Liv­ing fear­fully in the shadow of de­men­tia

The Asian Age - - Dis Course -

Mr George stands in front of his house from morn­ing to evening and looks at peo­ple pass­ing by. He greets me ev­ery morn­ing, al­ways with a smile. He is grow­ing a mus­tache these days. The rest of his face is clean shaven, ex­cept for patches the ra­zor for­got where clumps of hair grow like oc­ca­sional cacti. The ef­fect is ill- kempt.

He asks me my name, ev­ery day. I tell him. He then en­quires af­ter my fam­ily, where I work and where my kids are study­ing. I tell him in the mi­nut­est de­tail. I’m not al­ways this pa­tient though. Some­times I walk away with a smile. He wasn’t al­ways like this. He used to be my teacher in math­e­mat­ics, a bril­liant man.

Mr George is dis­abled. He has se­nile de­men­tia. He doesn’t know who I am, he can­not re­mem­ber any­thing I say. If you and I live long enough we might be­come like Mr George. Up to 50 per cent of peo­ple above 85 show symp­toms of de­men­tia, with loss of in­tel­lec­tual fac­ul­ties, in­clud­ing the abil­ity to re­mem­ber and con­cen­trate. The first symp­toms are loss of short- term mem­ory which usu­ally slowly pro­gresses.

There are many kinds of de­men­tia. In the se­nile kind, brain cells lose their or­gan­i­sa­tion and com­mu­ni­ca­tion. In Alzheimer’s dis­ease ab­nor­mal pro­teins are laid down in the brain, se­verely af­fect­ing func­tion. De­men­tia is also caused by brain tu­mours, drugs like al­co­hol and vi­ta­min de­fi­cien­cies. In these lat­ter types dam­age to the brain may be re­versible.

It is of­ten said that the peo­ple most af­fected by de­men­tia are those who care for the af­fected. Close rel­a­tives can find it very hard to see peo­ple they have love de­te­ri­o­rate be­fore their eyes. Char­ac­ter­is­tics which made the in­di­vid­ual unique are lost one by one un­til she is re­duced to a life sys­tem ded­i­cated to mere ex­is­tence.

De­men­tia is no re­specter of per­sons. George Fer­nan­des is one suf­ferer. Ron­ald Rea­gan was an­other. Sugar Ray Robin­son, one of the most fa­mous box­ers of all time, and the ac­tor, Rita Hay­worth, are on that list.

But suf­fer­ing is not re­stricted to care­tak­ers. In the early stages of the dis­ease the pa­tient is aware of his plight.

Short- term mem­ory loss grows from mildly an­noy­ing to dis­abling. The suf­ferer loses his way in streets he has known all his life. He for­gets where he has placed things. He can­not re­mem­ber new faces or names. Old habits like read­ing are no longer pos­si­ble. There is tremen­dous sad­ness. And as one by one the doors of mem­ory shut down, old child­hood fears are rekin­dled and resur­face as panic re­ac­tions to nor­mal stim­uli.

But it cer­tainly is hard for care­tak­ers. It is dif­fi­cult look­ing af­ter re­gress­ing adults. We care for our chil­dren ten­derly. Chil­dren can be tough, but they have prom­ise. A child is an adult in the mak­ing, a whole life be­fore her. She has some­thing to de­liver. The old man or woman walk­ing off into the sun­set is never a prom­ise to the rest of us. The prom­ise is over, per­haps it has been de­liv­ered, per­haps not, but the old duffer has been there and done that. He has noth­ing to look for­ward to, ex­cept an even­tual death. Un­til then he will re­peat ques­tions, make fool­ish mis­takes and passes urine and stool wher­ever con­ve­nient. We think of even the worst be­haved chil­dren as cute. But cute would not be our word to de­scribe an old man singing nurs­ery rhymes at the top of his voice at two in the morn­ing.

The present state of med­i­cal care for de­men­tia is de­press­ing. Con­versely we have learnt how to cure or con­trol many of the ills that ail the body. Our life spans keep in­creas­ing. Never be­fore in our his­tory have we lived so fear­fully in the shadow of de­men­tia.

We have tried to un­der­stand this en­emy. We know that there is of­ten struc­tural dam­age in the de­men­tias as ev­i­denced in the MRI scans as a smoothen­ing of the nor­mal con­vo­lu­tions of the brain with age­ing, a loss of brain vol­ume and ab­nor­mal pro­teins de­scribed as plaques and tan­gles laid among nor­mal brain cells. Neu­rons lose rigid or­gan­i­sa­tion and break free, and what we think of as the mind — the brain in ac­tion — changes. The brain be­comes a bun­dle of in­de­pen­dent neu­rons and the mind van­ishes.

But the body moves on. The body still re­mem­bers how to walk and talk, how to eat and how to ex­crete its wastes. It re­mem­bers how to heal it­self. It re­tains its re­mark­able ca­pa­bil­ity to main­tain ho­moeosta­sis, which dis­tin­guishes a liv­ing sys­tem from a dead. Ho­moeosta­sis is the main­te­nance of a con­ducive en­vi­ron­ment for life pro­cesses to work within hos­tile ter­ri­tory. The pH of blood is main­tained at 7.35, blood sugar be­tween 80 and 120 mg per cent and blood pres­sure at 120/ 80 mm of mer­cury. The or­gan­ism lives on in the midst of de­men­tia.

My grand­mother lived on for four years af­ter be­com­ing to­tally de­mented un­til she for­got how to eat. Dur­ing that time she sus­tained two ma­jor frac­tures in her shoul­ders which healed by them­selves. She wouldn’t tol­er­ate a sling. She kept mov­ing her shoul­ders and cried from the pain. The pain would sub­side af­ter a while and she would for­get about it and move the arm again. Both frac­tures mended in a month. The body re­mem­bered to heal even when the brain had lost all mem­ory.

Per­haps each one of us must pon­der over our own com­ing de­men­tia. This is even more dif­fi­cult to en­vis­age than our deaths, for death has a cer­tain melan­cholic hero­ism. There is a sense of fi­nal rest­ing about death, while de­men­tia is a rag­ing travesty of hu­man dig­nity. Con­sid­er­ing the rav­ages of the dis­ease, the in­ef­fec­tive­ness of treat­ment in most cases and the toll it ex­acts on our loved ones, a vol­un­tary de­par­ture from life may be con­tem­plated by many suf­fer­ers. In fact al­most 25 per cent of de­men­tias co­ex­ist with de­pres­sion. If a pa­tient with de­men­tia talks about com­mit­ting sui­cide, be warned, he or she may carry it through.

As with any chronic dis­ease the pain of de­men­tia needs a lot of sup­port. This is some­one we love dearly; we must walk with him even when he wan­ders on, lost to us in the sec­ond, un­car­ing child­hood.

( The writer is an orthopaedic sur­geon)

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