We got home from the last hospitalization on Wednesday,
April 17th. I was kind of
amazed we were home at all, much less this quickly after such a horrendous respiratory
event, but there we were, home sweet home.
We had appointments lined up the following week with Great
and Wise and a little further into the month we were going to see the lung
doctor and then the cardiologist. In all
the respiratory melee we had discovered Marty had an aortic stenosis, and to
point out how acute the respiratory issue was, this wasn’t even on the first
page of concerns.
When we got home it was clear Marty was very weak and suffering
from the trauma her body had inflicted upon her.
I was wired head to toe, and I was waiting for the next shoe
to drop, I was scared. All that happy
talk months before about living in the moment and not planning a funeral every
time Marty coughed had gone up in smoke.
I was back in a grievously familiar feeling where I could feel my heart
beating in my temples 24 hours a day.
Keep in mind we have good help. We can do almost the same things to care for Marty
they do in the hospital and more than they would do in sub-acute care. But,
when you are in the hospital you don’t have to figure it out yourself, there
are really skilled people there to help.
At home, I’m it, I’m the skilled person who must make decisions and that
is a terrific burden when you are deeply in the love with the person you are
watching.
Marty was weak, tired and couldn’t really help when we moved
her from bed to chair and back again, she couldn’t support herself at all. Wednesday she got two baths to wash off the hospital
funk, Thursday she slept and I paced and fretted about her sleeping, Friday she
seemed better and we sat outside talking for a while, Saturday was the same,
doing okay, not great, but strong enough to go outside. Sunday she was really tired and stayed in bed
all day, it was a sign.
Monday, not long after the home health nurse came and
checked her out Marty started acting sick again. She does this body thing, her body contracts to the left, this nebulous thing
I have to tell the ER docs about, and they look at me and think I’m one of
those hyper vigilant nuts who overreacts all the time (I am that exactly).
Marty cooperated and ran a fever, in the nurses eyes, in my
eyes she was legit sick again, she was legit sick again probably with upper
respiratory crud. We were back.
They moved her to ICU again out of an abundance of caution,
bounce back patients scare the docs a lot, it makes them look bad. I was good with ICU, the nurses there are great,
and someone is watching all the time.
The next day Marty’s white count (a sign of infection) was
down, not normal but down, and we moved to a regular room, 329. I figured we were there for a few days and
home again by the end of the week.
I kept coming up to the hospital earlier every morning to
catch the rotating docs looking after Marty.
It’s a game, a losing game, to figure out when they would be there. About Thursday the docs started talking about
going home in a day or two, that kept getting pushed back with new x-rays, a
new diagnosis of thrush and anemia, and finally a rash we think was a result of
the meds for the thrush. We were stuck
in a medical loop and Marty looked and felt a little like Job, waiting for the
next thing God would throw her way.
We rolled along until early Friday morning, May 3rd,
the morning she was scheduled to get a PEG tube in her stomach to avoid
swallowing and aspiration issues. That
morning, early, all of the sudden, she got sicker, she threw up and started
again with the same respiratory distress we had seen earlier. In case you haven’t seen it, don’t, real
respiratory distress, people trying to breath and get enough oxygen is simply awful
to watch and clearly very frightening to the person trying to get air.
By Friday afternoon things had settled a bit but we were all
still on high alert. Matt and Erin had come down to be with Marty and stand
with me. I sat with Marty, holding her
hand, listened and watched as the kids talked to her and showed her videos of
their kids. Marty watched, paid
attention, knew who was in the room but was clearly weak and the docs were not
wanting her to eat or drink for fear of further aspiration.
I watched her seem to sink further into the bed. You see people laying on a bed, sort of on
top of the mattress, resting. Marty was
a part of the bed, enveloped in the mattress unable to really pull herself up.
Matt spent the night with Marty Friday into Saturday, and
she had another respiratory crisis about 4 a.m.
With help from a respiratory tech the crisis was averted again. Saturday was a hard day waiting for doctors
wondering where all of this was going.
Sunday morning brought the same early morning respiratory crises. She simply did not have the strength to clear
the secretions and use her lungs enough to be comfortable and meet the minimum oxygen
needs of a body. That afternoon the respiratory
guru of Waco came in, looked, listened and stood there quietly.
I asked Dr. Ritchey what was next, what was the next thing
we needed to try and do. He looked at
me, looked at Matt and said very simply and kindly, “I don’t think she is going
to get better.”
I looked at him and said, “I broke my word to her once, I
won’t do it again, we can’t intubate.”
He said it made sense to bring in hospice. They were there that evening with me, Marty,
Matt and Erin. It was really the first
and last time Marty seemed to pay attention.
Monday morning it seemed as if we wouldn’t get to hospice,
that Marty wouldn’t make it to that transition point. The good Dr. Ritchey gave one last order, for
morphine, before the hospice doc took over Marty’s care.
As the nurse was about to administer the morphine I asked
her to wait for just a second while I whispered to Marty one last time, “I love
you, you have been a hero and you go whenever you are ready, we will be with
you always.”
The nurse, a wonderful example of care and compassion, gave
Marty the morphine and she relaxed a It was clear our journey was
going to end soon.
little for the first time in 48
hours.
It is incredibly hard to make the shift from fighting beside
your wife for every extra minute of existence.
For 14 years Marty and I had been in pitched battle with frailty,
infection, disease and death. We had
been together in multiple hospitals with multiple doctors doing multiple
procedures to give us one more day, one more week, one more year. I, with my children, had now made the
decision to quit the fight and let her broken body run its course.
It felt like a monumental defeat, it felt like giving up on
a life’s work, it felt like I was letting her down and quitting on her. I know none of that is true, but it’s true
that’s how it feels.
Marty spent Monday holding hands with me, Matt, Erin, LaShonda,
Sue and other friends. Old and current
preachers came by to whisper in her ear and touch her hand. There were tears and some laughter as people came
and paid respects to this rather amazing woman and her family.
I thought she would make it to Tuesday when my parents were
going to come down and see her one last time.
Her heart and lungs stopped at the same time, 6:50 a.m. on Tuesday, May
7, 2019 at Providence Hospital. Nykkie, her
long-time caregiver and sister wife held her as she breathed her last, once
again she was never alone.
When I spoke my last words to Marty before the morphine, she
knew what was coming and somehow, I think she knew it was time for her to leave. I think the part of her that made her
uniquely human, uniquely Marty, that soul, that electrical aura, left Sunday
morning. I think she was out of that
broken body and watched as her friends and family came, cried and laughed and
prayed for her. I think we were all
simply letting the earthly body run its course, and it did.
Marty and I talked of death a lot. It happens when you have come close so many
times. I used to tell her she was my
forever obligation because I had saved her life on three or four occasions by
calling the right people. She accepted
that.
She once told me when I asked her if she was afraid of dying
that sure she was but that really death of just another way of being.
I believe her.
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