Uma Iyer, a freelance consultant with IBNLive, writes about her father-in-law’s daily battle with the Alzheimer’s disease on the world Alzheimer’s Day.
What is Alzheimer's disease?
It is many things but for someone who has to live with it every day, it is a nightmare and the bitterest memory of what his life once was.
Science defines it as an incurable, degenerative, and terminal disease that is the most common form of dementia.
In simpler terms, it means that your brain unlearns everything it has over the years, cell by dying cell. It is incurable and when it sets in, the body is left behind as a soulless window to what it was.
My father-in-law has been diagnosed with AD (Alzheimer’s disease). My family and I are what they call primary care-givers. A neat clinical term that goes a long way in saying the wife, daughters and son has ceased to exist.
The point of writing this is not to just rant about AD but to see if I can, somehow manage to explain to the others who are struggling to come to terms with it, what the disease means.
Some three years ago we noticed that appa wasn’t hearing well. Minor issue that. An aid could rectify it, right? Wrong. Tests showed partial hearing loss but that was it.
It was followed by a series of vague replies, long sleeping spells, incoherent words and actions. More tests and the penny dropped. Mild Cognitive Dementia they said. Alzheimer’s they said.
We didn’t even know what it was. They spoke of memory loss and degeneration of cells. But we didn’t understand. How could anything be incurable? How in this age and time can you talk of not having a treatment?
What do you mean he won’t remember us or his name or his ability to chew? It is not some stranger we are talking about here … it is our father. The person who was the pillar of the house.
Our agitation notwithstanding, the pillar did crumble and the weight of the house is felt each time he talks to his son like a stranger, every time he sees through his wife of 48 years, swears at his favourite daughter.
We would have been completely at sea if not for a kind gentleman who also happens to be a member of the Alzheimer’s Society of India, Delhi Chapter. We had gone to see him about hiring a person who could help us out with appa, someone with prior training, a nurse maybe.
He explained the terms, its effects and end result simply. He didn’t sugarcoat anything, he just spoke from experience.
AD, he said was a down-hill journey all the way. There are no good days and there is no hope for recovery. It’s like your brain is a blackboard with lots of things chalked down on it and then, this giant hand with a giant duster just rubs it all out.
It should have scared us but it did not. We had information we could understand, could relate to. We had it all in the clear. Now it was up to us to make the best use of it.
And it is because of that talk that I write this; for whenever we are in the middle of another what-do-we-do-now situation we automatically reach for the phone or retrace to his little talk. Maybe the others out there in similar situations do not have someone to help them demystify AD. This is for them.
The biggest pain in AD is the inconsistent behaviour pattern. No two cases are similar. Though there are certain trends, there is no hard and fast rule to how an individual with AD would react to situations.
Even more confusing is what seems to be the set routine for one week, might suddenly change drastically the next. For example, one week appa would want to spend the whole day outside, just walking around the park, apparently searching for his house.
The next week, he would absolutely refuse to budge out of his bed. The week after, he would insist on being driven around looking for a certain building.
This lack of consistency means the care takers have to constantly reinvent ways to keep the person occupied.
This could be done by getting them interested in a puzzle, getting them to sort vegetables, arranging blocks etc. For us, rajma (kidney beans) proved to be the God send. We mix two kinds of rajma (red and black) in a huge bowl and pretend to sort them around appa. His interest is immediately piqued and he spends a good hour sorting them into two neat piles.
He tends to forget what he has said or done in a matter of minutes. This is both a boon and a bane for us. It is a problem when he constantly repeats himself, insists on bathing 4 -5 times a day, asks for food 5 minutes after he has eaten.
It is helpful when his attention can be deviated by getting him to do the same chore time and again. Though for how long one particular thing would keep him interested is hard to say.
Before the rajma, he would insist on sorting all the green leafy vegetables. He would forage for them all over the kitchen, but today, the bundle of spinach barely gets a second glance.
One of the golden rules is to never, ever, disagree with the patient. Arguing or disagreement only leads to agitation. Even if the demand made is irrational, irritating, amusing, strange… do not say no and for heaven’s sake do not lose your temper.
Just find a way to digress from the topic. Bring out a new book, switch on the TV, smile and walk away, talk about something else … anything is fine, just do not say no.
A person with AD does not comprehend pain the way you and I do. They might not realize they are using a knife to comb their hair or touching a hot vessel to get you to quickly make coffee for them.
It is advisable to lock away sharp objects and to store the glass furniture and heavy vases away, get locks for the kitchen and bathrooms. Speaking of bathrooms, spread an old bed sheet on the floor so there is no worry of slipping. Clean and disinfect the toilet seat to avoid infections.
Another common thing is fear, often unfounded but it is there… the fear of getting lost, being left alone, being beaten. The fear may stem from some childhood memory/suppressed memory. An old insult, a wrong done, a false promise. Be prepared to hear about it. A lot.
There have been cases where the hired help have physically abused the patient. Constantly interact with both of them to avoid such nastiness.
I have often heard that appa was a gentleman who seldom raised his voice and never got furious enough to throw a punch. It is difficult to believe it when you are faced with a snarling, violent man who is ready to hit you at the slightest opportunity.
The kind of strength he displays is amazing. Frail as he has become, it takes 4 of us to subdue him enough to be able to change his clothes or cut his nails.
When my 14 month old daughter throws a fit while taking a bath, I just hold her down and get on with the job. But with appa, we have to be infinitesimally gentle.
The other day while we were changing his clothes, he scratched himself while trying to hit out. There was blood all over, but he didn’t flinch. He was more bothered about being held down and once he could get up, he just walked out of the house, bleeding nose and all.
During one of his phases, appa gave up on eating almost completely. He only ate curds. So we took to grinding dal, rice and vegetables and topping it with curds. Now he eats only roti and sugar, loads of it; so we give him the roti and show him a heaped spoon of sugar and sprinkle a part of it.
Yes, it all sounds so deceptive, but what needs to be done, needs to be done. Alzheimer’s has taught us one big lesson in life, to be practical. It hurt like hell when we went to the doctor’s the other day to ask for sedatives.
Thankfully that could be avoided by increasing his dosage of anger suppressant, but we know the day will arrive when sedation will have to be part of the plan. Just like the loss of bladder and muscular control will have to be dealt with.
Talk to your neurologist about the medication. Though there is no treatment to cure, delay or stop the progression of Alzheimer's disease, there are medicines available that temporarily slow worsening of symptoms.
Trained help is very hard to come by, usually the Alzheimer’s society people train the regular household help. It’s cheaper and the helper tends to be more reliable.
We are a large family and we have good neighbours to support us. I wonder how people without either of them manage. We are fortunate to be stable enough to afford a hired help. I hate to think of what single income, no support families do in situation like ours.
Each of us gets time to unwind once in a while or we would all be headed towards a break down. This is another luxury we can afford, thanks to the many helping hands, but my thoughts head towards nuclear families and parents with children settled far away and I wonder. How do they get by?
All I can say is keep the patience, keep the love and cling to the sense of humour.
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