In Which My Son Drops A Bombshell

[debi.williams]

I am so sorry my friends. Just  turmoil here, but Max just dropped a bombshell. 

When he (Max)asked me and my husband's friends to leave the room( 'I want to speak to Daddy alone' )he told me tonight something he has never said before. To set the scene, at the Erasmus Hospital in Anderlecht, Brussels -

We all duly left Max spent about 10-15 minutes private time with his Daddy. We (my decision based on what I knew and saw and knew of my husband - then finally I said to Max do you agree? I could never make it his decision. He was 15 years old for goodness' sake) ) 'we' were about to turn off the machines and I went in search of water for the best part of 3 minutes. Then I came back to the place by the curtain and waited for Max to finish what he wanted to say to his Daddy in private.

Anyway, tonight, Max and I started a casual conversation. Nothing extraordinary, but if I have something to say about Daddy I won't shun it. Death cannot be a taboo and more importantly, Max can never feel feel we cannot talk. This is the baton he will pass to his own children. Nothing must be out of bounds. I said ' I think we made the only decision we could Max' (turning off machines) but concluded with 'I wish I could have made magic' to which he replied

"When the nurse came in she hugged me and said 'even if the neurosurgeons had operated your dad would be in a wheelchair without limb function.' (She said this to him in French- my son is bilingual-I am so sorry'WHAT?????) They told me that TWO neurosurgeons said they couldn't operate. They told me he was brain dead.. That they couldn't operate. That it was a 'catastrophic bleed at his brain stem'

This has set up within me horror. Did I give up too soon? Why didn't I fight harder? Why oh why oh why???? 

I am sorry. This is horror. I cannot quiz Max anymore, but now I must live with the possibility he could be alive? If I had insisted they operate? He would have done anything for me. I had aml already made plans for wiping his arse (sorry to be graphic) in fact I would have done ANYTHING for him to be here. Because he was my soul too. I am distraught xxxx

[Guest]

Oh Debi- this is the last thing you need right now.  My take on is the information was coming from a nurse.  I admire and respect nurses to the nth degree.  That being said I have found that nurses on occasion will speak out of turn as with Max.  They are not the doctor, they don't always have accurate information and the bottom line is she had no business having this conversation with a 15-year-old.  I have been dealing with the medical community for all of my adult life.  Nurses only see a part of the puzzle, granted they are the primary care in hospitals but all the same they do not diagnose, they only respond to orders.  It has come up before and will again but Debi you need to understand and fully grasp onto the fact that any decision you made was made out of unconditional love based on the best information you were given.  I would take the assessment of the two neurosurgeons over that of a nurse.  It has been 16 weeks for you.  You have come such a long way.  Those are the things you need to embrace.  

[debi.williams]

Brad thank you thank you thank you. Your words of support to a troubled soul mean everything. I had to be so careful this evening and say to Max 'Tell me EXACTLY' what she meant...

Brad I would have sacrificed EVERYTHING to have kept him with us.  That was the easy part. as I was standing on the doorstep waving  the ambulance into our cul-de-sac I had already told God to take any limb of mine he saw fit, but not to take him. I bargained on the basis of 'Keep him here and test me. I will do whatever it takes'.....

On the Saturday night, the Doctor looked me in the face and said that  2 neurosurgeons wouldn't operate . His bleed was that bad. I wasn't really functioning myself then. When I went to see him (never told anyone this, I just wanted to pitch him out of that bed into a wheelchair and make a dash for the exit - imagining always in my weird thinking then that I could save him that love was enough I am weeping as I write.

The nurses in my mind were kind and great. BUT I have always had feeling of 'what would HE have done " (if it were me'?)

I looked Max in the face and asked him. In true 16yesr old style he said 'It is a pointless question because it didn't happen'c aka HE "DADDY° would have kept you alive no matter what.

This is hell xxx

[Guest]

Yes Debi, you would have and you did everything humanly possible to keep your wonderful husband with you.  You also did the most compassionate, and loving act by allowing him to leave and that my dear friend is the hardest thing anyone of us will ever face.  And I can promise you this: if the roles were reversed then your husband, because of his devotion to you, would have done exactly the same thing.  The decision was based out of unconditional love based on the best information you had.  

