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Submitted by PatientsEngage on 11 September 2015

Balbir Singh Rawat, now 87, looked after his wife who had Alzheimer’s Disease. He talks of the challenges, learnings and what we, as a society, need to do to tackle this scourge of the elderly.

My wife’s troubles started sometime in 2005 when she was hardly 70 yrs old, the prime age of a grandma. The disease crept in so slowly that none noticed the subtle changes in her behaviour by way of reactions to external stimuli. 

When we did notice, it was too late to avail of any chance of recovery. Slowly but steadily the disease began to take over the commands of her brain, destroying some controls and distorting the others. Her memory slid into reverse gear. Her reactions became weird, her decisions harmful to herself. She needed all-time watch and care. In the last phase, after 6 1/2 years of all-round caregiving by me, she peacefully passed away, literally in my lap, I holding her upright and my eldest daughter, who had come to see her, feeding her dinner of vitamin-mineral-enriched light meal, at 9.15 P.M. on 1st July 2012, just 4 1/2 month after the platinum jubilee of our wedding.

The purpose of this article is not to narrate what she underwent, but to develop mass awareness about this most nasty and the least understood disease, distilled from all that my wife, I, and our family passed through. 

Therefore, I will start from the beginning, in chronological order.

1.The victim as an individual: This may be important because all old people do not get dementia and all dementia patients do not get Alzheimer's Disease (AD). What is there in the body biochemistry of the individuals who are struck by AD is not yet fully understood despite the discovery of this disease some 110 yrs ago. My wife had good general health and with this she had a long history of migraine, taking prescribed pain soothers for more than three decades. Later she developed cervical spondylosis and lived with it for more than fifteen years. Were these conditions the precursors of AD?

By temperament she was more of an introvert, very gentle, quick-witted and with a remarkable 'sixth sense'. A good mother, good housewife and positive, forward-looking companion. Did these attributes help her to be less aggressive as an AD sufferer? No such study on these aspects of the background influencing the pre-AD life of the patient has come to my notice.  I do feel they have a strong bearing. 

2. Initial symptoms and the family:  Being totally disinformed about dementia and knowing nothing about Alzheimer's, the family members are the first ones to jump to conclusions and take things in a jovial manner, declaring the occasional memory slips as the 60th-year syndrome (sathiya gaye) and children coming to help with a teasing smile, busy elders showing annoyance, are the harbingers of the days to come in the life of the patient. For fear of the social taboo of the neighbours declaring that so and so has become insane (pagal), the "news" is kept a secret and going to a doctor is not thought of. The disease creeps in very slowly but steadily. When cognitive changes become very apparent, then any chance of considerably slowing the progress of the disease is lost.

3. The cognitive symptoms: Described as behavioural changes, it shows as disrupted decision making due to jumbling up of signals received by the brain and distorted analysis of these signals. It may manifest as trying to eat with the wrong end of a spoon, or wearing the left shoe on the right leg, or putting spectacles in the fridge in place of the almirah. Or, even trying to talk to the figures on the TV. Relationships are reset, nephew may become brother, sister may look like a teacher. 

Actually as the first stage sets in, the memory has adopted the FIFO (first in, first out) system of storage. What happened just few minutes ago is not in the memory at all. Older memories can still be recalled but the erasing has slipped into "reverse gear" and the whole brain function going into the past, step by step. A 70-year-old may take 5 years, (then in the third stage) to think s/he is 17 years old and surprise every one, saying "I am going to get married soon".

At last, when the person is already in the irreversible grip of the first stage of the disease, a trusted doctor is contacted. He recommends a neurologist and this specialist recommends lots of medicines, mostly psycho drugs to calm down the erratic behaviour and recommends certain tests. 

4. The diagnosis: The expert doctor will recommend brain scan, ultrasound profiling and so many other tests. The family is told that the brain of the person is shrinking. Whatever it means. The patient is asked so many well-defined questions to test the reaction of the brain. Based upon the promptness, correctness and relevance of the answers, the specialist declares whether it is Alzheimer's or not. In case of Alzheimer's, the family is given some textbook advice on how to look after the patient and what to expect. 

There being no hospitalisation facility for AD patients in the country, the whole onus lies with the family and their specialist doctor who himself/herself has never been with an AD sufferer for even 8 hours of a shift. All their knowledge and experience is developed from the inputs given, first by the text books they studied as students, secondly by the literature supplied by the concerned drug companies and thirdly by the caregivers and the answers of the patients. 

There are not more than half a dozen formulations of medicines for the disease, so the patient gets that one the doctor finds fit to prescribe. Medication is a sort of experimentation in the combinations prescribed. If one combination is found bad, it is changed into another. Treatment is quite costly, about Rs.2,000/- to 2,200 per month and visits to the doctors, lab charges and travelling costs in addition. 

