Since my last article appeared, I have been receiving phone calls and queries on different issues related to the Alzheimer disease and my experience on this with my father. Starting from people’s sympathy to their eagerness to learn more about Alzheimer and possible ways to fight it – the response has been quite overwhelming. In today’s concluding part, I will try to capture some of the remaining issues that many have expressed their desire to know about. However, I must caution that it is not possible to discuss every aspect of this illness and my personal experience with my father in two newspaper articles where there is a constraint on page and space limit. Meeting such expectation requires more time and space than available. Please also keep in mind that I am writing at a time when my thought process still has not regained the composure required to do justice to such an exercise. However, anybody is welcome to contact me should there be need for further information or advice.
First and foremost thing to effectively fight this disease is to develop a sound understanding of this illness. As I mentioned in my last article, there are books available based on the research that is being continuously carried out in developed countries like the US. With internet, it is quite convenient to access such resource material and if possible source them from abroad as well. At the onset I, my mother, and our family friend had to undergo the basic learning on this illness which helped us much in the years to come as we knew what to expect and how to respond to each situation. The sphere of learning spreads from how to manage the stress resulting from the patience one must have to nurse such patients to how to help the patients continue the socialization as much as possible with the gradual decline of cerebral abilities.
The second area where we indeed have been fortunate is to have a doctor who is not only well qualified but also a generous human being. During the entire illness, my father was under the supervision of a doctor who was not only professionally well respected in the US but also one of the most caring physicians one can hope for. I will share one example, once my father’s doctor was traveling abroad to attend an international conference. He along with his wife visited my father at his own expense just to spend few days in our home to observe the condition of my father himself. During his stay, the American doctor met relatives and friends of our family to get a full appreciation of my father’s condition and was satisfied that my father seemed to be coping well and the decline was quite slow. With God’s kindness, the unparallel sincerity of a US Doctor, and the US imported medicine, my father could wage a much better battle against this disease than the many I have seen who unfortunately do not have access to such resources. Equally sad is that at times I could hardly find anyone qualified enough to give me any guidance when I needed it most. It always had to be my call to the US doctor and his counseling, patience, understanding, and courtesy that I could manage the situation much better than those who were not lucky enough to access such services.
Third important area is the morale support the patient needs. When people start getting old and gradually both the body and mind slowly gives away to the natural course of depreciation, it is difficult to accept the frailty no matter what the reality is. Given the self-made man my father was who literally brought up himself in absence of the mother whom he lost when he was six and the father he had little chance to interact due to my grandfather’s involvement in politics, my father found it difficult to accept the weakness that was slowly creeping in. It is very important that people around such patient never make them feel any less than what they always have been independent of the reality. We tried to keep his morale high by behaving as if nothing has changed and to us he is the same as before. One should never react, criticize, or lose patience – it is at times difficult but there is no other way.
One of the effective ways to keep the patient in good spirit is to continue as much as possible the regular social activities. As I told before, my father very enthusiastically used to go to the congregation prayers with me. However, as time went by, I noticed his sharp reactions whenever anyone would sit too close to him during the congregations. At times, he also used to react if there was too much crowding in our home. This is because a sense of insecurity can result from the inner realization but outer defiance of the reality by a person like my father who was a self made man used to being independent. It was sad to see this happening as my father was well known in his friend circle for his generous hospitality and our house had witnessed so many countless dinners and chats of friends and family. Even when my father used to visit his friends abroad, he would always throw a dinner where at times he cooked himself for the friends and their spouses although it was he who was supposed to be their guests.
Since travel was becoming increasingly difficult for him, we managed to have his friends from overseas visit him and his joy knew no bounds when he could entertain his friends at his home. Again, it is the responsibility of the family to find ways to ensure that the illness does not take away the social pleasures to which the person has been used to all through his life. Hence, we continued encouraging the weekly hangouts at our verandah and arranged the occasional dinners at our place to keep my father’s morale high and to make him feel secured within the crowd of friends who have been the best of friends a man can aspire for. I was also quite pleased to have managed a trip to the sea beach for my father and his friends from the school days who later moved overseas.
