Yesterday once more

What does it mean to care for someone with Alzheimer’s? The Mirror Magazine this week takes a closer look at the disease through the eyes of young caregivers whose lives have been changed immensely owing to it. Pic by M. A. Pushpa Kumara

Imagine a chance to live your childhood over again but without your memories, and devoid of any recollection or understanding of what a human relationship is or who the people around you are.
From an outsider’s view, this must be the way *Shivantha Perera’s father sees the world now, from his wheelchair huddled in front of the television. Gazing blankly at the screen.

This is not the way he would have imagined his retirement and little would he have expected to not recognize his youngest son, who from the sidelines together with his mother and other siblings have watched him deteriorate.

The youngest of four siblings Shivantha was the family pet and at 22-years, he lost his father. Not in the way most would imagine. But, to Alzheimer’s - the most common form of dementia, a general term which is used to refer to memory loss and other intellectual abilities serious enough to interfere with daily life. Alzheimer’s is a progressive and fatal brain disease, which through time destroys brain cells, causing the loss of memory and problems that deal with thinking.

Unlike other diseases Alzheimer’s affects not only those who have it but has a huge impact on the caregivers themselves.

“It was when he was about 59-years old that we noticed the symptoms. My father was a very sharp man, he was healthy and when he started missing a few steps in his life, we were concerned and realized something was wrong,” recalls Shivantha, who is now 34-years old.

Being the youngest meant that Shivantha was the one who remained at home long after his older siblings married and started families of their own.

“We went to so many doctors who told us different things each time. They said that since he was losing his sight, the mood swings were due to his frustration at not being able to read. But no one gave us a proper diagnosis.”

Shivantha recalls days when his father unable to differentiate the hours of the day would wake up in the middle of the night and start talking. “He would be suspicious of us and it just was not like him, and a lot of the tension and tempers that flared was because we didn’t know that it wasn’t his fault.”

His father’s condition continued until a relative who practices as a physician in the US came to Sri Lanka on a holiday, and finally gave them a firm word. “He said we needed to prepare ourselves, while being understanding. And that there was nothing we could do change his condition.”

The last person that Shivantha’s father remembered before completely losing his memory was his mother. “It was hard to see the toll it took on my mother, who cared for him constantly, and she shut herself out completely from everyone else, I am more concerned for her than him. They were such a loving couple and next year they will celebrate 50-years together,” he says.

Shivantha’s memories of his dad are filled with times of sitting by his side and going through all the Sunday newspapers with him during the initial stages of his condition. Unlike other diseases Shivantha points out that Alzheimer’s affects not only those who have it but has a huge impact on the caregivers themselves.

He admits to times when he himself was in denial of his father’s condition, while recalling with regret the times when they didn’t know what his father was going through. “It was an immensely trying time, we were tested as a family in every way possible - financially, spiritually and emotionally,” he recalls.

Shivantha’s father who also suffered a mini stroke lost his sight. A few years back he lost his speech as well. He believes that his father has now reached the last stages of his condition. Today, when Shivantha or his brothers help out with caring for their father – a stiff clasp of his father’s hand, clenched in fear of the world around him is all they have as a reminder of the spirit of this man they knew to be as the best father in the world.

“There should be more awareness so that families will understand that it’s a disease he did not bring upon himself. There should not be sympathy, but more understanding. My only regret is that I had him only till I was 22-years old and when I needed him for advice as I got older, he wasn’t around,” he says sadly.

For 24-year old *Anushika Fernando, fate was not so kind. She was just 17-years old when her 52 year old mother at the time was diagnosed with vascular dementia. She too is the youngest of a small family of four.

Anushika’s mother’s condition was brought to light while on vacation in the UK when a cousin suggested that it could be Alzheimer’s. Her mother was diagnosed in 2006, by which time her brother had already left to the US for his studies.

“My mother’s condition has changed my life completely. It’s just my dad and myself that represent the family at functions, now,” says Anushika “I use to depend on her a lot, but now I’m more independent.”
Caring for her mother together with her father, has not been easy, especially since her mother was in denial. “She has her good days and her not so good days.

But these days she doesn’t like it when people come over,” says Anushika, pointing out that her father who now cares for her mother constantly, is her rock. “My mother always looks for him when he is not there, and he hardly gets out of the house as a result. But I try to get him to keep in touch with his relatives, and we alternate the days when we go out so that someone could be around for her.”

Anushika says that when she started reading about the disease, she realized that her mother’s condition was not going to change. She recalls a poignant moment at her brother’s wedding in the USA, when her mother was unable to take on the role of mother of the groom “That was really hard for him (her brother),”she recalls.

However, fortunately for Anushika who came to know of the work of the Lanka Alzheimer’s Foundation-an approved charity, she knows that she and her dad are not alone as caregivers. The foundation which supports them is in the process of collecting funds to set up a day care centre and is also in the forefront of creating awareness of the disease. In addition, they hold meetings for caregivers twice a month where a neurologist and a psychiatrist sit in on the sessions to answers questions from those who attend, and the forum allows caregivers to learn from each other. The foundation also provides advice and also support in the form of supplies such as adult diapers, cotton wool, gloves at subsidized rates, thereby easing the economical burden on families.

So what does Anushika miss about her mother the most? “Her cooking,” she says. “She was a wonderful cook, but at least now I’m learning.” Each day brings with it a new challenge for her and her father, “Her moods change and the medication she takes has its side effects as well. It’s a trial and error process,” she says.
- Lanelle

*Names have been changed

Remembering those with Alzheimer's

To coincide with World Alzheimer’s day the Lanka Alzheimer’s Foundation has organised a concert at St. Andrew’s Scots Kirk on Tuesday 21st September, 2010 at 7.p.m. The concert will include voluntary performances by the de Lanerolle Brothers, Natalie Gooneratne, Denham Pereira, Norma de Silva, Lenny and Shaenali Vittachi, Voice Print and the Voice of Praise. In addition to the concert the Foundation will hold its annual walk on September 25, 2010 to raise awareness. For those who would like to know more please contact the Lanka Alzheimer’s Foundation on +94 11 2583488 or email alzheimers@alzlanka.org

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