Urmila Story | CARE Registry for Asian Americans and Pacific Islanders - Health Across the Lifespan

Urmila Story

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A wife's aspiration emerged victorious: Memories as caregiver of her husband

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Hindi Title: "Ek patni ki aakanshayon ki jeet: Yaaden Apne pati ke dekh bhaal karte hue"

My name is Urmila and I am from India. My husband is also from India, we are from UP (Uttar Pradesh). In 1966, he came to USA. After three to four months, I also came with my younger son. After coming here, he had a small accident of his hand. That was a setback for him, but he was a very strong person. He pursued further studies here, like masters and MBA at that time.

Many years later around 76-77 years of age, he started developing symptoms of Alzheimer’s disease. We could not detect earlier, but children and his friends started telling me that he is losing his memory. I also started noticing…He was a very strong personality. He started getting very angry at small things. Very small issues made him angry. Then, I also realized that he is losing his memory. I showed him to doctors and they also said that he is losing memory. Medicines were started, but they said that he will not recover, but the progression of the disease will be slow.

Life went on and then he started pestering me that he wanted to go to India. This was seven years before his death that he wanted to go to India. When we reached India, he asked me, “Where am I?” I told him that we are in India, but he said, “I don’t want to be here… This is not India...I want to go back today itself.” We booked our return tickets. We had gone to India on 1st Nov and returned on 13th Nov. Two weeks after we returned to USA, he again started saying that he wanted to go to India. When I told him that we had gone to India two weeks back he said, “You might have gone, I never went!” I told him that both of us had gone. After that he forgot that he wanted to go again.

Life went on…slowly…with his mistakes…not remembering stuff, blaming me for stuff that he did not remember. Every day was little more and more hard for me. It was OK…I took care of him and life went on…

About two years before his death, one day after dinner, he was sitting on a chair. When I asked him to come upstairs to sleep, the whole night he kept trying to get up from the chair “OK, I have to go upstairs? OK…let’s go…” and could not get up! The whole night, he was trying to get up and I kept telling him to get up, but he could not get up from chair...The whole night went like this…Next day morning when the kids came, they made him lie down on the sofa. I made breakfast, then lunch and he had his food and the day went by. That night, I thought that he will not be able to go upstairs, so I prepared our bed downstairs as he could not go upstairs. Around 10 o’clock, I asked him to come to sleep. And he was ready to go upstairs and quickly climbed up the stairs! So our regular routine of going upstairs at night started again. Every night we would go upstairs to sleep and come down the next morning for tea. Then he would go upstairs for shower and getting ready. If we had to go anywhere, I would make him ready and then get ready myself and then we both would go.

Slowly his memory deteriorated…and he would start counting…one, two, three, four…and continue this for few days. Then he would keep singing…anything…anything…which did not make sense at all. After a

few days, he started shouting…he used to scream…he used to scream…When I asked him to keep quiet and not make noises, he would be quiet for a minute and then again start screaming.

Maybe around 2 years back, I got help for making him shower. Other things I took care of…life went on…became more and more hard. He would stand in front of the mirror and talk as if there was another person standing in front of him. He did not think it was him…He thought that it was some other person and would talk for hours regarding his business, explaining that he would have to work hard. “We would give you good pay but you would have to work hard.” It was some business talk for one –two hours…

About three years before his death, he did not know when to go to toilet. I was taking care of everything. His urination and passing stools too. I started putting on diaper on him three to four years back. So many times, he had accidents…when I wanted him to use the restroom he would not go and then defecate in the diaper. It was harder for me…But I was determined not to send him to nursing home. Kids were very supportive and said that their dad needed nursing home care, but I did not want to send him…So I kept taking care of him. So it became harder and harder for me…

Around eight months before his death, I had living help which was a great help for me…Before that one or two times, it had become difficult for me to take him outside to religious ceremonies like havan and to my friend’s place. So the person who showered him would look after him. Life kept going on…It was hard but I tried my best to take care of him. I was very happy that I did this. I did not want to send him to the nursing home. I was very emotional not to send him to nursing home. I was not comfortable sending him to nursing home. I am very happy I took care of him…it was very hard but I am very proud of myself that I took care of him. I tried my best whatever I could do…