Tuesday, February 13, 2007
Lost , on life's main street.....
A life, with its usual preocuupation with work, the family, children's education , and then facing the eventide, as it rolls in bringing a sudden emptiness as you retire, looking askance at an emptying nest, and wondering what life has in store for you.
A friend of ours , one among a set of several sisters and brothers, a most beloved aunt of so many nieces and nephews, one day, just forgot everyone. Just like that. We spent our vacations at her place, almost every summer; and never having married and had children herself, she indulged in us , and looked forward to our visits. We could get up late, play to our hearts content, and there would be these interesting things she would make for us at mealtimes.
She lived alone. She knew everyone in the neighborhood, and did her shopping almost on fixed days during the week.
One fine day, she didnt turn up for her shopping. Acquaintances who knew her and often met her there, thought maybe she was just taking it easy. Then she came in the next day, and shopped. But she did not go home. The manager of the place saw her sitting outside on a bench, doing nothing. Walking up to her, an old customer, he wished her, and smiled. Hardly any response. He got talking to her. And realised , that although she spoke to him well, it was as if she did not know him, and she had forgotten how to reach home.....
Small towns have bigger hearts.
He drove her home himself, let her inside, and informed her neighbor about what had happened.
This was the beginning of getting lost. This continued in a heart breaking manner, till she stopped recognising us when we came to visit, couldnt place her own sister on the memory mind screen, and occasionally exhibited so much confusion in day to day activities, that we often wondered how she could be the same favourite aunt that we spent our childhod holidays with.
Today, Alzheimer's Disease, which my aunt was finally diagnosed with, has started affecting folks as early as their late fifties and early sixties. The number of people with the disease doubles every 5 years beyond age 65. Alzheimer's disease (AD), basically involves the parts of the brain that control thought, memory, and language. Scientists still do not know what causes AD, and there is no cure.
Losing her way home, and forgetting her address was just the beginning. Then there was this money confusion. The checkout lady was the first to notice. She once handed her entire wallet to the lady at the counter. Thanks to her previous good karma, she did not ever get cheated, but this became a worry factor.
There is lots of research going on regarding what might cause this disease. What is known, is that such people have what are known as amyloid plaques, or something like nerve tangles in their brains. These can be seen in scans. Various blood tests may also test for various protein levels , unique to alzheimers patients.
But to you and me, it is useful to know, what are the typical signs, and scenarios where the Alzheimer "behaviour" as such may be recognised by the family members and friends.
One of the first things you are likely to notice is that the person easily forgets recent events; as recent as where he went with everyone 2 days ago. And there is no awareness that he or she has forgotten something either.
The person will usually suddenly develop trouble remembering words. Occasionally a similar sounding word which doesnt even exist in the dictionary will be used. Sometimes, these folks get repetetive about what they are saying. Remember, they dont know they are being repetetive; its their brain tangle asserting itself.
One of the biggest changes is that the person simply loses enthusiasm about doing things. A sudden turn off. There is trouble organising things, including thoughts. Sometimes when the person realises this based on reactions from around him, he or she simply stops talking.
Typically, the person will start misplacing things around the house. This is often a precursor to getting obsessive about hoarding and searching for trivial things.
Simple actions are confusing. The person will hold on to a toothbrush, not knowing what to do with it. All this leads to some kind of withdrawl into self, which appears to be a logical next step, in a world where simple day to day living starts getting so problematic.
Money gets confusing. They forget how to use money. Forget why they have come where they have come. Sometimes, as in my aunt's case, they give their entire wallets at the check in counter, whether or not it contains the money.
You can try conversation, but there are no guaranteed answers . If you press on, there is anger, and clamming shut. Decision making is very very difficult for them and traumatic. So they stop thinking about it. Even simple things like asking them what food they would like, ellicits a quick reply saying something like "whatever you are having"....
The biggest danger is that of losing their way going to places they would normally reach with their eyes closed, so to speak. This getting lost factor is often the first indication to the family that something is amiss. Other behavioural factors often get attributed to old age, dementia, etc.
The next progression .
At some point, the person starts mixing up people around him. Things become really difficult for the family when a dedicated caretaker family member is questioned as to their identity. Its not uncommon to have a complete mixup between wife, sister, mother, brother, son etc.
There are changes in the persons appearance; inattention to dress, disturbed sleep, behaviour pattern changes.
