Saturday, May 24, 2014

opening the door

February 28th, I was roused by the phone chirping at 2:20 in the night. It was the nurse from Mom's assisted living residence. Mom had been awake and fitful all night, her oxygen levels are low, she has difficulty breathing, gurgling, she has a fever, they might take her to the hospital. What does this mean? I don't understand. I'm half asleep.

I had seen her at lunch, just 12 hours ago, she had been fine, her usual self.

So, I go to the computer. My searches lead me to pneumonia. Pneumonia for a healthy person is different than pneumonia for an elder with dementia.

"The old man's friend" was a term I'd hear often, in the next few days.

The nurse called back, they were taking her to the ER.

I grabbed my "all about Mom journal" and her folder of important papers (med. list, the HCP and POA...), my sewing basket, tooth brush, and kissed my husband goodbye.

Mom was there in the quite ER, they put an oxygen tube in her nose and an oxygen monitor on her finger.  She screamed when they took her blood pressure, her frail body not able to withstand the squeezing, she screamed more when they took blood.  They came with the mobile Xray machine to image her lungs.

It seemed like the doctor returned immediately - with words of "severe pneumonia" and "start aggressive antibiotics".

Yes, all these things that I read about, an hour ago on the computer.

I began to shake and cry, I looked at the doctor and shook my head.
"Let's step outside"  he said.

This was the hardest thing I've ever done. To tell them I did not want them to give my Mother "aggressive antibiotics." I did not want them to take her down that path.  The ER doctor understood, he did not question my decision, he let me cry and shake and blubber my request.

The ER nurse came in to check on Mom, "I had to make the same decision for my father...  it is a hard decision..."
Another doctor came to see me. She outlined what was going to happen: comfort measures only CMO ... morphine to help her breath... a quiet room upstairs...

Mom was not really alert, she was having a hard time breathing, she didn't want the oxygen tubes in her nose, she was not comfortable laying on her back, the drug port in the back of her hand bothered her.

Am I doing what my Mom would want me to do for her?  As her health care proxy I've always questioned my decisions - especially when my decisions are not what "angry dementia Mom" wants. And here we are, with the biggest decision of all.  Here was Mom's "exit event".  Here was a door that I could hold open for my Mother, so she could leave.

So I sat, and sat, and waited. How long would we be here: days - weeks?
I talked with Mom - she could not respond. I massaged her hands and arms with moisturizer. I combed her hair and washed her face. I kissed and cried. The hospital brought coffee and muffins for me and ice water for Mom. I dampened her mouth with a strange sponge on a stick.  The hospital staff kept her clean and comfortable, but they mostly just let her be.
My brother had jumped on a plane and was flying, to be here.
My friend Purple Woman came and sat with me. We talked and sat and waited.

28 years and 30 years ago, I was in this same hospital, on the same floor, birthing my sons. I labored for days, breathing hard to bring my precious babies into the world. That day, my precious Mom labored with every breath. She was breathing like she has just run a race. She was fitful most of the day, awake and yet not awake.
Finally that evening, she relaxed and fell asleep.
By morning... she had gone.


Carol Noren Johnson said...

Very dramatic. Glad you are documenting this.

I have thoughts about "do not resuscitate" issues for the terminally ill. For me it is not about when I am ready to say good bye, but when it is time my LORD will take my husband who has dementia.

But it is soooooo hard.


Tracy said...

Sending prayers.

Anonymous said...

Hi Mariarose,

Thanks for your commment on my site!

I can see from your blog you are dealing with similar issues, sorry to hear...

Will be following!

DG x

Anonymous said...

You made me step back into the room with my Dad on his last dementia but the frightening reality that he knew his time on earth was up. After reading this post, I am praying that I will not be faced with those decisions for my Mom. You have a brave, compassionate heart and your Mom felt that inside her mental prison. I know that she is eternally grateful that you allowed the door to open and let her dance her bushy squirrel dance again! Hugs.

Anonymous said...

Amazing to be there for a birth! Generations continue through the birth of grandchildren and great grandchildren. The feeling of love begins with that first snuggle and though you didn't give birth to them, you feel totally connected! Joy, joy, joy and happiness with each milestone that your new granddaughter reaches. Hugs.