Tuesday, April 19, 2011

What do you want to prolong? #Alzheimers: the toughest question

When one has a cold, you come to a bit of standstill and want people around you that care. I have the flu and now have more time to think - and tonight I watched a show called The Alzheimers Project - brilliant, but oh so close to the personal pain... and one question (asked by a medical doctor to the wife of a victim) resonated with me: "What do you want to prolong?" 
If you have a moment... do watch the segment or catch it on DSTV (103). There are bits of my lovely mom in all of the people in the video clip. I have not really ever blogged about Alzheimers and have avoided talking about it in depth - but have started a FaceBook page called "Vriende of Joey Steenkamp" for our memories of her. Join us any time.

And then this question tonight: What do you want to prolong? Without going into my mom's medical details, I can only answer with the woman in the video clip: the person I love, her - I want to prolong her... and yes, it is selfish. 

I wanted to tour the world with my mom, have her hold her grand children (yes, indeed)... I wanted to prolong our endless laughter about silly things we see when driving around, or just standing next to her at the stove making a creamy white sauce...and so much more. Just a phone call, a text message... her prayer when I go back to work after a visit. It is already mostly gone... I had to let go of each one by one and the choices I have to make are getting tougher each day. And every time I have to ask myself - is this decision for me, or is it for her. Medication may prolong her life a bit, but it also prolongs her illness, and she has no access to the four clinical trials in South Africa - all for earlier stages of the disease. So, hope has been slipping since her diagnoses...
One of my friends @acidicice in Twitter rightly said today: 
@metaMeerkat I think #Altzheimers is a very underrated and misunderstood disease. Most ppl think it's just memory loss :( 
She is my best friend. I am losing her. Indeed, it is not just "memory loss" and I am not ready for this illness. Neither was she. Who is... ever?

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