Max will have issues.  He's a teenager.  Teenagers are the reason boarding schools and military academies were invented.  This is the way he will grieve for a while.  It won't be the last time he sets your head spinning but over time he will grow to fully understand how horrible the decision was and that it was made from that unconditional love you two shared. As he grows into the kind and compassionate man his Daddy modeled for him, he will see.

Hang in there girl.  This has to be so hard for you.

[KarenK]

Debi,

I know your heart must be breaking once again. Do not take Max's statement to heart. He is a hurting young man who has lost his hero.

For any of us who have had to make the decision to remove the life support, there will always be the guilt and the what if's. Despite 5 specialists that said there was no more that could be done for Ron, it was very hard to make that decision. Also, consider this. There is alive and there is ALIVE. Sure Ron might have lived another few weeks in a nursing home, but not a life he would have wanted. Hooked to a vent, heart powered by a pacemaker, no digestion, no kidney function, semi conscious. He was a big, strong outdoorsman and would have hated every minute of this horrible existence. I'm sure your husband would have felt the same way. So, I have to think I made the right decision, as you do. I know it still hurts.

[debi.williams]

Thank you a million times over Brad. When I read your first sentence I turned my head away from the screen and wept.  You get my grief you totally do.

It was never in our love contract I would have to play the role of 'God' We had talked about so many things, him and I  I but never that. Brad you are right,, few things are worse.

I have this awful feeling that had it been me, he would have kept alive at any cost. I Think Max would have eventually intervened,  I spoke with the doctor, I spoke with the nurses. I wanted him, you see, so much  so very much, and I needed him.

They - nurses - got the love. When about 12-15 friends gathered around his bedside also asking questions.

Max is wonderful and I know he is the best of us. Why he didn't  tell me what took place, Only he knows. BUT there is no anger with  him conversation ...when he said ' He said 'Daddy would have hated being in a wheelchair with no use of his limbs"to I which I wanted to respond 'Yes BUT WE would be able to be with him.

To Max - Well what would you have done?

Max - The same mom,but why didn't you ask more questions 

Therein is my hell xx

[scba]

Dear Debi, I echo what everybody said, I wish I could type more but my wrists are swollen and the doctor told me to stay away from the PC for a couple of days. I send you a big hug

[Gwenivere]

Debi, I don't know what else I could add to all the caring and wisdom about information from a doctor or from a nurse.  I would definitely not take a nurses diagnosis over the physician.  As this was the big decision, I believe you listened to the right people.  Doctors want to save people.   It's in their oath.  There was no reason to mislead you.  Well intentioned as this nurse might have been (which I am having a hard time seeing telling a teenager what she did), I feel she was wrong as your son was dealing with so much no child should have to so soon.  I know you can't un hear it now.  That will be the hard thing added to your already painful grief.  You loved Max.  You would have done anything for him.  Maybe take some time and reaffirm that for yourself?  You don't need to be dragging a doubt like a heavy rock.  I hope you can free yourself from that and leave it on the side of the road.  It's a hard enough road as it is.

[Guest]

Debi - We have talked from time to time about the distance between the head and the heart.  Sadly when confronted with such a tragedy as you found yourself in there really isn't a way to bring the head and the heart together into alignment with each other.  Hence we are left to try to find peace when the two, the head and heart are so diametrically opposed to each other.  

"I have this awful feeling that had it been me, he would have kept alive at any cost.....I wanted him, you see, so much  so very much, and I needed him."  This your heart speaking, not speaking but crying out, for what you have lost.  You still want and need your husband just as much as I weep daily for the loss of Deedo.  We will always have those doubts that arise in the heart.  The head knows but the heart feels.  Your husband suffered a significant trauma.  It was bad enough that two neurosurgeons would not operate.  It was bad enough that you had already lost your husband before any decisions were made.  That is the head.  The heart feels the loneliness, the desolation, the pain, the shock of facing what we all are facing.

My sister was faced with a very similar situation eleven and a half years ago.  Her husband stroked out and she needed to say goodbye.  To this day she will have days when she doubts herself and yet she knew then and knows now what her husband wanted.  He did not want to live in a vegetative state.  But still the heart feels and creates doubt.

Debi - I hope you can find peace.  I hope you know you made the decisions that needed to be made.  You made them from love and they were informed decisions. Try your best to give your heart a reprieve.  

