Wednesday, October 22, 2008

An early morning post.
Its about 5.30am an as normal and wide eyed and bushy tailed - I can't seem to sleep past the first fingers of light no matter how late I go to bed. I don't mind this as its the most beautiful time of the day, apart from twilight... but sometimes I think it would be wonderful to just lie there asleep or able to enjoy hearing the world start its day. If I do stay in bed after I wake up my mind starts its work, stupid work energy draining work. All the expected things, the "what if's" and "how come" and "could I have changed things?". Sometimes it descends to waking nightmares and I just fling out of the room and get started - anything rather than let it have its head.
I am finding that the only place I feel at peace is out here away from society and that for me it is tiring to socialise. Don and I had become sort of hermits before he was killed, because it was easier and we were apart from needing a couple of hours nursing care we paid for, self sufficient. We didn't mind it just being us mainly with our daughters of course when they could be with us, and occasional family visitors, because as he became more frail socialising became harder. In the early days we tried, but most people's homes had steps or were too steep to get into. We'd get the odd invite and then it'd dry up, but one good friend stuck and still has.(
This first photo was taken about a year before Don began to have breathing probelms)
I am beginning to realise that I can't handle being with people, any people apart from the girls, for more than an hour or two. Its like my head is in one place still seeing the weeks of horrible stuff that was done to Don and the surface part of me is trying to block it out constantly and this is what is so tiring. I am more determined than ever to see the story of what the hospital did to Don published and I feel that this will be a part of some return to some normality (whatever that is supposed to be), but working steadily through the editing is strange, because it all just seems to be a stream of words and sentences and pages...and then it becomes real again, and I see every corner of the room, every face, Don's face - his eyes and I feel so lost, so absolutely wrecked inside my heart.
I won't be so miserable later on when the day starts. Its just the moment and I know what I am facing today as much as anyone can know - a few commitments - but even as I consider these things I can't get out of I am wishing for the day to end - this could be what depression is - I wouldn't really know because I have been lucky enough to only endure this for short times. When I am here by myself I don't feel like hiding away. I get outside and weed and walk about in the sun and feel quite positive. But I have someone staying here now, one of my favourite people but am finding it so hard keeping up the pretext of being "happy" and she doesn't seem to be able to handle my not being happy, so I have been working at pretending everything is a ok. That as many of you would know from experience is what's exhausting.

Before she arrived I had finished putting together some issues for investigation concerning the reasons Don was forcibly kept alive against his will for five weeks. Melissa, Alison and I have realised what was puzzling us about his time in the hospital is that it felt like research, like he was a lab rat so we put this together, and sent it to all the relevant authorities. I don't really expect a response, but at least they will know that we know exactly what they were doing and why - they may call this research but it was really "torture", something the Nuremberg Convention condemned after World War 2.
"Dear So and So,
First, I would like to know what was the cost of my husband’s time in ICU, from the morning of the 15th of April 2007 after his first Respiratory Arrest till his discharge on 17th May 2007, the day he died. I would like to know the bed day cost and the cost of all treatments such as daily X Rays/scans/ bloods, everything that has a cost applied to it. I am sure that administration at RNSH would require that records of this are kept as with any other Government department.

I had a retired Pathologist look at the hospital notes and he was very curious about the amount and frequency of blood taken from my husband considering his dangerously low Haemoglobin levels and the fact that he had to be given bags of blood although he was not bleeding internally.

There were days when he had more than a dozen lots of blood taken which had to be affecting his Haemoglobin levels which were down to the 70’s and 80’s much of the time even dropping to the 60’s. It didn’t seem to matter how low his levels were they continued to take an average of about 8 lots of blood for “Blood Gases” and “Metabolism” testing along with other lots for “Heamatology”. This then appeared to be “balanced” by giving my husband bags of blood. Around 12th May, I was present when they were obviously really worried about him this way and a doctor and nurse actually force squeezed two bags of blood into Don as if it was an emergency. One of them squeezing the bag while the other attended to the connection. They changed positions with the second bag. I have no idea why this was happening. They have written the time these bags were given as being hours apart, but they weren’t. I was there. I would say they were given within an hour of each other.

This didn’t stop them still taking many lots of blood from him per day.

I have shown people with medical training these notes and all were puzzled why blood was taken so many times a day. I would like RNSH doctors treating Don to explain this please. The Pathologist was also puzzled at the times of taking some of the bloods, having himself worked at some major public hospitals in his career.

