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jojoco_gw

My lovely mom update

jojoco
8 months ago
last modified: 8 months ago

To say it has been a roller coaster of a week would be a vast understatement. Mom is still mostly unresponsive, but has been showing more and more times of alertness and wakefulness. She does smile at us and tracks us with her eyes, and she said the word “yes“. She is once again back on Tylenol only although morphine in a very, very small those is available if she’s very uncomfortable. She hasn’t had morphine in over a day. The bottom line is that she is better today than she was yesterday and better yesterday than the day before. We are measuring progress in tiny little, baby steps, but the hope in our hearts would fill a stadium.

The problem is that all of her doctors are guilty of implicit bias, and in her case ageism. They see this 90 year old, frail woman and immediately start having conversations that invariably use the word “hospice” or the phrase “take her home“. They don’t know what a vital creature she was/is. Never had oxygen, never used walker, never had diabetes, or the host of other stereotypical issues that plague our elderly matrons. We’ve had to tell them that she plays the piano for two hours a day, walks at least a mile a day, is a voracious reader, and writes poetry. Now, they are finally understanding that what we call hope is partly a realistic expectation that she will show improvement.

Our plans now are to remove the nose tube and replace it with a feeding tube in her stomach. Once she is stable from that, she will be moved to a rehab center that specializes in traumatic brain injury in New York City. My father lives there. I will move in with him for a short duration until we get a schedule with my siblings to help.

We are far, far from being out of the woods, but thank goodness we are all on the same page now, and not having to fight doctors who just want to talk about DNR orders.

As for my father, he is hanging in there. I told him that their’s was a love story for the ages and he told me he didn’t want it to end yet. This morning we were saying that mom‘s stay at the hospital has made us all think about our own DNR choices. My dad said that after Mom passes (one future day), if it’s his time, he is ready. Heartbreaking but yet another page in their love story.

Thank you for keeping my mom in your thoughts and prayers. I can tell you guys that having you all here to lean on has made all the difference for me.

Group hug, XOXO

Jo

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