“Help!  They’re going to kill my husband!”

My friend was shrieking into the phone at midnight, hysterical and barely
intelligible.

“Wait a minute, Janie,” I pleaded, “calm down and tell me what is going on.”

“They are going to murder him,” she sobbed, “his rotten kids.”

“Okay,” I said, “but just give me the facts, so I can help you.”

And she rattled off her sad and shocking story:

“Well, you know that Joe has been in the hospital for seven months, going downill
steadily with Lou Gehrig’s disease.  And it is nine thousand dollars a month for his care
in that place.  So when his insurance ran out last week, his children decided they didn’t
want their inheritance going to that hospital, and it is time to ‘pull the plug.’  They want
him dead, right now.”

“But, Janie,” I remonstrated, “you have a medical power of attorney, so they can’t
possibly do this.”

At that point the distraught woman broke down completely, hardly able to speak.

“But we were never married, just lived together for seventeen years; so they are
going to court in three days to overturn my right to keep him alive on the respirator!”

“Let me think about this and decide what to do, and call you back in a bit.”

“Okay.  You are my best friend, and I didn’t know who else to call.”

Janie’s wild crying started to subside as I gently murmured “Ciao,” ending the
conversation.

It had started six months before, when my husband became the roommate of
Janie’s spouse in the subacute hospital.  Her Joe had been a patient for about six weeks;
and although he had been afflicted with ALS (amyotrophic lateral sclerosis) at home for
a couple of years, Janie could no longer handle it when he was put on a respirator.  Also,
he was burdened with a tracheostomy, feeding tube, and Foley catheter; but he was of
sound mind and in good spirits, seemingly having accepted his situation with grace.

He could no longer speak, but pointed to letters on a board to describe his needs.
He watched news and religious shows on television; and  every day he was settled into a
wheelchair and rolled out into the garden to enjoy the California sunshine.

Joe had the most beautiful eyes I had ever seen, and a wonderful smile.

Although Janie could not drive, she came in twice a week by bus, and stayed for
most of the day.

My husband, on the other hand, was in much worse condition:  He was semi-
conscious most of the time, having suffered a severe brain hemorrhage; and was blind,
mute, and paralyzed on one side.  This wonderful person was kept alive also by a
respirator; and in addition, had a tracheostomy and an endotracheal feeding tube.

All these problems were due not to the hand of God, but the careless hand of a
surgeon; but most of the time, I was too tired to even think about it.

He was in that hospital for three months; and as it was almost sixty miles from
our home, I had moved into a nearby hotel for the duration, spending about twelve hours
of each difficult day in his room.  When Janie was not with us, I made certain that both
of our men were given the best of care.  If an emergency arose with either of the
patients, I ran to the nurses’ station for help.  I learned how to handle the feeding tubes
and respirators and trachs, to relieve the staff of some of the overwhelming chores.

One evening I noted that Joe wanted to watch the television, and the aide had
turned it on to his favorite station.  However, upon checking, I discovered that the picture
was facing the wall, and our hapless viewer was looking at the back of the cabinet!
Since there is little frivolity in such institutions, this caused a whole day of amusement
for everyone.

As my husband had been brought there (after three months in the Intensive Care
Unit of a large Medical Center) to determine if he could be weaned off the respirator,
I inquired of the specialists after a couple of weeks as to how it was progressing.  When
they informed me that it would be impossible, in their expert opinion, for him to ever
again breathe on his own, I requested permission to take him home.  They were all
flabbergasted.

“Nobody ever goes home on a respirator!  Home care is impossible without a
trained respiratory therapist in attendance 24/7.”

After a solemn meeting with all kinds of medical personnel, during which I gave
the speech of my life--pointing out that I had already taken care of my lover at home for
over three years--it was finally decided, with some trepidation, that I could start training;
and, if successful, eventually might be able to take my husband home with me.

First, I had to endure two weeks of intensive schooling from the respiratory staff,
with my patient as the guinea pig.  That was no problem, since I was with him and Joe
each day from morning until midnight.

Then, it was twelve hours of home training, along with a backup caregiver of
my choice.  One of my long-term aides agreed to come over to my house for the day,
fortunately, and also to return to work later if things worked out; so a technician
arrived with all his equipment and spent the day cramming us with knowledge.  After
that, having studied the two-inch-thick manual, we were required to pass a fifteen-page
test.  Fortunately, our endeavors were satisfactorily completed.

