Chennai-based Jazz musician Donan Murray knows it all too well. His 70-plus-year-old mother has been suffering from Parkinson’s and Dementia since 2008, and over the years, it has progressed rapidly. “My mother is completely bedridden now. She has round-the-clock care in my house,” he explains. “There are CCTV cameras, full-time hired help – four boys and two girls who work on shift basis, bathroom walls lined with holding bars when she used to walk, movable potty chairs and custom designed sitting chair, among other things. It runs like a prison with a set time-table for everything.”

Actually, there are three – one each for eating food, taking medicines and when nature calls. Visiting hours are 10am-1pm and 5pm-7pm. Sounds like a well-laid plan, doesn’t it? Not always, and as Murray puts it, “It was chaotic at best in the beginning and I didn’t have a clue what to do.”

‘Home Nurses Have No Clue What To Do’ 

As a caregiver, one of the challenges he faced was getting attenders or professional ‘home nurses’ for his mother. Murray went through 60-70 applications before he found the right one, and even then it was a challenge. “In the beginning, attenders would change every few months. Some left on leave and never came back, I had to fire a couple of them after a few weeks and then there were those who couldn’t take it anymore and quit. Most people sent by agencies are thoroughly useless. It’s not their fault, though…they are not trained for this,” he says.

A fact endorsed by 60-year-old Maya Devi Nambisan, another primary caregiver from Kerala, who had to change attenders 16 times in less than two years. Her mother suffered from Dementia for more than a decade. “The longest someone stayed was for a month. Attenders have run away after just two weeks! Agencies do not tell attenders anything about the patient’s health problems. So they come home thinking that it’s an old person who just requires some assistance to bathe, walk and dress-up,” she says.

There were times when her mother would spit out food; one of the attenders sent by the agency slapped her. “I sacked her that day. Another lady tied-up my mother’s hands to prevent her from tearing her clothes and removing her diaper. When I saw the bruises, I questioned the lady,” laments Nambissan. “She was genuinely shocked at my reaction. She didn’t know why it was such a big deal. I sacked her too!”

Why Attenders Cannot Cope

Many attenders or the so-called ‘home nurses’ take up these jobs due to dire situations – poverty, abusive spouse, widowhood, abandonment and even family pressure to get married are some of the reasons. But despite the lack of know-how about Alzheimer’s and Dementia, Murray, however, doesn’t begrudge attenders’ misguided attempts at care-giving.

“Do you know the insanity of listening to the same sound, word or phrase repeated over and over and over again for a long time? I’ve known attenders who have stuffed pieces of clothing into their patient’s mouth. Yes, it is horrible and mean but before you judge the attenders, try and put yourself in their shoes. What can they do? They cannot tell patients to stop or get irritated…or even yell. It will get worse,” he avers.

Despite reading a lot about Alzheimer’s and Dementia, it took Murray and Nambissan several years to understand what to do as a caregiver. “But even then, sometimes I think it’s not enough,” says Murray.

No Counseling or Guidance for Caregivers 

That’s another problem – being a caregiver to a patient with Alzheimer’s and Dementia is an uphill battle. It’s exhausting and takes a toll on relationships with their spouses, partners and friends. Murray’s wife, Vinita Nayar, a senior freelance journalist, elucidates: “I resented his mother and the disease…the incessant changes in our daily routines would drive me mad. I’d fight with Don, and later feel miserable and inhuman for not being more patient and understanding. His health and finances suffered, and our work suffered too – it still takes a hit sometimes. The helplessness he and his siblings feel…I mean, it’s just unbearable. Alzheimer’s is a cruel disease; I wouldn’t wish it even on my worst enemy.”

“It’s a horrible thing to watch your parent drift away but what to do…she was my mother. I did what I had to; it wasn’t easy, though,” adds Nambisan, whose mother passed away a few months ago.

These Are Not Isolated Problems! 

Curiously, caregiver’s stress and the lack of finding qualified people who are also affordable are not India-specific problems. For instance, in a developed country like the US, properly trained medical home nurses for patients with Alzheimer’s and Dementia are either too expensive or rare. “When my father was diagnosed with Alzheimer’s around five years ago, my siblings and I hired people to take care of him. Most were college kids looking to make a quick buck and a few were in between jobs,” explains Dr. Christopher Barry, an American liver specialist living in India. “Both my brothers and I had full time jobs and we’d get calls that dad had disappeared – he had wandered off somewhere. Sometimes, he couldn’t remember who the attender was…that created a security problem. We managed somehow but it was hard on all of us.”

Aren’t there trained nurses available for patients with Alzheimer’s and/or Dementia? “Of course there are, but they are expensive. They’d charge anywhere to the north of $200 per hour…and those are the ‘reasonably’ expensive ones,” says Barry, whose father now lives in an assisted living facility. “On the day I left him at the facility, people there told me to say that I was going for lunch and just leave him there. To do that was the toughest thing for me! This man is my father – a vibrant, intelligent and a famous forensic psychiatrist in mental illness and the law. At the time, I felt like I was abandoning him. Now, at least I know he’s safe and well cared for.”

There is nothing soul-inspiring about taking care of someone with Alzheimer’s and/or Dementia. There is no light at the end of the tunnel. When the disease progresses, symptoms worsen…patients’ physical and mental faculties take a huge hit. There’s nothing caregivers can do except manage the symptoms and yes, ensure they’re properly taken care of by their attenders.

• s  Alzheimer’s disease is a progressive disease and the most common cause of Dementia.
• s  Proteins build up in the brain to form structures called ‘plaques’ and ‘tangles’. Nerve cells lose connections between themselves and eventually die.
• s  The earliest symptoms for Alzheimer’s are memory lapses. As it progresses, problems with communication, reasoning and orientation become severe. In the later stages, they may have difficulties eating or walking without help, and become too frail. Eventually, they will need help with all their activities.
• s  Twice as many women over 65 have Alzheimer’s disease.
• s  There is no cure for Alzheimer’s and Dementia.