About my son - may trigger
 

Waves told me she wrote about my son here and I read her post. I haven't read others because I wanted to be a little more accurate, though Waves got most of it right and certainly her heart was in the right place.

My son died on October 29th. I still can't really say or write that. It is very painful for me and I still can't believe it really - denial is a balm.

His medications were not done right by his psychiatrist. My son and I were trying to titrate on the clozaril because he had missed about a week to ten days. The website says to titrate - go back on slowly - she (the psychiatrist) said that was not necessary. He had actually been off ten days and she - who was in another state and did not look at his chart - said he had been off two days. And get off the phone and do what I say because I am going on vacation tonight.

He and I started him on the clozaril slowler than she said - but not as slowly as the pharm site said. He couldn't go into a new program because she wouldn't change her mind or look at his chart to see he and I were right.

He died in my small apartment. Just me and him. He was having problems with wheezing and he was sleepwalking. I was going to take him to the hospital the next day. I got him in bed and he died. He was 29. I am crazy with guilt and anger and pain and love. It wasn't my fault but it is hard to not feel it was my fault.

His brother and sister came a few days later - they live far away.

I am having a small memorial service on Sunday and have no family in the area. His ashes will be scattered in the spring.

He was my life - I devoted myself to him for the past 25 years. The coroner has not determined a cause of death and it may remain so - probably his heart and the Clozaril does cause deaths by myocarditis. Slides have been sent to a cardiac pathologist. May know in a few weeks, may not.

I have missed people here but work now full time and this is more than full time. I just want him back.

Sometimes I feel some peace. In therapy and may go to a bereavement group in January.

Take care all of you,

I love you and I miss you. Hold on. I am here.

Karolina: :grouphug:

I know how bad guilt can make us feel. I divorced my husband this past July and he passed about 3 weeks ago. Somehow the guilt has to be let go or else it can ruin us. Know in your heart that your son does not want you to be going through this. I know it is easier said than done and I do offer you my condolences. It is something no parent should have to go through. I truely feel for you.

befuddled2

(((((((((((Karolina)))))))))))))))))))


Nikko:grouphug::hug:

I can feel your anguish
 

I am so sorry and can so relate to every emotion you feel.
The same thing happened to my daughter with poor medical/medication care, wrong dose, and given SSRI she had documented seisures from.
She died in our home during her sleep, I had given her the meds, did not know the new ones were SSRI many of them, and the full dose of Duregesic patch when she had not had any for a week.She also was 29.
I am consumed with gried and guilt.

There are no answeres, no way to lessen the heart aching, and missing of someone that was a huge piece of your life. Takeing care of my daughter and advocating her care was a full time job. Tough with her being bipolar, disabled with nerve damage also, and in crisis at the time she passes....Lack of health system caring, and treat them and street them attitude.
I have three complaints from her stay there, and now I blame them for her death,

One day after she came home with the ten meds I felt so confused about but they reassured me!
I cry with with, I send you hugs, and my love.
I am so deeply sorry someone else is lost from the lousy system and makes me all the more determined to go after those involved in her treatment.
Dianne

Sending hugs.

Donna

I am so sorry for your loss...your son.
and for you di about your daughter.
Hugs to you both...
I have no words to offer just a shoulder to cry on.
(((((HUGS)))))
bizi:(

Karolina
 

Hi Karolina,

glad you made it here. Welcome.

sorry for the inaccuracies ... it was based on our IM conversation so i'm not surprised i got some things wrong in my post/thread :rolleyes:

but

please DO read the responses - they are heartfelt messages for YOU.

i hope you are ok today. sorry i konked out before checking back in mail and re-sending links but i guess you saved the one from IM... in any case you made it ;) i was really out of it last night between migraine and meds. :o

I'm glad you are here. :hug:

love

~ waves ~

Dear Karolina,

This is very sad.
Juan had a great mother.

M.

pain beyond words...

this sounds good. i am glad you are taking care of yourself and staying connected in these ways.

Of this, I am soooo happy, and very relieved. I hope you feel it more and more often.