Second, what I would like explained to me given that there are three different types of blood draws covered in the notes, for three different purposes, I would like to know on a daily basis how much actual blood was taken from my husband.

I know that to have such a low Haemoglobin level for such a period of time would have added to my husband’s suffering. I know at one time he was removed from their “NICE” study because he develloped Hypoglycemia. This research was foisted upon us on his first day in ICU. We were told taking part in this might ensure he would have a better chance of survival, all paid for by the research. That day we were both in a state of shock and took anything which might change things for the better.

What I would like to know here is why when he was obviously failing so badly did they continue to take the amount of blood they did from my husband?

Third, what part did research have in the extension of my husband’s life against his wishes for five dreadful weeks of useless suffering? Even in the early days in ICU Dr Delaney from ICU said in a family meeting as recorded by our youngest daughter Alison, “Then he asked us what Dad’s life was like at home and what he did with his time. He also asked if he would be able to live that life with a trachea in place or be on a ventilator and also had he spoken of his thoughts of being kept alive on a ventilator? Mum said they had actually spoken of it and he had said he hadn't wanted to be kept alive on one.”

The Intensive Care Specialist, Dr Anthony Delaney wrote early on in ICU Notes, “I suspect his Quadriplegia has left him with marginal respiratory reserve that has rendered him incapable of ventilating after his Pleurodesis.”

Don made it very clear that he wanted to be let die from day one in ICU. He didn’t bite through his own ventilation tubes for any other reason. One time he did it in front of my daughter and I and on the outgush of air he said “Help me”. We knew exactly what he meant and so did ICU.

If a Spinal Specialist had been involved he would have clearly been able to explain why a Quadriplegic was never going to survive the damage caused by the failed Pleurodesis which caused that first Respiratory Arrest and as Dr Delaney said, “rendered him incapable of ventilating…”

It has not been explained to us why Doctors in RNSH kept information from us about Don’s condition which we had to discover after his death from the notes. Their non disclosure of serious complications, right from day one was dangerously unprofessional and impacted on Don and my ability to make decisions.

The family can think of no other reason for Don’s life to be artificially extended, at such cost to him and also the hospital when the situation was so hopeless other than research, which plays a large part in major public hospitals financially and professionally.

If you can offer another answer to what we suspect was the case we would prefer to have that than what we have come to believe after understanding the Hospital notes.
I will now list the bloods taken, the time taken and his Haemoglobin levels at that time. When you see that what I have described is fact, I hope you can then ask the doctors involved why they acted as they did and for what purpose."

I haven't listed the bloods taken as that list is pages and pages long. All I can hope for is that somebody breaks ranks inside that tomb of a hospital and has some part of their soul still left in tact. The thought that I know now why Don was tortured as he was, and there were many many other things done over the 5 plus weeks which made him have levels of pain that are unimaginable, the thought that this was purposefully done to him, to such a frail man...
(This second photo was taken about two weeks before he was sent to hospital and its obvious how he was struggling - he was frail and should have been treated with kid gloves)
what difference is there between those doctors and the doctors Hitler used?
This is all heavy duty stuff to be still dealing with but I know that if I don't do this, I will not be able to live with myself, and living with myself knowing I had the courage and endurance and love to stick with it and follow through, not allowing my self to get sidetracked is what I am meant to be doing right here and right now.
(but the shocker was finding this photo of Don taken in the last week before hospital - when you look at the first one and see the difference - then to consider putting someone as sick and as weak as he was obviously to the eye, through the five weeks of extended suffering which was research is in my mind a criome against humanity. I had forgiotten about this photo and just finding it again recently shocked me anew)

Just sometimes the missing him is too much and the spirit gets a bit low... tomorrow will be a better day


FoxyMoron said...

Therese, be kind to yourself. There is no time frame with grief,where the time comes that you are "all better". I found that after losing Sarah, it was easier to go with the flow on bad days and just let the grieving happen. You do not "get over" losing a loved one, in time you learn to live with the grief somehow, and it becomes part of the fabric of your life. After 14 years I still have those raw moments, where the sobs come from deep within, from a pain so unimaginable that you dare not take it out to look at it.
I support your quest to find out what that hospital thought it was doing in their treatment of Don.
For me writing is therapy in a way. Keep us informed on the progress of your quest.

jin said...