Of late Dr. Mary Newport, M.D. of USA found that her newly AD diagnosed husband showed remarkable recovery by taking in coconut oil with his meals. The oil has more than 60% medium chain triglycerides (MCTs), so it helps reduce the destruction (and regeneration) of brain neurons by the disease. My experience is that a recovery depends upon how early one started taking the oil. Dr. Newport, being a child specialist, must have been well versed with the importance of MCT oil to overall development of premature babies. I tried it by giving it to my wife and found it helpful, calming her a little and in slightly delaying the slide. But I came to know of it when my wife was well into the middle period of her second phase, when lots of damage was already done, the improvement was of little use to her.

5. The phases of the Alzheimer's: The disease sneaks in slowly at the beginning. Taking longer than normal time to recall something, trying to hide errors, unable to concentrate on the matter at hand, reacting late to routine stimuli, forgetting to name something and saying "that", 'this " starts with a regularity. By the time the busy family members, however caring they may be, realise that something is really serious enough, other things have started: self-hurts and damages, such as cuts by knives; getting scalded or things being set alight by mistake; misplacing of articles of daily use not to found so easily; losing sense of time; unable to recall relationships and so on… By this stage, slowing the progress of the disease by treatment and prolonging the period of the mild first phase, when the afflicted person is still able to look after self, is no more possible. Before the patient finds it difficult to read and write, all legal obligations should be taken care of as per his/her desire in presence of all the adults of the family, especially the spouse. The first phase may last from 2 to 3 years.

Transition from first to second phase is again so slow that it is usually realised when the afflicted person starts tearing clothes, has difficulty in finding the loo, is in the bathroom and not taking a bath, shows an unusual urge to go out (in fact to escape from the confusion and in search of something they want but unable to ask for) and so on. It has happened to many people that they never found their ailing parent/dear one who had sneaked out. If traced by police or any Samaritan, the person is robbed of all that is worth of use, stripped down to their underwear. Many are found after they lose their life due to various kinds of accidents. 

During this phase, the limbs do work, walking is normal but gait is affected, so one companion he or she likes is a must. Long travel by car or bus is feared, shouting to get out is frequent, socialising is not enjoyed. Do not ask such patients interrogative questions like "how are you”, “what is this”, “can you read this letter”, “tell me what comes after number 4” etc as they find it extremely annoying. Diapers are now necessary, especially during the night.  

Regular walks, brushing teeth, combing hair, taking food and water, changing clothes and bathing, too, now need help.  A wheel chair is desirable, especially designed diets are now important. The patient has to be taken care of as if s/he is a new born baby. So those who have the inclination to be a caregiver to a new born, like a mother only succeed. Only a few patients are lucky to have such caregivers. 

Entry into the third and the final phase may take 4-5 to 6-7 years since onset of the disease. Now the total charge of the person steadily shifts to the caregiver. Medicines are to help only in getting sleep and remaining as calm as possible. This is the most trying challenge to the caregiver and the family as a whole. Doctor only say " give as good care as you can". The afflicted person's organs are slowly becoming limp, senses are dulled fully, sense differentiating between day and night is fading, waking up in the night time and roaming around rooms and trying to do some "job" makes a day of ‘36 hours’ for the caregiver. The patient loses the sense of smell and wetness of bedwetting and passing stools. Pain of bedsores is not realised. Body immunity is at its lowest, this or that type of seasonal ailment may be an essential part. It’s a battle for survival to only breathe gracefully and be 100% dependent on the care of the caregivers. Very few are lucky to get a full-time maid, who can help as a trained and devoted nurse. Few can afford to have one. Mostly it is a solo walk for the caregiver even in a family full of three generations under one roof (one busy at jobs, the other at studies). Spouse is the best caregiver if s/he has the inclination. Daughters-in-law, too, are not found lacking. Daughters are regular visitor helpers, sons provide financial support. 

The end comes unannounced, if nobody is around when the last breath is exhaled, it is the greatest tragedy of the life of the departed soul. (Believe me such cases are not rare.)

The incidence of this disease is the third highest in India. It is estimated to be nearly 42 persons per 1,000 of the elderly in the age group 60+.           

6. A request:

a. Declaring all dementia patients as mentally invalid persons and granting them status of physical invalids so that they too can enjoy all the statutory facilities entitled.

b. Starting courses in dementia care for nurses and physicians in their medical studies, and short duration courses for caregivers and health workers of Primary Health Centres.

c. Opening Alzheimer's indoor patients wards in every district hospital of the country,and 

d. encouraging volunteer organisations, youth groups, NCC and Sociology students to be associated with developing awareness, caregiving and fund raising to help poor patients of Alzheimer's disease in their localities in cities and rural areas.

Society owes these elderly persons, who gave their youth to build up this society, as much as they can. 

 

The views expressed are personal

                                                                               

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