:hug:

~ waves ~

the waiting is so hard
 

still nothing from the cardiac pathologist - and he was at the therapeutic level of clozapine - .89 (1.0 is toxic)

I still struggle with guilt - if I had taken him to the er then he might have lived. He didn't want to go to the er, but I could have called 911 while he was sleepwalking and coughing/wheezing - but that felt wrong too because I wanted to have him be choosing his life. I did not think he would die that night. But it seemed serious and I was caught between what to do and what not to do. I had also taken my meds which included trazadone and that made me fuzzy. And I was so tired and confused.

But he was with me and I take the blame. Although something had been happening for several days and he had kept refusing to go to the hospital.

But if I had been sharper........... (then never mind calling his doctor and describing the symptoms and her making light of them). But that was a few days before he got sicker. I was going to take him the next day. Only I didn't get to.

Looking back he looked sick and I should have talked him into it. He was not hard to talk to

But he had run off to Boston for a few days and I had been so scared so I though he will be nice to me and then do something.

I think this is such torture. the guilt and then the loss the loneliness the missing the unfairness to him to his life he could be leading.

so hard

Dear Karolina


Grief is the hardest emotion to overcome... because there is no time-frame.

God/humanity give you the strength to get through this traumatic time.

:hug::hug::hug::hug::hug:David:hug::hug::hug::hug:

Di Marie
 

{{{{{{:hug::hug::hug::hug::hug}}}}}}}}}}

i'm so sorry for your loss


David:hug::hug::hug::hug:

My Girlfriend Died following surgery that I urged her to have
 

Dear karolina,

I only just noticed your post today. You have my commiserations. More than that, I identify with everything that you are feeling.

My girlfriend died on October 27 following surgery that I urged her to get that was not supposed to be life-threatening.

I won't go into it, but there are so may of my decisions that I question. Would the outcome have been different if I had chosen/not chosen to do this or that? I feel an overwhelming sense of guilt that I realize cognitively is not justified but that knowledge doesn't help emotionally.

Nothing will help but the passage of time. Lean on everyone around you who can give you help.

It will get better. I know that, and that is what everyone tells me. I believe it, but that doesn't make anything better now.

Dear Karolina, Di, and Highhatsize
 

I am so sorry that you all have these sorrows to your hearts.
it is obvious that You loved them very much.
Know that we care...
write, vent, post whatever, whenever....
I am so sorry.
bizi

thanks all
 

so this will be another weekend of not knowing, and then maybe yet another week of not knowing and maybe the finding will be inconclusive

so I did think that next time I talk to the coroner, maybe I can ask him if it looks like I could have done something -

though even if the guilt is relieved to an extent, the missing will not be and will never be

I can understand all too well HighHat - I made a series of decisions too which I regret terribly

each day a battle to live with them mixed into the loss

Karolina

my dear
 

I'm glad you are here, and able to share with us. I hope there is some small relief in doing so for you.

I know some wounds scar and those scars remain tho perhaps less painful.

I think of you daily and send you warm vibes

I think that is great about discussing with the Coroner... my guess is you will find some relief in that, from what i know of the circumstances so far.

((( Karolina )))

~ waves ~

yes, Karolina....
 

Getting answers is very important to grief.

This situation for you really needs some answers. Often in medical disasters, there are several, or many circumstances that come together, to lead to
a death or injury. When this happens, the "blame" is really complex, and hard to pin point. (sometimes there is no "blame" that can be appointed).

I think you will find with time, that you recall all the positive and constructive things you provided for Juan. Those should not be forgotten, during the acute phase of this grief.

When I was young, my family situation was a mess. I won't go into it now, but to say, that I could not help my mother. But I make up for it now, by extending myself to others, that I have learned how to help. So sometimes the timing is not quite right, but that is not to say, you cannot become a support for someone else when they need it in the future.

I see you using your strengths well, so far. :hug:

Love you dear. I am sorry the coroner hasn't been able to come to a conclusion yet. I am glad he is being thurough and searching for the answer.

But yes, sometimes, the answer is not going to come. I hope for one, though.

Guilt and fear a major players in grief. The trick is going to be finding their place on your road to healing. One thing at a time. Let yourself feel these powerful emotions and give them a home in your heart and in your head, then move to the next emotion/hurdle. This process is going to be consuming, long and painful.

But there will also be days where your love for Juan is more powerful. So much so, you will be able to feel him. And there is much joy and comfort in that feeling.

Stay with us. Let us hear you.

I am right here.