple by 2050. However, there is no evidence that women are at an increased risk than men. The earliest observable symptoms are often mistaken to be age-related concerns or manifestations of stress. Alzheimer’s develops for an indeterminate period of time before becoming fully apparent, and it can progress undiagnosed for years. And because it is degenerative, the management of patients is of utmost importance and the role of the caregiver becomes extremely crucial.’
Now, coming to the two positives, which have emerged only recently. Though there is hardly any cure to harness dying memory cells Pravat Mandal of the National Brain Research Centre does claim to detect the onset of this disorder by special MRIs. He concedes that there’s little permanent cure for dying, or shrinking memory cells but, yes, the process maybe slowed down – that is decay cum shrinkage of the dying memory cells may be slowed down. To quote him , ‘Alzheimer’s disorder starts much earlier than the actual symptoms are seen is a person. This actual process can be seen through brain imaging (MRI and MRS). The MRI/MRS method is fool proof and no radiation and no surgery, and no blood work is required.’
The other positive that I’m seeing and sensing is that more and more of us are talking about this disorder, and with that, becoming better caregivers. In fact, the very support of the immediate family is of crucial significance. And, with this the role of the care-giver is of utmost importance. So much so that there are many who quip this basic one liner – the actual victim of AD is not the patient but the caregiver, because the patient isn’t really aware of what’s been happening and is solely dependant on the caregiver.
There could be several such dedicated care givers. Recently, I came across academic Asha Puri who looked after her Alzheimer’s struck mother. She told me, ‘My mother’s name was Raj, Raj Puri, nee Charnalia. She had a very strong personality and an abiding faith that she retained till the end. Though she lost her parents when she was very young, at fourteen when her uncle suggested she get married she decided that she wanted to study and become a doctor. She said the money for her wedding should be used for her studies. She studied at Amritsar Medical College and came second in United Punjab. She lived intensely, was very active and took life as it came. She was very open, very rational and very caring. Her approach to life was positive, she never let things get her down and was very practical. Even after she learnt she had Alzheimer’s she initially used repetitiveness to teach English …’ Asha also adds that she and her sister had to ‘reinvent our lives’ , to be there as caretakers for their mother – ‘ I had to leave my job at the University. My sister and I had to reinvent our lives, create an extended family of nurses, helpers, medical support and so on, and learn not only about Alzheimer’s but how to deal with the other associated problems. Then there was the medication. Allopathic medicine did not hold out much hope and we looked at alternative systems, Ayurveda in particular.
Here too, finding the genuine doctor required research. You have got to change your lifestyle and thinking. Stand back and review your life. Then look for practical solutions. If you can, get as much help as you can, treat help like family and if there are children around, create as much intergenerational contact as possible.
The most important thing is to create a routine taking into account the requirements the loss of faculties engenders. Second, get as much information as possible. Three, join support groups and talk. Don’t try to obfuscate and wish things away. Accept them, and look for solutions. With a little thought, there is always something that can be done.’
Humra Quraishi is a columnist and author