How Alzheimer’s Changed Our Lives -Ms.Nishi Pulugurtha
Our lives changed one day in November eight years ago.
That day was like any other normal day. I left for work as usual. Amma was at home. On reaching work I called her up as I normally did. The phone went unanswered. Amma must have gone out, as she did quite regularly, to the local shop, to get groceries, to get vegetables or just to buy another newspaper, or she would be out tending to her plants. She had a mobile too but in spite of my coaxing her to keep it with her, she rarely did so. I called up again after a couple of hours, no answer. I reached out to my neighbour and asked her to look up. She called me back to say that all the windows were shut and that the apartment was locked from the outside.
We had no news of her for 48 hours. We tried all we could do in those 48 hours to find where she could have gone. As I sat at the police headquarters, I got a call from a gentleman who said he found my number on a visiting card that a lady had in her purse. He said that she had been sitting since midnight at the petrol pump and refused to communicate. He took her purse and made the call. I asked him to put her on line. When she did, I just called out to her and she recognized me and spoke as if nothing had happened. We brought her home safe and sound.
A series of doctor visits and diagnostic tests followed. We could now no longer leave her alone at home. A help was required at all time. After this episode, I found her looking for ways and means to leave the house. I had to make sure the house was always locked and that Amma could never be left alone.
The diagnosis came in, Amma had Alzheimer’s Disease.
There was no cure for it but she needed medicines which just slowed down the degeneration of the brain.
What we were unprepared for were the behavioural changes that Alzheimer’s brings about.
Amma started having hallucinations, she said that a famous actor was sitting on the neem tree behind our window, that a god was standing outside the window, that her grandson was waiting for her outside. They troubled me a lot. I did not know how to react to them. Initially, I tried to reason with her, but then I soon realised there was no point doing it. I tried to listen to her patiently. She did not like having the caregiver at home. At times she complained to me about how the girl kept our house keys with her. I tried to make sure Amma did things she liked to do and did. However, she had someone to constantly supervise her. At night I slept with the keys of the house in my pillow case to make sure she did not find them.
Amma and I went out for movies, for lunches, shopping, we even travelled to my sister in Roorkee, to her sisters in Hyderabad. Amma loved doing all of these. I just had to make sure she was safe and always kept a hand on her shoulder, lest she would wander off. It was difficult but then I had to make sure she still did things she enjoyed doing. Things were different now when she did these things she loved. She looked for a door that would take her out.
She was also slowly showing a disinterest in things she earlier on loved to do. My aunts noticed it about a year into the disease. At Hyderabad, she preferred to keep to herself, she spoke less. This was not how she used to be, she was vivacious, was the cynosure at all family gatherings, had a great sense of humour and kept gatherings lively and fun.
As she advanced into the disease Amma slowly lost sense of time and place. Her memory started playing up. Her cognitive skills deteriorated slowly. It has been a little over three years now since Amma has stopped talking. She just looks at us when we talk and smiles. These days the smiles have almost disappeared, she peers and looks as if she does not recognize me too. At time she responds by making a noise. She looks at the television and smiles, then looks away. It has been almost three years that she has stopped walking, she cannot stand up by herself and needs help for everything. Her food preferences have changed completely, she loves sweets, pastries and chocolates. I have learnt to observe and understand what she might be feeling. When she falls sick it becomes difficult to treat her as she says nothing.
We look at symptoms and try to tackle them.
There is no single way of dealing with a loved one who has Alzheimer’s and dementia. There is no way one can be prepared for it. I take each day as it comes. Each day throws up a new challenge and it has been a learning process ever since. I have been writing about my experiences as it is very important to create an awareness about Alzheimer’s and dementia and I hope that my experiences will help someone somewhere.
Amma is now like a child who needs to be cared for. Our roles have reversed. Amma had been an extremely independent woman who managed home, children and career perfectly. She now needs help to do everything. She had always been a voracious reader, a habit that remained with after even after her diagnosis. However, years into the disease, I noticed a change, she just kept looking at the pictures in magazines, smiled at them and then lost interest in them. These days she does not even look at the pictures anymore. The smile that greeted me once I got back home from work is faded these days. Life has changed a lot for us. When I talk to Amma she listens at times, at times looks away. I keep talking, I am sure my voice reaches out to her. I am told that inspite of all her memory going away, she surely will be in a position to understand a loved one’s voice and the fact that she is loved and cared for by her dear ones.
Name: Nishi Pulugurtha