Blog By Aruna Joshi

Living in the shadow of Alzheimer’s

At 1:30 in the night there is repeated knocking on my bed room door. Startled, I wake up from my deep sleep, and open the door. What I see? My mother-in-law standing right there, smile on her face, saying, “C’mon let’s have dinner”. I stand there confused and frozen trying to make sense of what I just hear. I wake up my husband and we together try to explain her that it is past midnight and all of us already had dinner together at 9pm. But all our efforts go in vain as she is not convinced. Then at 2.30 in the night I make chapatti for her and serve her with the some veggies left over from the dinner. Well, the issue doesn’t resolve at this. She insists that all of us have dinner with her. So we act as if we are having food and then the whole episode ends; with her cuddling into her comforter like a baby, wishing us ‘Good Night’ and telling us to sleep peacefully. My husband and I lie on our bed wide awake, staring at the ceiling fan for the rest of the night, nervous, perplexed and worried. This was the first of the many incidences that sent chills down our spines.
It all started with her slowly forgetting simple things like her glasses or her hearing aid or forgetting names or days. It didn’t seem that critical in the beginning but as the frequency increased, it was a matter of worry. Sometimes she would talk about things that didn’t make logical sense. I remember once we went to a restaurant for dinner. When we were half way through, she suddenly panicked as she had forgotten to carry her dentures. As we were about to make a U-turn to go back home and fetch them, my Father-in-law, who had carried it knowing that she would forget; quietly removed it from his pocket and placed the dentures on her hand. She was very happy and praised him to the skies. Then she said to him, who had lost his teeth as well, “Actually you should also use it. Why don’t you try it today?” and we all burst into laughter thinking that it is joke, where as she was damn serious about it.
Slowly she started forgetting people around her. If any of the relatives visited us after a long time, and asked her, “Did you recognize me?” Her standard response would be, “How can I forget you? I am seeing you after so long. How are you and how is everyone at home?” The visitor would be happy with her loving and caring response and she would be happy to have saved herself from embarrassment. Later, after they left, a flood of questions would come our way. “Who was he? Where does he live? Why was he here?” and so on.
Our doctor told us that she was suffering from Dementia which was age related. Gradually it started getting worse when she started forgetting us, family members. She would often question pointing a finger at my father-in-law, “Who is this stranger in my room? Ask him to leave.” It used to be highly disheartening to hear this every time. They had completed 55 years of togetherness by that time. I could see the pain in my Father-in-law’s eyes. We realized that this would happen more especially if he wore Jeans and T-shirt. In such a situation he would go to the other room, change his clothes to pyjama-kurta(as she was used to seeing him that way), go out of the house and ring the bell and come in with a fake smile and tell her, “I had gone out and just came in.” And she would believe him. This became a repetitive phenomenon. It had started to take a toll on my father-in-law’s health. Over time, he had become over caring and protective about her and would do anything in his capacity to make her happy. He would say, “She has forgotten me. But I have not”.
While she was being treated for Dementia, her Neurologist broke the news about the onset of Alzheimer’s, which he informed us is a progressive disease that destroys memory and other important mental functions. Alzheimer’s is a type of dementia that causes problems with memory, thinking and behaviour. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. The doctor was treating her only to delay the progress of the disease; Alzheimer’s does not have any cure per say. An Alzheimer’s patient becomes dependent totally on the people around for every small thing. In such cases, the caregiver has a hugely challenging task to handle someone who is losing the memory, cognitive abilities and continence.
Her behaviour and conversations were incomprehensible to our rational mind, but this was the given situation in our life which we needed to handle with care. As the disease progressed, her memory often drifted into the childhood phase of her life and could distinctly remember things from that time with remarkable details; but forget whether it is day or night, whether she had food, names, date, etc.
The part of the brain responsible for logic and reasoning gradually switched of. The surprising part was that she stopped feeling the tremendous knee pain that she had previously. As fate would have it, she suffered a paralytic stroke one year back, which confined her to bed. She was battling a lethal combination of severe Alzheimer’s and a stroke. After this, she lost almost 90% of her memory. She did not even realize the passing away of her husband without whom she could never imagine her life. Towards the end, she also lost her vocabulary. The only thing she would understand was the language of love and touch.
She passed away on 27th May, releasing herself of the utmost trauma she was going through within the confines of her body. The idea of blog came to me when my neighbour who had seen her for the past few years said, “I would like to know more about aunty. We only saw this stage of her life and know her based on this.”
We usually know a person and form opinion based on whatever time we have known them. She had completely lost her identity after being taken over by the disease. Behind this frail, helpless woman was an entirely different person. My mother-in-law was hugely creative, very loving and caring. She would use her creativity to decorate her house, adorn herself, in stitching and embroidery, gardening and many more things. A sports-woman in her young age, she was very active until a decade back. A fabulous cook that she was, she loved to feed people. A very independent person, she would single-handedly manage the house, children and their studies, as her husband would frequently travel for his office work. Overall she lived a very dignified and fulfilling life until the onset of Alzheimer’s. I used to often wonder how could this happen to such a strong and independent woman. It is scary that Alzheimer’s can strike anyone anytime, for the reasons lesser know. It is said that it could be due to aging, family history or carrying certain genes.( For more information on Alzheimer’s: https://www.medicalnewstoday.com/articles/159442.php) However, all of this left me with some nagging question. “Who are we really?”, “What is our identity?” and “Does our identity change with time?” There are no definite answers to these questions. Or maybe I will find them on my life’s journey sometime. But this experience has taught me some really valuable life lessons. It has left me more humble than before, I learnt the real meaning of unconditional love and developed a lot of patience.