"Tears in his eyes but a big smile on his face"

Alzheimer's affects millions of people in the UK directly, but the impact on family-members can also be significant

31st December 2018

Amid heavenly aspens, flourishing buds and a sparkling river, he saw only a white daisy.

Shamsher Singh Bahadur is a crooked, old Indian-Pakistani man, with more visible veins than white hairs on his head. He can barely walk or talk, but each day without fail, in broken speech, he asked a little boy in the park to pluck that daisy for his beloved wife. At home, he would ask her to sit in his favourite wooden rocking chair — itself now almost 80 years old — and pull back her silver hair.

Only a child upon eating their favourite sweets could understand his joy when he adjusted the flower and Parminder Kauer smiled through her eyes. His wife wasn’t prepared to see him, as she knew the chances were slim that he would even remember he was married. Alzheimer’s has hit him hard — his family too.

Almost a year before he was diagnosed, Singh Bahadur’s 53-year-old son Gurcaran Singh began noticing some troubling signs. At first, his father forgot the names of people he had met. Then he began forgetting the names of his closest friends. Eventually, he became apathetic and uninterested in anything. “I was very frustrated at his lack of interest,” says Singh. “It was a bad time in our relationship.”

Whenever Singh confided in his friends and family, they would tell him not to worry. His father had missed India greatly since moving to the UK in 2000. He had also lost both his parents at a young age, during the India-Pakistan partition, and was used to working a lot back home. They assumed he was suffering from depression.

But on what Singh describes as “the worst day of [his] life”, something happened that changed everything. “We went to a fancy Italian restaurant to have spaghetti. Dad, my daughter and I were sitting and waiting, when he turned to me and asked, ‘Are you married?’ My stomach dropped.”

Every day, I look at my dad and I think about the hopes we had

A day later, Singh made his dad an appointment with a doctor, who referred him to a neurologist.

It was painful for Singh to tell his children that their grandfather had Alzheimer’s disease. “We all sat on the couch and cried for hours. My son kept repeating over and over, ‘Is grandpa going to die?'”

The past year has been particularly hard on his children, who are having to grow up taking care of their grandfather, instead of vice versa. “They don’t mind helping because they love him so much, but it’s not what the average grandchild deals with. They live on edge all the time. When they come home from school and don’t see my car, they think their grandpa is in the hospital again.”

If my daughter had her way, she would spend every waking moment with dad ‘just in case’

Singh explains that his father was hospitalised last September, and given last rites because his lungs were so compressed that his breathing laboured. Now every time he breathes differently, his grandchildren are afraid something bad will happen. “My son tends to stay in his room, and he doesn’t talk much about it. If my daughter had her way, she would spend every waking moment with dad ‘just in case’.

Shamsher Singh Bahadur

“Every day, I look at my dad and I think about the hopes we had. It pains me that he isn’t able to enjoy his grandchildren and be proud of the young adults they have become. I feel hurt, too, about all that my children have missed by not knowing their ‘real’ grandpa.”

Instead of “putting him through emotional confusion”, Singh Bahadur’s grandchildren call him “Sher” — the Hindi word for “lion”.

A couple of weeks ago, he yelled at my wife, then later apologised and begged her to forgive him

Singh Bahadur can’t change his own clothes and, thus, needs help, which can be awkward for his son. It’s disheartening for Singh to watch his father, a former senior agriculture engineer who oversaw large groups of people, now struggle to do basic chores.

But the hardest part is that his father understands that something is wrong. “A couple of weeks ago, he yelled at my wife, then later apologised and even begged her to forgive him,” says Singh. He also apologises for things he has never done.

Despite all their hardships, Singh feels somewhat lucky to live in an area where his dad can receive support. A foundation that they take him to, he says, has been “fantastic” in directing them to the right people and resources, and a local day programme was so taken with Singh Bahadur that they’ve now developed a similar programme for younger people with Alzheimer’s, too.

It is heartbreaking seeing a person you love lose more and more of his memory and becoming almost incapable of performing simple tasks

When Singh Bahadur developed Alzheimer’s disease, his family struggled in their individual ways. His son and daughter-in-law were upset and overwhelmed. His grandchildren were anxious. But his wife coped unusually. “She was not in grief or sadness,” says his 20-year-old granddaughter. “There was no feeling of anger or rejection. She feared nothing, and she was my grandpa’s best friend.

“It is heartbreaking seeing a person you love lose more and more of his memory and becoming almost incapable of performing simple tasks. Grandpa can barely walk, remembers nothing, and needs assistance for every minute thing during the day. But we all were shocked to see how each day he managed to bring that flower for grandma, without fail.”

It’s a sunny Sunday morning, and Singh Bahadur goes to the park to pick up a white daisy for his wife. Hardly does he know he can now only place it on her grave. Parminder Kauer died last April. Her coffin was taken to the gurudwara — the Sikh place of worship –and placed in front of the holy scripture, the Guru Granth Sahib. 

“We were in remorse when we saw grandpa decorating the coffin with white daisies. He had tears in his eyes but a big smile on his face.”

31st December 2018