Tuesday, February 24, 2009

When do you let go?

There's been a lot of confusion about the status message I posted the other day. A lot of people have been worried that there's something wrong with the twins. First of all let me assure everyone that the twins are doing great. They're both on track and are already beginning to show distinct personalities. One quiet and shy (like John). The other --- not quiet and shy (like me). But thank you for all your prayers and well wishes.

The post was about my mom.

She was hospitalized last weekend for an infection, and yesterday her doctor met with us to discuss some very hard but very necessary decisions that we needed to make on her behalf.

You see, my mom has Progressive Supranuclear Palsy. It's a very rare degenerative neurological disease that has caused total body paralysis. She no longer walks or talks. She cannot make voluntary movements. And dementia is the final, awful phase of her disease.

Because it is degenerative in nature, all of this did not happen to her in one fell swoop. It happened in sporadic episodes. First the ability to keep her balance, then ability to move her legs. She became incontinent, and then lost the ability to swallow. That was the hard part. Because of that we had to put in a tube in her stomach where we could feed her with liquid food. Then we had to put a tube in her throat to suction saliva and mucus that pooled in her throat.

Now she can no longer move her head from side to side. And sometimes she forgets to blink.

More than the physical toll on her body, the disease has been hardest on her spirit. 

My brave, strong, hard-working mother has been reduced to a shell of her former self. It's cold consolation that she no longer understands the daily struggles she has to go through.

If you knew my mother back when she was still well, you would understand why seeing her go through all this is so hard. She was such a tireless person. She raised 4 kids full time, ran our household like a captain runs a ship, and was the kind of wife any man could be proud of.

I remember when we were kids, my dad would throw these dinners at our house and my mom would cook everything from scratch. From the bread, the main course to dessert. Then in between all that cooking she would find the time (and the strength) to make sure the house was spotless, the kids were presentable, and fresh flowers were on the table. She could do this for a group of 4 to 40. With just a day's notice.

Even now part of me wishes I could be half the home-maker my mom was. 

And that's the perfect phrase to describe her: a home-maker. 

She made our house a home. The kind any kid wishes he could come home to. Where every thing was always in order, and there was always good food around. The kind where you learned the values of being responsible, diligent and hard-working. And the kind that gave you life skills you never thought would be important, but now that you're older and on your own are essential: how to cook, how to clean a toilet, how to market, how to train household help, how to launder and iron. And most importantly - how to raise decent God-fearing kids.

And now the whirling dervish that was my mom in action lies quietly in her bed. Instead of hearing her yell at us in Bisaya to pick up after ourselves, all you'll hear now is the not-so-quiet hiss of the suction machine that keeps her from choking.

I have not heard her speak in almost 4 years. And I miss the sound of her voice. Raised in anger or quietly whispering words of reassurance --- I'd give anything to hear it again.

And now back to the hospital.

They have asked us to review this document that outlines several medical procedures. Beside each medical procedure are boxes marked: "Withhold" and "Withdraw". 

Because her hospitalizations are becoming more and more frequent, her doctors have advised us that she may be in a state of deterioration. The next major infection could be her last, and the next time we bring her to the hospital we may not be able to bring her home anymore.

So they want us to specify how far we want them to intervene medically. This is something we have to specify because unlike someone who gets into an accident and has a chance of surviving, my mom is "medically futile". Meaning no matter what we do she will never be cured, she will never get better. All we can do for her is manage her "quality of life".

Medically futile is the saddest phrase I've ever heard. More than terminally ill. At least terminally ill has end. Medically futile can drag on for years. She has been sick for almost 8.

So now we have decide whether or not we agree to let the hospital do the following (in case the worst happens):
- Defribrilator
- Dialysis
- Nutrition
- Invasive procedures (like central lines, etc)
- Intravenous fluids
- Ventilator

Some are easy like Nurtrition and IVs. Why on earth would we withhold those?

Dialysis is on the fence. It's painful and invasive but the alternative is pulmonary edema (which is like drowning out of water).

CPR and de-fib form part of a DNR order. Do not resuscitate. 

It's like asking us: At which point are you willing to let your mom go?

How much of this is the need to give her the best medical care, and how much of it is our desire to keep her with us a while longer? Because even if she's no longer herself, she is still our mother. At least we can still see her, touch her, kiss her and tell her that we love her.

These are questions we were faced with before with my dad. And it's so painful to be faced with them again for my mom.

I have signed 2 Do Not Resuscitate orders in my life. One for my father. One for Ines.

Where will I find the strength to sign another one?

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