 

[Margm]

Debi, I tried writing last night.  I just had to delete what I wrote.  What could I say that hadn't been said.  Yesterday, my son took his girlfriend to the cardiac clinic of the hospital my husband was in last.  They had kept him in the ER, sitting in a corner, puking his guts out for 4-5 hours waiting.  I kept going up to the desk.  I kept telling them he needed in a room.  Who the heck was I?  I was just his wife.  At one point I went up to them and told them he was getting comatose.  He had been diagnosed as CA of colon.  That was done in the major hospital of the state that kept us prisoner.  Yes, I wrote them how the staff surgeon had told us we would not be accepted at another hospital, we had a workup in progress.  They prepped him three days for a colonoscopy.  He was in misery having female nurses give him enemas in his room, giving him chemicals to make him having BM's to try to clean him out.  He was so exhausted.  We had Blue Cross/Blue Shield insurance and Medicare.  Yet the staff surgeon said no other hospital would take us.  (Our hematologist at the cancer center, where he received only two treatments, he had said that was really not quite true.  I felt we were prisoners.  I wrote this hospital that did so much to advance his weakness.  Yes, he had a disease that was going to take his life eventually.  The night  in question we were in the ER of one of the hospitals that I had retired from.  I did get him out of the big hospital.  His cancer treatment  would be the same anywhere we went.  This night though, those 4-5 hours without receiving the boluses of saline to save his life hastened his death.  I could possibly have kept him "months" like one of the surgeons had given as a prognosis at the big hospital.  He was in pain (they let me give him his own pain medicine and from the wheelchair he slept on my shoulder.  Finally, after 4-5 hours they started a bolus of ice saline.  He shivered with chills.  Still, I did not know the end was minutes away, I thought months.  I was angry with him when he turned those beautiful hands up to me in surrender.  I should have been holding him instead of angry because he was giving up.  He could not fight anymore..  Now, over a month later, I see that.  He had thrown up so much, no food in his stomach for days, no liquids except the saline boluses he had had Monday and Tuesday of that week at the cancer center.  No chemo, just the saline.  Chemo should have been the week after he passed away.  I think his heart, his strong heart gave way on him from the workups that had been done.  Possibly the throwing up of his guts, nothing in  his stomach for days, possibly it ruptured the aneurysm they had found in the back of his brain only a month before.  Whatever the reason, whatever the death certificate said, whatever anger I expressed with him for giving up (and what wife expresses anger at a frail husband that she wanted a miracle to save?)  I can blame myself.  The outcome would have been the same.  I could not save him.  The miracles I had been granted were not to be for him, the most important person who had helped save me twice.  

The cardiac clinic of this  hospital had made a woman about my age stand up at the door, they had called her to the door, no one would open it for her and she could not get in.  She stood at that door for probably 10 minutes.  My son saw this.  His anger spilled out.  He yelled at them to open the door.  What kind of hospital was this that made people wait until they died.  Yes, this hospital had hastened the death of his father just for the very thing of making patients wait so long needlessly.  He used a few choice words that for his sake, I am happy they did not call security..  He took his frustrations out on the establishment that had hastened his father's death.  He had his say.  The outcome would have been the same.  But, the fact that an ER will let a man expire in the ER from lack of help is unheard of.  No, it is heard of, it happens.  It just should not happen.  

I have typed patients who had an artery necessary to the liver cut during gallbladder surgery.  Simple gallbladder.  They had to replace the liver.  How can they do that when people are waiting for liver transplants, but this patient gets a new liver.  I don't know how long she actually lived and I often wonder if that head of surgery, the staff surgeon might not have taken the chief resident's own liver and replaced it. (Of course he did not do that, but I'll bet he wanted to.)  One time a blood pressure cuff stayed on in surgery, malfunctioned and the limb had no blood supply, the patient lost that limb.  In my 43 years I have typed so many mistakes that cost people their life.  My last report was a simple colonoscopy on a 48-year-old woman.  The gut was pierced.  The daughter that was there to take her mom home had to take her mom as deceased.  Hospitals are not infallible.  Humans run them.  My life was saved twice by humans that could not save Billy's, even for the few months he possibly had.  My son got to express his rage at the system that hastened his precious father's life.  