The final feat was for me to spend twenty-four hours at my husband’s bedside,
without sleep, handling his complete care without any help or advice, under the watchful
eyes of the nursing staff.  When this was done, tired but happy, I received the go-ahead
to take my darling home--a day of sunshine in a terrible time.

Then came the problem of the two-thousand-dollar ambulance bill.  Following a
week of pleading and phone calls, our HMO agreed to pay--the final hurdle!  All these
precautions took about a month, during which time I was in a constant state of anxiety.

On the day of discharge, Joe became agitated when he saw the paramedics
putting my husband on a Gurney.  He kept pointing back and forth between himself and
the doorway:  He wanted to go home, too!  But we knew that that could never happen.
Janie and I felt sad, knowing that he was doomed to die in that place of gloom.

The two of us stayed in touch afterward, and are good friends to this day.  She
sent me a note of gratitude for the care and love I had given her husband during our time
together.

As for my darling, he revived and actually smiled as we arrived in our little home,
having survived six months of torture.  He knew he was safe with the one he loved.  I had
purchased a double hospital bed so that we could spend our nights together; and that was
enough.

So when that terrified phone call came at midnight, a few months later, I was
determined that I would help Janie and Joe in any way that I could.

After mulling over the possibilities, I called her back and suggested several
options:  First, she could contact the ombudsman, whose number is posted in the lobby
of every medical institution.  Second, I told her to have a videotape made of her
husband’s wish to stay alive, which could be done by questioning him and having him
point to negative or positive answers on his board.  Third, I suggested that she hire an
attorney immediately, one that would be free to go to court on the specified date.

Before we ended the call, Janie said she felt a lot better.  And I offered to hire
a nurse for my husband for the court day and drive to her county as a witness.  She
offered to pay for the nurse; but as we were both in financial straits by that time, it was
finally agreed that we would split the cost if her lawyer felt that my presence would be
helpful.

I was just as dismayed as she over the ugly situation with Joe’s four children,
who were all in their forties.  That they wanted to kill their father for his money was
gruesome and inconceivable.

So Janie went to court a few days later with her lawyer, and called me, in tears,
with the outcome:  The judge refused to allow her or the ombudsman to testify, and did
not allow the video in evidence.  He took away all Janie’s legal rights, as she was not
married to the patient, and awarded them to the eldest child, the daughter.

This cruel person had already decided to end her dad’s life immediately, having
received the first bill for his care; and the judge stated that Joe could be taken off the
respirator and allowed to die within three days. Janie was in a pitiful state by that time,
and I could do nothing more except giveher my emotional support.  It was difficult to
believe that this could happen to anyone in this Country, in these times; but happen it
did:  At the appointed time, Joe was injected with drugs by the technician, the respirator
was turned off, and he died early the next day.

The worst part was that Joe was aware of what was going on, evidenced by his
trembling, wide-eyed terror.  And even more brutal was the fact that Janie was not
allowed to be with him except for the first three hours of their ordeal!

Although not present, I was in dismay and disbelief throughout this legal killing.
It was like waiting for clemency for an innocent prisoner on death row, and finally having
to face the bitter end.  To add to the chaos, the daughter ordered the body removed to an
unknown location, and Janie was not told where the services or funeral would be held.
She ended up in long-term depression, from which she has not recovered after five years
of grief.  My own sorrow over Joe--whom I knew wanted to live,  having come to terms
with his illness--was exacerbated by my inability to help my friends.

Later, there was a prolonged legal struggle over the inheritance, and the children
even gave Janie a hard time over his personal possessions.  Though she willingly handed
over everything Joe had owned that was in her house, all of which legally belonged to her,
they brought in a deputy and insisted on searching for more.  And my poor friend
ended up spending most of her savings on lawyers during the following year.  Finally,
she was awarded one-fifth of Joe’s life insurance policy--a small return for her years of
suffering.

Joe had requested to be laid to rest in the cemetery where his brother was, but
Janie was never able to have this accomplished.  And to this day, she does not know the
final resting place of her mate of seventeen years.

Despite the tough times ahead for my own husband and myself, I felt lucky.  As
is often said, I guess you can always find someone else who is worse off.

And Man’s inhumanity to Man goes on. . .
 
 

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