Lost Hope

It was the Sunday of Labour Day weekend last year.

That was the day that started with sunny hope I could get my father home, broken, but vigorous for 87, and ended with him on the path to him passing in the hospital from c. diff, two and a half months later, in what his oncologist called “a shitty way to die.”

Sundays were always quiet in the hospital.   Only an hour of group physical or occupational therapy.

Weekdays, there were at least three hours of individual therapy, and I was there for them, partnering my father on the mat table, in the standing frame, everywhere.

On beautiful days, though, I always tried to wheel him outside.  We would sit by the medical school entrance in the sun, watching the young medical students come and go, so young that they were not yet baby docs on the wards.

But weekends were slower.

We had turned the corner with him.  The stroke of last year seemed far away now, though his rapid recovery had seduced me into going back to the hospital where he got care, rather then the one where my mother was Rapid Responsed three times in two weeks in December.

That was a huge mistake.  They missed the break in his back by scrimping on the imaging.  And when he went to the rehab they suggested, no one saw the spinal involvement until much too late.

We had dealt with his broken back, dealt with rehab, even dealt with the news that he would be a paraplegic for the rest of his life.  I was training in the morning to disimpact his bowels, manually clearing his shit, and keep his Foley catheter as clean as possible.   I knew how to wash and dress him.

My mother was at home.

After her December hospitalization for fluid build up, where we got her out on Christmas eve, we had started the process with her in February.   Her chest x-ray had shown a mass, and after three months, mid-March to mid-June,  we finally got a diagnosis of lung cancer.  It was at a picnic just after that diagnosis that my father was unsupervised and when my sister brought him back, she told how he fell off the scooter, and that was the start of his final ordeals.

My life, since then in mid-June, had been bouncing between them.    A typical day was up early, make breakfast for my mother, leaving it for her, to the hospital until I helped my father eat dinner — the speech pathologist they brought in for dysphasia based on a diagnosis of aspiration pneumonia knew we were a team — then back to my mother for her supper and attention, inducing specialized TV I would have to find for her.  Days were very long.

We were a team, my father and I.  And Sunday was for trying to give him one more good day, always the challenge with an 87 year old guy, different than the other six days we spent together in the hospital.

I took him out that afternoon.  We looked at the car, with his slideboard, and he thought, for the first time, we might be able to do a transfer to get him into it.  Physical therapy meant I had to be close with him in very physical ways that went beyond making sure he had fresh peaches everyday.

And we went to the park, just down the hill.  A lovely park, designed by Frederic Law Olmstead.  We sat in the sun.  And I drowsed.

When I woke, I saw he was groggy.  And I knew something was wrong.

I pounded up that hill to the quiet hospital and got him back to his room.

The rehab nurses saw his blood oxygen levels were very low.  They tried what they could to get them back up.

A senior nurse saw what was going on and she called Code Blue, which engaged Rapid Response.  That’s when I first met staff I would come to know over the next few months.

By that evening he was on a respirator in the ICU.  He finally had that damn brace off.

And everything had changed.

Hope was gone.  From that point, it was all downhill, no matter how I tried and tried and tried and tried to get things to reverse direction.

The next two and a half months are a montage of struggle, but now struggle without hope.

He died on November 13.  And my mother didn’t want to live after that, so she died on December 13, his 88th birthday.

My parents Aspergers meant that I was their health care proxy for the last eight years of their lives, the one who made the decisions.

When I look back on what I did over the past decade, I can’t believe what I did.  And if you had have told me what I was going to do, I wouldn’t have believed I could do it.

It’s not just the parents, it’s all the negotiations, in the family and out.   I tried to keep my brother in the loop, and he would just speak in the voice of his wife, telling me that we weren’t being nice and respectful enough.  I tried to show my burnout to my sister, especially after my brother’s family dumped on me, and she just saw me trying to dump shit on her. I even was kicked out of a few eldercare support groups because my challenges were too much for the group.

A year ago today, things changed again.  And somehow, I survived.

Now, I just have to figure what the point is.