No matter how much we second guess ourselves we cannot bring them back.  I bathed Billy, I did wipe his behind.  He was my baby.  My mother's attitude was in the forefront.  His man's attitude was that he wanted none of this.  He did not want to be pushed in a wheelchair or bathed by his wife, or to lose any more of his dignity.  No matter what we did, or did not do, no matter what the nurses or doctors did, or did not do, the results are the same.  We become fellow travelers on this grief forum none of us wanted to join, but have had to, just to try to make sense of our endless suffering.  I am so sorry my friend, my feeling and very humanly loved friend.  

[kayc]

Debi,

I'm sorry, but the nurse spoke WAY OUT OF LINE!  Go back and talk to the neurosurgeons so your heart will be set at ease.  Sometimes we're faced with the most horrible decisions and we have to rely on what the professionals tell us to do, we must rely on their guidance.  If they are not trustworthy and honest, we are all doomed, but I believe the doctors know better than a nurse who apparently doesn't know her place and her boundaries.  It's why, when we have an ultrasound or X-ray, the technician isn't allowed to tell us what they see...THEY are trained to take the pictures, it's the doctors who are trained to interpret what they see.  

[Kpl48]

Everyone has said it all! My love and support goes out to you and Max. 

[KarenK]

Margaret,

I applaud your son. You and I have seen and experienced first hand the thoughtless acts of doctors. In 1998, a doctor ("accidentally",  I suppose) removed Ron's prostate, removing his manhood during a routine procedure. Then there was the one who crippled him by removing half his foot and last, but not least the ER nurse who forced a catheter(against Ron's instruction) managing to shut off the bladder opening. This required a surgery to repair, resulting in a longer delay to start cancer treatments. Did this last one make a difference in the length of his survival? I don't really know, but it put him through unnecessary suffering.

The coup de grace was the nearby hospital that housed him during the last month. He had turned septic, could barely speak or stand, yet they discharged him after 2 weeks saying that the sepsis was gone, but I was to continue the IV meds(just in case). That same night, I took him to a different hospital. Sepsis was still there, and despite all efforts, he aspirated, was put on life support and died. End of story.

My point of this rant is that the day following his death, I  took his many meds to that first hospital. I handed them off to ER and loudly told them that since they had killed him, they could dispose of the meds. They weren't happy, but then neither was I.

[Kpl48]

I'm so sorry many of you had to suffer through medical care and hospitalizations. I can't imagine that on top of the pain of losing your loved one. My pain is unbearable as it is. My husband was diagnosed with terminal lung cancer and given a year to live. We opted for hospice as various treatments held no hope for us. We decided to have a good last year together. 

We had a good last year. He only got sick during his last week, and only very sick his last two days. We had enough pain medicine to keep him comfortable or asleep. He was home with me the entire time. His daughter and his closest friends came to see him during those last two days. This was quite beautiful. We were surrounded by love and were not alone. 

Tomorrow my step daughter and the grandkids are coming for a visit. We are meeting at a local zoo because my little house is not toddler friendly. I think this visit is triggering today's deep heartache and tears. I miss Andre so much. Now I must live in a new world without him. I'm doing my best to go out almost everyday and to make many new friends. When I'm alone I just want to be with my husband, which isn't possible. So I cry and stay inside even on a beautiful day like today. 

It may sound odd, but my dog and you all give me comfort. I often read and reread your posts. We understand each other. I do have friends I can cry in front of, but I stop my all out grieving before I get out of control. I want to die and to be with Andre. I won't hurt myself and I would never leave my loving dog. Someday I will be with my husband again. It's all so painful. 

[Gwenivere]

4 hours ago, Kpl48 said:

It may sound odd, but my dog and you all give me comfort. I often read and reread your posts. We understand each other. I do have friends I can cry in front of, but I stop my all out grieving before I get out of control. I want to die and to be with Andre. I won't hurt myself and I would never leave my loving dog. Someday I will be with my husband again. It's all so painful. 

