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.

Friday, May 16, 2014

finding a good caregiver

Have you seen the TV sit-com "Big Bang Theory"?  Even though I'm much older than the actors in BBT, I find BBT very funny. Is that because as I young woman, I myself was one of those nerdy women scientists?  Yes!  I went to college, I worked, I married, I hung out with... geeks and nerds just like them.

In last night's episode “The Status Quo Combustion”  (season 7 episode 4) we continue to see the problem that Howard is having finding home-care for his mother.
Mrs. Wolowitz has always been a loving mother, we've never seen her, we only hear her off camera. Her comedic stereotype is that she expresses her maternal love very loudly. Now that she is bed-bound and unable to do her own self-care, she has more opportunities to be loud and demanding. We see Howard and his new bride Bernadette move into Mom's house to care for her. We see them admit they can't do it all themselves, admit they are putz, and hire outside help. We see a parade of resigning caregivers as they march out of the house, none of them up to the task of caring for Mom.

I am amazed at how much humor and grace the writers and actors of BBT have put into this storyline. It is a minor story line, but it is full of the heartache and exasperation that we have all gone through when trying to find good home caregivers.

Bernadette says with a bit of truth in her joking:  “Howie, I love you. And as your wife, your mother is every bit my problem as she is yours. So… I want a divorce.”  Being a caregiver can put a huge strain on any marriage. How many spouses run the other way when faced with care-giving their in-laws?  But I know of even more son and daughter-in-laws who have been there 100% .   For years and years Gene was the one who gently carried his frail mother-in-law into the bathtub and bathed her.  Ben's mother-in-law "took over" the very center of their small house, her hospital bed, walker, wheelchair, and commode filling up their living space. And Ben was there for her, with new ramps, good food, in-home help, and a place to call home.

I takes a certain kind of person to be a care-giver, to be a nurse, to be a home-health-aide, to be a personal assistant.  I am so thankful for the aides that took care of my Mother everyday at her assisted living residence. They did things that I never could have done.
My Mother's personality became so that she never wanted to move in to my home, never! Until the end, she never thought she needed any help, such was her dementia.
I am so grateful for the compassion that her aides had for her, their patience and their joy.
"I like my job, I couldn't imagine doing anything else."  This was the reply I got from two aides last winter, after I once again cried on their shoulders and thanked them for taking such good care of Mom.

And so it was, with amazement, that our BBT couple, Howard and Bernadette, found a joyous and compassionate caregiver for Mom, in the unlikely person of Stewart, the comic book store owner.  It takes a special person to be a caregiver.