Notes of a AD Caregiver on Alzheimer’s disease (a merciless enemy)

In developing countries, with old civilizations, dementia is taken as an avoidable stage of the health of old people. In India they say “so and so is now sixteed  – sathiya gaye hain”. People take this so lightly, very few go to a specialist for checkup and advice. The medical profession too has been non-serious about the disease because no agency, ranging from the government to the drug agencies, has taken any initiative to spread awareness of the deadly realities of Alzheimer’s Disease (AD) and medicos have no time for this, social workers do not want to understand the implications, politicians pass on the proposals of rehabilitation to the bureaucracy, which, uncommitted as it is to anything for the masses, just files the papers and forgets about it. Perhaps when some big bureaucrat gets into AD net, the file may then be taken out from oblivion.

AD victim first shows some forgetfulness and does not bother. So often family members do not observe the changes because they are so very gradual to be noticed, the victim himself does not feel the difference. Others in the family are busy with their own owes. When the disease manifests noticeably, it has already done irreversible damage to the brain of the victim by killing considerable number of neuron cells from different areas of the brain. The memory starts vanishing with the system of LIFO, i.e., what was remembered last vanishes first (Last In First Out).( This ‘reverse’ gear takes the person, mentally, back towards youth, then childhood, then infant stage when only mother, feeds and survival techniques if infants are remembered and one behaves like an infant).

This is the last phase of the first stage of AD. There is noticeable change in behaviour, mood and decision making. Only then the family thinks of consulting a doctor. Relatives and acquaintances give advices, ranging from soothing the bad stars to appeasing the ‘bhut prets‘( ghosts) and curses casted by jealous  ones from the wider circle of relatives. Families visit astrologers, sorcerers and every one claiming to have supernatural powers to heal, to reveal real (?) causes and to appease the powers that be. Precious time is lost and the second stage starts to set in.

This total lack of the awareness of AD also is mistaken by the uninformed family members and the society at large, to be a lunatic attack (where behaviour is violent and with tendency of retaliation). On the contrary, an AD victim fails to understand and express, is frustrated, is confused and behaves like a person lost in dense woods laden with heavy morning fog, trying to find right direction with no success. This frustration is the worst thing that can happen to an active, vibrant, creative and socially respected person. The disease torments the victim. This, happening in old age when one deserves to bask in the warmth of the love of family and recognition of society, destroys the will to live, and, also the respect one deserves along with the self esteem one had earned through the life lived. Depending totally on someone else for everything at every moment of the day and the night is not at all a pleasure, all the humor is sapped off from the life left. Entertainment, music, laughter, jokes, all recreating factors become meaningless for the victim of AD. Life becomes drab, tasteless and robbed of a smile. The affected person cannot say what is happening when suffers from colds, cough, fever, stomach upset, headache, tooth ache, sprains, cuts, body pain, weakening eye sight, hearing loss and other sicknesses. All these ailments have to be noticed and got treated by the caregivers. Thus the caregiver has to be a very devoted and keen observer of the changes in day to day health of the AD victim.
To aggravate the tragedy, during last one hundred and odd years of the discovery of the AD, there is no effective medicine found so far. The few ones prescribed, only slow down the progress of the disease. Theses being imported, are costly and beyond the reach of a vast majority of sufferers. There is no medicine that could help growth of new neuron cells to replace the dead ones

Here the plight of AD victims can be categorized as: 1. Those who are taken good care of by any one of the family members, or those who are provided with proper care at AD Centers, 2. Those who are left in care of maids etc during day time when family members are away on their jobs, studies etc. and receive some sort of treatment, 3.Those who due to lack of resource and understanding are just tolerated and kept in confinement away from the sight of any one other then the family. These unfortunate ones also go without any treatment and affection, 4. These are the ones whom the family members themselves consider to be dangerous, the disease to be hereditary and a shame. They have a fear of social bycot, particularly in relation to marital relationships of children. Some chose to leave them in trains going far away, at bus stations, religious places etc., at the mercy of the society.  Sometimes it is also heard that, the father or mother of so and so has run away from home never to be found again. AD, in late first stage and early second stage, does impel the victim to run away to destination nowhere, to tear clothes and to inflict other such self punishments. They also resist any restraint.

The only effective treatment is to provide compassion, love and comfort to the victim of AD. It is possible only when the caregiver has the quality of merging him/her own self with the self of the sufferer. In other words, the caregiver has to be himself and at the same time the self of the AD sufferer. The former quality is important to be a good caregiver, and the latter, the caregiver is in good health and required mental disposition so that the sufferer develops full confidence in the caregiver and is able to survive with dignity as long as destiny has desired.

In those Western countries where AD care is legally a social responsibility, the word CAREGIVER denotes treating specialists and supporting medical staff. In other countries the sufferers are exclusively family responsibility, the person who is most attached to the sufferer, is given the role of a caregiver. Such persons start from a ZERO or even a below zero level of skill required to look after a person whose concepts and reactions are now skewed by the massive destruction of many parts of the brain. Therefore, they take time to play the full role of a trained nurse. Strong will, devotion, desire to learn, patience to remain cool, ever ready to help any time of the day and the night, ability to correctly guess any other disease setting in, to report in details about the status of health and behaviour of the patient to the attending medical expert, to be careful while talking to the visitors about the AD sufferer, as such persons are very sensitive to their self esteem and do not like to be shown any pity by any one. They show annoyance and resistance even to the caregiver for some time, till they forget what had happened. Perhaps this forgetfulness is misused by the family members of many sufferers that they take liberty with them in behaving and caring. Many well wishers ask the a series of questions and this annoys the AD victims.

The AD is not life threatening, sufferers take food in their normal quantities, digestion is as it always has been, but metabolism is affected. The drugs given to slow down the progressiveness of AD and the psycho drugs given to calm down and to control behaviour, appear to have side effects on assimilation of nutrients. Therefore a diet rich in proteins, vitamins, minerals, essential fatty acids and micro nutrients, is very important. Proper rest, body posture, massage, exercise (as much as comfortable level permits) sleep and hygiene are the things that need regularity and careful indulgence of the garegiver and assistance given to him/her by family members.

The secret of success is the ability to be the self of the sufferer of Alzheimer’s Disease and at the same time be himself too.

For one or two generations, the families of AD sufferers should not expect and help worth the name from the governments and the society, in terms of emotional, medical, monetary and moral support. This is the characteristics of the societies of the old world where a person gets help at funeral and recognition at post death functions. So it is the solo show of the family and close relatives.