It was Friday Evening October 19 2007 that my wife of 47 years came home for the last time.
About four years ago she was diagnosed with pulmonary fibrosis, a terminal illness of the lungs. When she
was first diagnosed I looked it up on the Internet and learned of the horror of this disease as it would
progress to her final breath. I found that in most cases death was four or five years away from the date of
diagnosis. I did not tell my wife this immediately. As the disease progressed more my heart would sink
and I would cry to myself. She knew she was getting worse when each time we would have to turn the
oxygen liters up another notch. She knew that there was no cure and that her lungs were getting worse.
She was in the care of Pulmonologist, Dr Leonard Glade. We had great faith in this good doctor and he
had done all he could for her.
Approximately two and a half months before her demise she had taken a bad fall in the laundry room. She
was reaching up to grab a blouse that was hanging above the dryer. She fell backwards and landed on a
chain saw and a metal tool box that was sitting on the cement floor. She could not get up by herself. I
grabbed her around the waist and pulled her up. It was not easy as I was getting chest pains as I was
pulling her up, probably because of my congestive heart failure.. I managed to get her up and once I got
her stable I placed a nitro tablet under my tongue and then walked her back to her bed. I told her I wanted
to call 911 and get her to the emergency room. She said no she did not feel she had to go.
She was still able to walk and we went to her doctors office a few days later. He examined her bruises
and what else transpired you will have to ask her primary physician, Dr Arnold Lupin.
She had a breathing episode in bed one day. The first of many episodes where she could not catch her
breath and was scared to death, saying "Tony, Help me, I'm dying?" The first episode was so traumatic, I
thought I would die with her. She later told me that just before the attack she felt something warm hit in her
chest with a stinging sensation. She could not catch her breath. She asked for a xanax. I gave her one.
She still could not catch her breath. She asked for another. I gave her another. All the while I was
screaming to God to help her. She prayed fervently. "Help me God. Help me God." Her attack ended
and we cried together. I thought for sure she was going to die. I called her Doctor and he advised me to
get her to the ER where he could see her. She did not want to go to the ER. I think this was the time I
called 911 and she refused to go when they arrived and they would not take her against her will. It was at
this point that she could not take more than two or three steps without having a breathing episode.
After a few lesser episodes over a day or two, I convinced her to go to the ER at Touro. I called A-med
ambulance for the trip. Doctor Glade met us at the ER and ordered a few tests. One of the tests showed
that a blood clot had hit her lungs. Medications were ordered. Later her heart Doctor inserted a "green
filter" in a vein to catch any other clots that might break loose. She was released about a week later and
came home in an A-med Ambulance. The physical therapist walked her around the nurses station before
her release.
I took care of her and will narrate this part if needed.
As she got worse I convinced her to go to the ER at EJ Hospital. She was in a more weakened condition
and would get episodes just laying in the bed. Any effort would drop her oxygen level desperately low and
her heart rate very high. I felt her life hung in a very delicate balance. I asked the doctor if he was putting
her in a critical care unit and he said yes. She stayed in this unit almost a week and a half until it was
decided that she was well enough to be in a regular room (552)on the 5th floor. I was apprehensive but
glad, because I could stay with her all night and day. She was getting progressively worse. The Doctor
said there was no more he could do for her. I asked him if I could take her home as a hospice patient. He
agreed.
My wife had been begging to go home. I asked her if I could order her a hospital bed and she refused.
She said, "I want to be in my bed". After a week in CCU and a week in room 552, I acquiesced to her
wish. I chose River Region Hospice and talked with their nurse and signed several papers for her. Earlier
she had signed a "do not resuscitate, do not incubate order". This was her voluntary wish. She did not
want to be on a machine or resuscitated. She had read and heard about the many horrors others went
through with this and we had discussed this often over the years.
The River Regions Hospice Nurse, told me to go home ahead of her to let the oxygen company in to set
up the oxygen machines. The oxygen delivery was there when I arrived. I let him (Horace) in and he
brought in a 10 liter and a 5 liter machine which he hooked up together. I told him to place them in the utility
room, because of the noise and heat they generated. It was 36' to where she would be using them. He
connected a 50 foot line and said that this might not work with a re-breather mask. He hooked it up and
the bag on the re-breather inflated. I assumed, relying on his judgement, that it was working. He left it
hooked up and running anticipating my wifes needs for when she arrived. It was discussed and
understood that I would place the mask on her face when the ambulance people removed their oxygen and
she would get the proper amount of oxygen to sustain life.
Soon after the pharmacy came and delivered the hospice ordered drugs. I signed for them and she drove
off.
I assumed the Hospice nurse would arrive next or at least with the ambulance, to supervise and make sure
she was settled in and stable. This assumption was not to be realized.
The ambulance arrived. As they rolled the gurney up the drive way she smiled at me. I went up to her and
we kissed. We were so happy that she could be home and in her own bed. They rolled the gurney into the
bed room and place her in her bed. As soon as they removed their oxygen from her face I attached the
re-breather to her face. I told her I would be right back as I walked the ambulance people out of the
house. I heard a noise and I rushed back into her bedroom. She was gasping for breath. Her eyes were
fixed as in death. I stuck my finger into the mask to feel for oxygen flow. None. I pulled the hose apart and
felt the oxygen flowing out. I reconnected it. .No oxygen coming into the mask. I pulled the valve flap off
the inlet to let the oxygen flow in freely. It still did not flow.
I called 911 trying to get someone here who could get the oxygen working right.. I do not remember exactly
what I said. After I hung up I disconnected the line again and put the flowing end into her mouth and held
her nose shut so she would breathe through her mouth.
911 and Harahan Police Department was knocking on the door. I left her to answer the door and tried to
explain that I needed help with the oxygen. The 300+ pound man pushed me to the side as he rushed into
the bedroom. I saw the oxygen had fell from her mouth. I rushed to place it back in. He pushed me aside
and told me to leave the room. I told him "No" and went on again to try to tell him that she was a hospice
patient and had signed a no resuscitate no incubate order. He was not hearing it as he was screaming to
the Harahan Police, "Get him out of here."
The Harahan Police approached me and I told them that this was my house, I am my wifes care taker and
they had better not touch me. They backed off as I was asking them to get this wild man out of my house. I
again tried to explain that she was a hospice patient with signed orders covering this situation. He yelled
"Get the orders". They were in one of three bags I had hastily packed when I left the hospital. I could not
find them. I saw him place something on my wife and her body jerked. I could not see if he did it more
than once. I died inside as he said, "She is alive but only for a few minutes. It's your decision for her to
stay alive". He put the onus on me after I repeatedly had told his deaf ears about hospice and the signed
directive. He finally got that through his head and walked away. He had awakened my wife to this great
suffering and damaged lungs only to suffer more. I can not explain the unfathomable hurt I suffered for my
wife and for myself. I don't know how long she stayed alive but she was unattended and if she was
suffering maybe he should have given her something to relieve the pain. You would have to have been in
my place to feel the deep soulful hurt. I cannot but believe that if the hospice nurse had been here when
Terry, my wife arrived home, none of this would have happened.
Terry and I had been married for over 47 years and were very much in love.
We enjoyed each other. It was a very happy marriage.
To the best of my memory, this is a correct and true statement.
Leonard Jaeger
Husband of Terry Jaeger