A family's story of dealing with Alzheimer's | Milaap

A family's story of dealing with Alzheimer's

Now 68, Suresh clearly remembers how much excitement his father brought into his childhood. “Daddy, as we all called him, gave us so much, even though his means were limited. There was rarely a Sunday or a holiday that we did not go out for a picnic or outing,” he recalls. 

His father was the one who was always on his side. “Daddy was always there as my friend, philosopher and guide. His faith in me was solid as a rock. He supported me when I was in my most fragile state of mind. When I became a father, he never left my side and gave me advice that helped me make good decisions,” he says. 

Suresh was always thankful to his father's warm, wise presence. But in 2001, at 76, his father developed certain odd traits. He began losing touch with his surroundings. He wasn't able to understand what his family was saying to him. He began having hallucinations, so the family needed to sit by his bedside till he calmed down.

This taciturn, confused person was very different from how Suresh remembered his father. When taken to the hospital, he was diagnosed with Alzheimer's Disease. It was the first time they had come in such close contact with the condition. 

Suresh's father and mother

“It was very difficult to care for my father because he had become picky about his hygiene and eating - sometimes biting the feeder's hands if forced. I read many books to learn more about Alzheimer's. When I finally understood what it was and how it was affecting my father, that was when I valued his love and wisdom of the past the most.” relates Suresh.  

The caregiver's dilemma

While the treatment did him some good, there was no reversing the progressing condition. Suresh's father slowly began needing constant care, particularly in the last three years. The caregiving was very hard on Suresh as he saw his father lose his memories and all that made up his personality. There were moments of clarity and normalcy, which became rarer as time went by. 

“We knew he would never be the same again, but we tried our best to keep his dignity and quality of life intact. Towards the end, his personality was gone and we had no idea how long this agony would last. We kept hoping till the end that a cure could be found,” says Suresh speaking of those desperate times. 

Eleven years after the diagnosis, Suresh's father TD Karla passed away at the age of 86 due to a lung infection. 

The right support made all the difference

Having lost her own mother to Alzheimer's, Dr Sushma Chawla began Asha, Ek Hope, an NGO and support group to help caregivers like Suresh. Members from organisation including Dr Sushma herself give medical advice and mental support and counselling so caretakers can deal with their own stress as they watch the minds of their loved ones disintegrate.

Dr Sushma taking a session

If detected in the early stages, a patient with Alzheimer's can enjoy upto 15 years of near-normal life. Suresh is now an active volunteer with Hope Ek Asha working to spread awareness of early detection. It is one way he feels he can honour his father's memory – by helping those who are going through what he went through.
“Dr Sushma really helped us deal with what was happening. They helped us find the right help and emotionally held our hands at the time. I am an active volunteer for the organisation and go and provide the same support to others,” Suresh says. 

Hope Ek Asha is now looking to start a day-care centre where the patients can be given proper care during the day. It is also a move towards providing stimulation through socialising for the patients. Donate to help Hope Ek Asha continue the good work and start a day-care centre. Every contribution you make will be matched by Portea Medical, doubling the value of your donation. 

Hope Ek Asha is a registered not-for-profit organisation and all contributions are tax exempted.