One curious habit often displayed is a propensity for cutting up paper and tissues. Just like that. And these could be just bathroom tissues, or they could be documents found somewhere. These are often cut up with a great deication to the act.
These folks often get restless towards late afternoon and evening; pacing around, fingering and rattling doorknobs, fiddling around with the drapers is common.
Sometimes the sense of time temporarily disappears. The person wakes up at night and is convinced it's time to get to work. Intellectual work is problematic and there is a definite difficulty is following written requests. Completing tasks is difficult. The person tends to shout and fight , cursing, hitting and abusing people; kicking is also not unknown. It is sometimes amazing to see a perfectly mannered person, become a complete slob with sloppy manners.
Imagination plays its tricks. While watching TV,the person sometimes things it's all happening to him or her. The next step is to make up stories to suit onesself. They will ofte say "XYZ is coming to pick them up" as a completely baseless remark, where XYZ may not even be around.
What becomes difficult is when they start attributing imaginary motives to people, like some member of the family "out to get him". "stealing" , and sometimes, "even accused of having affairs" etc. Its a hard, pathetic attempt by a tangled mind to find a straight path , in what continues to be, for them , a path through the dense jungle, dotted with beasts, some mental, some physical.
Things get serious when they start forgetting things like how to use the toilet seat . Very often such folks need a full time caretaker to attend to their bathing and other needs, as they even lose cntrol over their dressing . What is more, inappropriate dressing , forgetting what is public behaviour and occassionally disrobing etc in pyblic is not uknown.
These are very traumatic times for both the Alzheimers patient and his family. Solutions are very person centric; what works for one person may not work for the other. Interactions with society etc are reduced. It is not unknown for a person to suddenly take things belonging to others and claim they are his, followed by angry outburts, and petulance.
One interesting observation is that whatever the minimal conversation, repetitive or otherwise the person may have with those around him, is often peppered with completely nonsensical gibberish words, made up by the patient,
Deep in the woods:
This is the serious Alzeimers stage.
The person recognises no member of his family. Simple acts like eating and swallowing become difficult; partially due to physical limitations , and partially due to forgetting what food is in the mouth for.
Emptying the bladder and stools is something that happens spontaneously, as they slowly forget about how its done.
Predictably, the person often mumbles a lot, tries to touch and pat things and even cries. The toughest times happen when the person developes problems regarding walking. They forget how to walk, and stumble around , and often fall. In some cases, there are seizures.
Loss of weight is a common feature, and many times, there is a thinning of the skin. All these factors, indicate a dangerous possibility of devloping bedsores, which become a real test for caregivers , of, say, a diabetic patient, in particular. The skin reddens and tears easily.
What is worse , is when one tries to apply skin healing dressings and other stuff, the person shouts and screams, sometimes even hitting out.
Sleep increases. With a complete sense of loss in space and time.
For the caregivers , its a huge punishment to see an earlier active wonderful family member reduced to a stubborm weak, slobbering , confused mass.
For the patient, it has been a long , long trip, on the main road of Life, through well known spots and markers , but now the world has changed so much in his eyes, that there is no looking back or going back.
He is completely lost on Main Street itself.
So where do we go from here ? Are we all condemned to a variation of this maybe, in our old age ? Did our ancestors suffer from something like this ? Is this a result of technology allowing people to live longer and longer, but physiology not enhancing its performance at the same rate ? Does this have something to do with the tons of medicines and chemicals we ingest, as quick and fancy cures , applauded by the medical fraternity as "cutting edge" ?
In the meanwhile, researchers have come up with suggestions for how to live in our old age, trying to keep this terrible disease at more than an arm's length away. The Mayo Clinic people have suggested several activities, vis -avis keeping those parts of our brain healthy, which would normally get tangled into an Alzheimer's jungle .
Learning is the key to all. One needs to keep learning. To exercise the mind in the correct useful manner. Its not rocket science or nanotechnology .
One could try , for example :
* Learning to play a musical instrument
* Playing Scrabble or doing crossword puzzles
* Interacting with others
* Switching careers or starting a new one
* Starting a new hobby, such as crafts, painting, biking or bird-watching
* Learning a foreign language
* Staying informed about what's going on in the world
An active brain produces new connections between nerve cells that allow cells to communicate with one another. This helps your brain store and retrieve information more easily, no matter what your age.
In this modern age, where people are conversing more with machines than with other humans, maybe thats what we all need to try.