Mike had a friend, Jim, who was a physician. I met Jim at the nursing home but he did not introduce himself as a doctor. Mike had mentioned to him that I was a massage therapist and that we were working on getting the swelling down on his feet. At the time, Mike's hands and feet were all swollen to probably twice their normal size and were opaque kind of like cooked fish. Jim met me out in the hallway and started asking me questions about Mike... specifically about how I was addressing the swelling. Remember.... I didn't know he was a doctor..... I explained to him what I had in mind and that without the list of his medications or much knowledge of preexisting conditions that I was using very light touch in the direction of the heart and seeing how he responded and would go from there. I could tell by how he was questioning me that he had a medical background. He would ask.... couldn't you just raise his arm and let the fluid drain .... the answer is no, btw.... but I explained to him why that would be too taxing on his heart. Again..... I didn't know he was a doctor! I found out later from Mike that Jim really like me and thought I was good for him.
Jim was someone Mike would want me to call when he was in the hospital. He couldn't always come by but he always called me and kept up on his condition. After Mike died, Jim had called me a few times but I ignored his call because talking to people was just too difficult. I finally sat down and wrote him this letter. He deserved an explanation. He called me after he read my letter and I will always remember the words of comfort he gave me. I am going to copy my letter to him here. Again, this is my story. My experiences. I can't seem to get the letter pasted where I want it to so you may need to scroll down to see it.
Hi Jim,
I
am sorry I keep missing your calls. It is in part because talking to
people who know and care about Mike is still challenging for me. I cry
too easily and then no one can understand what I am saying.
I am very glad for your calls, though.
Mike
hadn't been that sick this time. You are much more "medical" than the
people I usually talk to regarding Mike, so this might make it easier
for me to explain. You know first hand with your longstanding
relationship with Mike (longer than myself) what all he has dealt with
healthwise secondary to his ALS. We both know that the MRSA,
pseduomonis, serasia (sp?), proteus (sp?), c.diff....and a host of other
invaders have really threatened his health. They were always present
to some degree even when he was "healthy". It is also obvious that with
every severe infection, his chances of recovery are less. What I
didn't quite realize until this time is that the window that I have
between when he shows symptoms to when he would be considered critical
was also greatly shortened.
Friday he was fine. Friday night
he had a new night nurse and she didn't give him enough free water when
Mike had requested his tube feeding to be shut off. Saturday it was
only me in the house with all 3. Mike hadn't peed much but I figured
that was due to the nurse error during the night. Come noon he
complained of "colostomy pain". I changed his colostomy bag for 2 golf
ball sized stools. His vitals were good but his abdomen was tender to
palpation (he had asked for an abdomen massage with an essential oil
blend that we like). I assumed he was constipated and assured him that
he should feel better now that the stool had passed. Around 3pm his
temperature went up to 100.8 and the telltale white dot on his right
cheek showed up. He asked me to call for the squad and I did. Before
calling I went over his symptoms and his vitals and I told him that he
would be spending a long time in the ED with his current symptoms and
asked if he could wait until I could get a nurse for the girls so that I
could go with him. Strangely he said no. He NEVER wants to go....let
alone without me. When the EMT arrived they took their own vitals and
asked what his complaint was. His complaints didn't match his vitals or
any clinical observation. Without me riding with him to assume
responsibility for the ventilator, they would not take the vent. They
would only bag him and take him to the closes hospital which would have
been Dr. West. West can't handle his level of care and Mike didn't want
bagged. The EMT called for alternative transport since he wasn't
critical. They stayed roughly 40 minutes waiting for the transport to
show up before Mike told me to just cancel them. I called them and
cancelled and the EMT left.
A few hours after that Mike asked
me to use the ambu bag. I did, but again there didn't seem to be a huge
reason. His temperature had gone up to 101.8 but his BP, HR and O2
were good. I asked him if he needed to go to the hospital and he said
yes. I called the non urgent transport and they stopped taking
residential after 7pm. It was barely after that. I told Mike that I
could call for 911 again and maybe convince them to bag him to Mr.
Carmel (which would have been better for him). I called and they came.
The same guys came. I told him that non urgent wouldn't transport and
asked them if they could take him to Mr. Carmel. One of the guys took
pity on us and agreed to take him on his vent AND transport him to OSU.
That was a miracle. Mike went without me. I hate when he sees me
crying or worried, but this was the first time for him transporting
without me. I hated it.
My brother came to the house and I
made it up to the ED at OSU. His temp had continued to climb, it was
now 102. Mike was doing his repetitive jaw thrust that he does when he
is septic. He was still able to blink to communicate with me, but the
decline in his condition was scary. I had brought his computer with me
and when they had him up in the ICU I hooked him all up but needed to
come home for my kids. This was 2am. I was kissing on him and telling
him that I would be back up as soon as I could and that he had his
computer in front of him if he needed it. He kept looking at me and I
think saying no. I assumed it was his computer .... saying that he
didn't want to use it....but now I am afraid that he was saying no
because he wanted me to stay.
If I had stayed I think it would have saved his life.
