Tuesday, April 10, 2007

The sad story of Alma

Alma was an only child. Her parents indulged her terribly. Everything she wanted, she got, though her family was not particularly well off. After Alma’s father died several years ago Alma continued to live with her mother and grandparents. Three years ago she got married and insisted that they live with her family. They now have a 2 year old daughter.

While Alma was pregnant she showed signs of kidney problems and the doctors told her to quite eating junk food, avoid salt, and quit drinking Coke, of which she was quite fond. But Alma was always accustomed to do what she wanted to do so she ignored the advice. In January this year she was hospitalized. with a blood creatinine of over 900 Umol/L (normal is 53-97). The doctors found both kidneys shrunken and non-functional and said that there is nothing they can do unless she wants to go on permanent dialysis.

The family of course cannot afford dialysis and there is no insurance or government subsidy here for catastrophic illness. Her previous employer, like many, had not paid her social security so she didn’t have any help from that either. The doctor said dialysis would have to be 2-3 times weekly for the rest of her life plus medications. In addition she would have dietary restrictions - not that she had ever shown much interest in restricting her diet.

Alma was by then quite sick. She had stopped urinating and was instead losing water through other orifices. They took her home. Then three weeks ago she had a dream in which her dead father appeared and told her she needs to live for the sake of her child. So she insisted that she be taken back to the hospital and put on dialysis. Her mother was willing to sell her rickety house and the small plot of land it stands on, though it is unlikely that it would bring enough to cover very many weeks of dialysis and so would only postpone the inevitable. (And then they would have nowhere to live.)

Alma was readmitted to the hospital but her condition deteriorated there, so in the end they took her back home. Alma’s husband had taken unpaid leave from work because of the hospitalizations but feeling the pressure of all the accumulating debt went back to work despite his mother-in-law’s protests that he should stay at his wife’s side.

Poor Alma. In death as in life, her first thoughts were for herself. She asked her husband to never marry again. Her dying wish was to be buried next to her father in an expensive cemetery some distance away that requires expensive vault and coffin. She never seemed to be concerned about where money would come from, and continued to eat and drink what she wanted. These last two weeks she has been mostly semi-comatose. Today Alma died, at age 32.

Alma’s in-laws are upset and some are having nightmares. Alma’s mother has never been shy about demanding money from them for the wedding, the baby, the hospitalizations, medicine. And no doubt she will now demand they take out more loans to pay for the expensive burial. The in-laws feel very stressed at the debt they have already incurred and upset at what seems to them to be extravagance. In fact, the local community fund has offered to pay for burial but Alma’s mother refused because the fund will not pay for the expensive burial in teh expensive cemetery.

I never met Alma. I know her story through her in-laws, who are obviously quite biased. But surely there was something loveable about Alma. Her parents certainly loved her. Even now her mother continues to try to indulge her last whim. Her husband also loved her enough to stay until the end, and it can’t have been easy to watch. And surely her daughter loves her. As for me, I feel very, very sad. I also feel a bit of relief that it is over, yet also some exasperation at the inability of Alma’s mother to see the real burden her need to indulge has caused to others. I also feel angry that employers can skirt the law by only pretending to pay the social security and then when a worker needs it finds out they can't get help because it’s not been paid. Although Alma didn’t seem to be a great candidate for dialysis because of her lack of compliance, yet it distresses me that she really didn’t have a choice because there is no way they could pay for it.

If only we lived in a perfect world....

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