Sending you big hugs Therese & lots of healing light.

Cazzie!!! said...

I have to agree, twilight is just lovely, and well, ought to change the name of my blog now I said that! LOL
I think of you often Therese, and I want you to know you have support... hard to fathom when we have not even met in person, but it is true.
Don was ever so lucky to have had you in his life, and he in yours too. Huggs :)

Mom said...

I'm sending big hugs around the world to reach you.
This wass painful to read. I know the pain you feel is intense. You lost a wonderful man and saw him suffer needlessly. You may one day learn to live with this loss, but you will never get over it. Just go with the flow and be easy on yourself.

Anne said...

You've gone through so much. I dealt with very traumatic deaths of both parents, but that can almost be expected (the deaths - not the trauma). So hard to deal with the passing of your soul mate and especially under such circumstances.

Writing I hope is theraputic for you, getting out those thoughts.

I can relate just a little how you are feeling, my sister's husband died aged 49 so I've "tried" to be there for her. By saying tried, I really have been there but so hard to know what to say, how to support etc.

Take care:-)

Ann O'Dyne said...

I say Amen to all above.

'no time-frame', and fling yourself into painting.
It will take you a while to learn to live just for yourself, since you've never been able to do that till now.
allow yourself some eccentricity!

JahTeh said...

You are still working your way through grief and part of grief is depression. Don't be happy just for a friend, tell her that you can't pretend but that it comes and goes. Annie O and I should be there with you to let you cry on our shoulders and then it would be our turn for the crying. Together we could break the drought.

Middle Child said...

Foxymoron - I hope I am never called upon to have the sort of grief which comes with losing a child... For me iots not the death so much, but the manner of it and the cruelty - I have deep trouble over this...writing is a therapy but it also gets the issues out and in this case aired as they need to be. Re your Sarah my thoughts are with you as well

Middle Child said...

JIn - thanks for the hugs...and all...

Cazzie - you're a good old (not so old) stick...and being a nurse you would know just how unacceptable RNSH's practices were - thanks

mom - thanks. Sorry it was hard to read - it wasn't hard to write it just poured out...

Middle Child said...

ann - re your sister's husband - she may want desparately to talk - well more to be heard an nauseum - she may want you to share looking at photos or in my case I desparately want to look at some funny old home videos with someone - my sister and no body wants to because they think they'll get upset... for me they are happy memories and I can and have watched them and felt uplifted - can't understand why its so hard for my sister to not be able to share this - ah well it takes all sorts to make a world as mum always said

Middle Child said...

ann o dyne - allw some eccentricity you say ahem! I think I have a fair smattering of that already , thanks re the painting will do.

Jahteh - thanks - it feels like there is an ocean of unshed tears inside and that I will cry forever and sometimes I wish I could have the luxury of doing this for days - but as with foxymoron above and with you there is one loss I think I would't survive so my hats off to the two of you...but then survival - there isn't really a choice - its just day by day

rosemary said...

therese: every time you write about don, your pain is palpable. hopefully, someday, you will have the justice you so deserve and that don was denied.

Eternally Curious said...

Oh MC! You keep writing. And painting, and weeding, and walking, and pursuing. But most of all, you keep those girls of yours close at all times. Be together, be a family. Talk. Look at photos. Remember. And fight together. Our situations are so different, yours and mine. But so similar too. But the one thing that cuts me deeper than anything is being sans family support thru all of it. If it wasn't for my friends and blogfriends, I'd give up the ghost for certain. So please, shut out people if you must. Without a doubt. But gather those you consider family tightly around you and hold them tenderly. Always.

MeHereNow said...

((big big hugs))

no words just lots of hugs from me to you

Sara said...

Weeding, I've found, is about some of the best therapy around. And sorry, but there's almost nothing more annoying than someone who insists you be happy, when you just want to grump a bit. You're entitled to grump all you please and don't you worry about your guest feeling put off.

Middle Child said...

rosemary - maybe I am just a big sook who knows?

Ec my thoughts are with you and I hope for you that you gets some ease soon

meherenow - why thank you

sara one problem with the weeding hereabouts lately sara is that nature has become a little too friendly and I have to do some aversion therapy for all the redbellied black snakes hereabouts and jumping ants...for which I seem to have begun a small allergic reaction - not good - weeding in winter is great.