I
made it back up at 10am and he was barely responsive. His temp was 104
and his BP was saying "not detected". The resident was in the room
along with his nurse. I did what I always do...."what have you done for
his temp....just tylenol? how long ago was that?....can we put him on a
cooling blanket and get some ibuprofen? and why is his BP not picking
up? the history isn't on display what was his last reading? will you
fix the cuff and take it again?...." Both the Resident and his nurse
were quickly annoyed with me and I got the typical..."he's fine, we are
just running some tests"..... I looked at the display again and said
"his temp is now 105.3 and his BP is still reading not detected. It
isn't the cuff, the cuff would normally read high if anything...can we
take a manual?" To the Resident I asked "he looks a lot worse than when
I left at 2am should I call his family?" She answered me no. Not but 5
minutes later he crashed.
The Resident and the nurse were
still in the room.....I believe either clueless or intentionally
neglegent when the crash team came in and started chest compressions.
They worked on him for over half an hour. They finally got him back
with a thready pulse, but I never got him back after that.
I
stayed and I read to him and I took care of him, but I knew he wasn't
really with me. The next day the neurologist was in because he was no
longer responsive. He told me that he didn't display any higher brain
function and minimal brain stem reflexes.
I knew that Mike
had wanted Robert and his friend to make end of life decisions. I
asked the hospital to set up a conference call with Robert and
the Attending. I hold/held Mike's Medical POA, but I also knew that
Robert and the rest have said all along that they will come after me
when Mike dies. So when Robert got the report from the attending I
asked Robert to allow us to put Mike on comfort care, he refused. I
deferred my POA status knowing that Ohio Law grants next of kin which
would be Robert. I would have NEVER given up if I didn't know that Mike
was already gone. Never.
Up until Mike's heart finally gave
out, Robert would never agree to comfort care. The hospital ethically
changed him to DNR, but with his ventilator dependency being his
baseline due to the ALS, it was brain death or heart failure that was
needed for him to be a peace. They did not concluded brain death
because the criteria had to be modified because of the vent so they
could only say that he had adequate blood flow. He was close to being
maxed out on the cardiac support meds.
Robert called for a
meeting and "allowed" me to be present. It was decided, once again
that if Mike were in the room he would want more information, more
tests, more effort. I was just sickened by it all. Mike would have not
needed any of that. He would
know, he would agree with me, he would know I would never give up on him
if there was any hope.
Because I gave up my POA, the
hospital was not required to tell me anything. I was afraid to even go
to the cafeteria. Eventually, I had to go home for my girls. I knew
his good friend Mary was going to be there that day. I got a call
from Father Dean on Saturday late afternoon telling me that if I could
get there it would need to be soon. My brother came over to take over
for my girls and Mike died an hour after I got there.
It was
horrible, Jim. When I left Friday evening he was cold and his fingers
were black. I had been watching his body decay while the decision
makers were still going about their own lives. The only comfort I was
able to gain was my belief that Mike was already gone.
I had
promised Mike years ago when he told me that living in the nursing home
he was always afraid of dying alone, that I would hold his hand until
his heart no longer had a beat. Thanks to Father Dean calling me, I was
able to keep my promise. There was people there.....Barb (family
representative) was a woman that Mike "hated" (as much as Mike could
ever hate anyone). She wrote him a letter after Valerie died telling
him that he would have to take the guilt of their severed relationship
to his grave. She was there.....Steve...his friend was there. Some
woman I had never seen before was there with her very young boy.
Again,
I was just glad that Mike was already gone. I uncovered his arm from
the warming blanket. His hand was black and blistered and seeping. I
held it. I held it for an hour until they shut off his ventilator then I
left the hospital.
It was important to me to keep my promise.
I was already feeling the guilt of leaving him that first night, of
giving up my POA status over fear of his family's threat to me. I just
needed to at least send him to a better place with as much love as I
could focus on giving him.
Mike's friends have been
supportive. I
thought I was going to have to plan and pay for things. Mike's Trust ended up paying for everything Robert asked for. I found
out through Facebook when his funeral was. His obituary made no mention
of me.....or of him having ALS.
I went to the funeral
expecting to just sit in the back. They had him cremated. I was hoping
to see him again...without his ventilator...for me, that would have
been the first time.
Mike's friends and family were very
gracious with giving me hugs and words of comfort and thanks. I didn't
even so much as look at Robert. My brother had taken me so that I
didn't have to concern myself with driving. I went to the burial too.
I
want to go back. By myself. It seemed so unreal at the time. There
was so much about losing him that was distracting me from the pain of
losing HIM, that I want to go back to the burial and ...I don't
know...talk to him?
Robert didn't want any of his things. I
was able to donate his bed and wheelchair to Heinzerling Memorial
Foundation. I do love that I get to keep some of his things. I had
them all boxed up while Robert was still here so that he could just take
them all. Mike's things were not what I wanted, I only wanted Mike.
But after hearing that no one wanted his things, I am very happy to
have them.
Most of the communication Mike and I had over the years has been written...emails, facebook.... I have been going
back and reading them.
I am trying to do the things that I had
bitched to him about no longer being able to do because of lack of good
nurses....like go for a walk, take the girls to the mall.....
I
am starting to think about who I am without him some. It hurts. I
hope he forgives me for not staying with him that first night. I know
he would, so I guess I need to just wait until I can forgive myself.
You
remember how it was at Riverside for him, we all know that the hospital
didn't follow protocol for treating sepsis for him. I think if I would
have stayed to hold them accountable he wouldn't have gone into cardiac
arrest. It would still have been a hard battle for him to recover, but
he died from that cardiac arrest. Not ALS.
Sorry for such a long email. Once I started talking about it, I just wanted to keep going.
Please stay in touch. I like remembering Mike through his friends.
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