Reading this made me cry.  I know the feeling of having to maintain control in front of other people.  For whatever reason, it can make them uncomfortable, they think the passage if time has been pushed or they cannot relate.  One thing that keeps coming up in my counseling is that I, too, want more than anything to be with Steve.  So that of course would mean dying myself.  I can't do that and hope I never feel I can.  I have 2 dogs as well that live happy lives.  I wish I could share in that with them.  Right now I do everything for them, but even they cannot stop the pain.  Their gift is loving me despite my sadness.  I don't know what I would do without this place and everyone here.  It's hard when you live, breathe and eat grief.  It's hard to know so many others are suffering too.  But to now in the depths of night I am not the only one struggling to find reason sync meaning to live helps.  That sounds awful to say because it so saddens me that anyone is feeling this.  

[Guest]

10 minutes ago, Gwenivere said:

One thing that keeps coming up in my counseling is that I, too, want more than anything to be with Steve.  So that of course would mean dying myself.  I can't do that and hope I never feel I can. 

I believe most of us feel this way. I am not suicidal but at the same time if I felt I were having a heart attack I don't think I'd call 911. While I have people to live for right now I'm okay if I don't wake up tomorrow. 

[kevin]

What do you do when your CT or MRI shows a small aneurysm? The downside risks of an operation are an uncontrolled bleed out, loss of normal functions(walking  talking, cognitive decline)...and 24/7 care......once the patient is over70 its like Russian roulette . Meds keep the pressure down and the blood thin.....but if there is a stroke, there will be a bleed out.     The decision is live like there is no tomorrow and respect the quality of life the patient wishes.....There are no easy decisions when this happens.................This is why I have my Bad Days

[Margm]

When we were RVing, my cavalier attitude was, if death is following us, we will outrun it.  My son, a navy disabled veteran was shot in the leg..  The rangers found us in the Gila Wilderness, against all odds.  We were on the river, but in a campground off the beaten path.  We came home and coming out of the mountains, it took us 19 hours of straight driving through to find our son so packed with many blood transfusions from our friends that we did not recognize him in the ICU.  They had had to stop surgery and then later when stable they performed it and saved his life.  He had an attitude after that, that when it is your time, you will go.  Not me, we were going to outrun death.  I have been brought to my knees.  Indeed, when it is your time to go, you will go.  My imaginative magic life has flat lined.  All my miracles, all my magical life, looking for signs of Angels, those times of finding  them for myself, they are no more.  Maybe one day they will reappear just like the cardinal that just sat on my patio this cold morning and the crow cawing in one of the trees.  The wax around my brain and heart has not melted yet.  I hope it will in the future because this flat line existence is not living.  My widow friends give me hope.  Margaret, it has only been five weeks that he has been gone.  Now I have to find myself...........somewhere, somehow.  But, he is me, I am him.  We said that so many times. 

I will drive myself the 170 miles to my daughters on Wednesday. My son and his girlfriend will come later so that they do not have to babysit me for a few days.  My son is ever faithful to me, trying to protect me as he himself is grieving.  I will go over and see my mother, who has Alzheimer's and my sister.  I will see my granddaughter.  I will go the route that Billy and I always took, and I will cry.  I will miss him.  But, like he said, the one who is left must stay.  I have watched TV and I have laughed.  Laughter is good medicine.

[kayc]

To listen you all your stories, it breaks my heart for you and the spouses you lost.  I'm glad they no longer have to suffer, and wish there was some way we didn't have to.

Karen,

I don't think I've seen you share all that before, if you did, I missed it.  Wow!  That is too much for any one person, I am so sorry for all Ron suffered, and you along with him.  Our medical care system is very broken.  We have a hospital 60 miles from here that they built with grand architecture, big empty rooms and paintings.  But it's understaffed by 40+ nurses!  The parking means people have to walk a long ways to get where they're going, with no reception when you get inside to show you where to go.  It's insane!  And when you find someone to ask, way inside the building somewhere, they act irritated with you.  This is the place where I was over-anesthetized for my surgery, causing my heart to stop during surgery...afterwards, in recovery, I stopped breathing so many times it was beyond count.  But they lied to me when I questioned them and it wasn't until I was released and saw the bruising on my chest and demanded answers from them that they finally leveled with me.  Who wants a place like this in charge of their life!

Kevin, 

Is this your situation you are talking about?  I have to admire your attitude.  Amazing!

Margaret,

I hope you have a safe trip and the weather is good to you.  Enjoy your granddaughter and children!

Brad,

I understand.  I just want to live long enough to get my house paid off and outlive my pets.  Beyond that, it doesn't much matter to me, but I might change my mind of something changes.