Regarding the pilgrimage, it was a risk that I took as such a person can easily get disoriented in a huge crowd where one is required to change places quite often and eat and dine whenever and wherever convenient. Hence, it is better to undertake such mission sooner than later. Under the watchful eyes of God and under the bright sky above, the father and son joined hands in seeking eternal peace from the One who brought us together in the first place. I am grateful to God that I could make my father perform the pilgrimage which he cherished much in the remaining days of his life.
Fourth important factor is to help such persons organize their life in a manner that has more elements of continuity, consistency, and familiarity as opposed to putting them into experience which may be completely new or unfamiliar to begin with. For example, the fact that my father could spend thirty five years of his life in the same house and in a serene neighborhood helped enormously as he had a clear perception of the geography and things around him which made things much easier. Any major relocation or displacement can cause difficulties for such patients as their ability to adapt to new surroundings and conditions weakens over time. To us, the home symbolized our life itself as being almost born and brought up in the greenery and tranquility second to none. Even now, I can see my father picking the early morning flowers from the small patch of lawn we had in front of the house and saving it for us to get up from the sleep to be greeted with his smile and joy which sparked even more brilliantly than the flowers. I pray the garden of heaven offers him the same generosity as did the mother nature.
Fifth is for the family to give time to the patient so that they can express themselves adequately at a time when the thought process needs activation most. In course of my countless talks and interactions with my father, I discovered many things which I never knew before. The reason is that a strong willed man of self-respect like my father usually prefer to keep their emotional weaknesses shielded within themselves. However, when the emotions start taking over ego, they reveal a side which I wish had surfaced long ago. For example, at the end I came to realize how much my father missed his mother who he lost at the age of six and he used to tell me, “Childhood is a difficult time for someone who does not have a mother.” I never realized before that in his heart he wanted to have a daughter so much in addition to the sons he had. Also I was amazed how much he respected my mother from the core of his heart inspite of being born in a male dominated generation where very few women worked and were mostly housewives. He even had me promise that I will look after my mother as if she were my daughter if someday he is no longer there for her. I hope I can live upto the promise.
Last and not the least is the willingness of the loved ones to sacrifice for the person in difficulty. In my case, faith in God’s infinite mercy and my religious values were of enormous strength to help me sail the journey with courage and conviction. Many of our parents are not perfect nor are we. End of the day, we are here today because they have been there for us then when we had none. That is the only reason parents are the only ones on whom God has given unlimited rights and privileges which are second to none. Similarly blessings of parents outlive their own lives and is like an overarching shade in our lives that protects us from many dangers and difficulties, known and unknown. My journey with my father was a swim in the confluence of the joy of the past and embracing the inevitable future, it was a celebration of life for what it achieved and a reflection on what more could have been done. Just as I was unleashed into the world from God’s kind hands into the mother’s womb residing in the cradle of love of both father and mother. In the same divine spirit, my father has been rested into God’s kind hands from the world of love and affection of his family and we pray that God grant His infinite mercy on the soul that was so loud on four fundamental principles of life – honesty, integrity, character and courage.
My father’s grave is on the bank of a lake and next to a place of worship. People lose their father but for me it has been almost like losing both a father and a son at one go. At evening when the stars twinkle in the blue sky with token of misty clouds drifting aimlessly and the gentle breeze kissing the skin as I stand next to his grave, I look upwards and wonder where is he now and what is he doing. As his body merges with the earth where has his spirit gone ? can he see us ? if he can, what is he thinking ? will we ever be together ? will that gentle smile that started my morning hours ever shine on me again ? will the chats over a cup of tea fill the evening hours with joy again ? where do I go from here ? all the rambling thoughts cloud the horizon and on a sudden I feel like the sailor of a ship without the compass, soldier in a battle without the armor, and a traveler in a journey who wakes up in the morning to find his fellow companion has gone in silence while he was asleep. From hence onwards we both embark into journeys into unchartered territories that bonds us only in spirit with the hope that someday God will be kind enough to unite us again in the same journey that my father undertook ahead of me. May God rest his soul in peace and give us the strength to carry on until we meet again.