A community of peers created by the Soaring Spirits Loss Foundation
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Welcome to this group's coordinator, Wannabmartha!
Latest Activity: 2 hours ago
Here's a link to the Forum discussion with "positive" quotes, photos, links, etc.
My husband had always been very clear that he wanted NO ventilators, feeding tubes, or anything else. But he had a stroke followed by seizures. Standard of care for status epilepticus (a state of constant seizures or repeated seizures less than 5 minutes apart) is intubation/sedation. I did not know this until my local hospital waited 36 hours to declare him status and then did not intubate/sedate until I had spoken with his neurosurgeon at another hospital. They did a feeding tube down his throat WITHOUT ASKING MY PERMISSION but did not intubate until I screamed at them. Even his neurosurgeon told me that in his opinion Steve received substandard care at the NJ hospital, and doctors do not usually badmouth other practitioners.
I agreed to the intubation because it was his only chance for survival, and because his neurosurgeon (whom both Steve and I respected) felt he could come out of it if his brain had a chance to rest and quiet down. But when they lifted the sedation and tried to stop the AEDs, he had another stroke and more seizures.
My husband wanted active euthanasia from the minute he was diagnosed, and I have a recording of his voice from the doctor's office proving that it's true. We had to have our 16-year-old cat euthanized while he was on chemo, and he said "I wish someone could do for me what we could do for Jenny." This man, who could never remember to pay his Visa bill and could not deal with bureaucracy in any form (perhaps due to his brain disorder, who knows), managed to get himself to a lawyer and have a will, health care proxy, and advance directive drawn up. And still.....
Having to make these decisions -- intubate or not, trach/PEG or not, pull it all or not -- is the most terrible thing anyone has to do. I walk around like a functioning person most of the time, but that I had to make this decision follows me every single day. I no longer doubt that this is what my husband wanted, but I will never be the same again.
yes we do all walk a different path....Bill and I knew but never talked about it...I looked in his eyes and cried...and he asked me one day to try not to that it made it harder on him...he was in the hospital on Morphine when he passed...but I did wake him and tell him it was time..he was in too much pain and the I knew he loved me and I love him..and of course he passed within an hour...he kept calling my deceased daughter....and reaching out to her..I told him to take her hand..he passed on her birthday...he had been ill with cancer for over 3 years....we knew it had spread and nothing could be done....the last 3 months of his life I spent caring for him...crying..and screaming a lot...
I changes when he passed....but I have also changed maybe 3-4 times since then.....I'm not the same person I was a year after he passed...2 years or even 3 years..one day at a time is right.....and am leaning on God to direct my life...it has given me peace knowing I've asked him to take my life in His hands....
Hope is a strange thing at times.
Sometimes it feels like a foreign language! Living right in the moment helps me.
dave 55 all you can do is put one foot in front of the other and keep walking.... Gordy was same looked like fluid in his lungs as all the other cancer mets had gone.... but was not fluid... was diffuse type of cancer .... and he could no longer struggle to breath... it was so sad he was so strong all his life and fought so many other things and conquered them ... never thought this would beat him....
Hug all, Sue and I only agreed to the breathing machine because we thought it was only to let her lie flat so they could do a scan, all the fluid in her lungs wouldn't let her do that. It never occurred to me this was approaching the end, I'll never know if she thought the same. So when they got the results back, and told me there was nothing they could do, I couldn't breath, or talk or anything. As I wrote below, I was in shock from that point on until days or weeks after. We all walk a different path, and I know I can't help but replay it in my mind, wondering... But it's over now, and only the sadness and tears remain. I'm slowly picking up the pieces, I feel shattered, broken inside. Tears don't come easily, but the grief is there. My thoughts on whats next seem to be only that, thoughts, or discussions here. it's going to be a slow day by day I think now. Walks seem good, and tomorrow a first tentative step, walking with a group in the area. Hope is a strange thing at times.
Yes Gordy said NO NO machine and made decision as well, it was hell on me I 'd do anything to keep him around bu the was alert enough to say NO ... so they put him on morphine drop and he faded away... drifted off to sleep .... good for him bad for me so much for the radiation that was going to give me 6 mo or at least Christmas!
sad...I'm sorry ..it's all so raw for you ....I pray that God brings you His peace...for each day.....I'm just starting to fix little things that I feel I can..and it's almost 4 years...take your time...go at your own pace and always remember there are no rights and wrongs here...we are all different....
there is a lot of support here.....PEACE
david 1980 don't put that guilt o n yourself..... nothing more means nothing more and two weeks on a tube was it really worth it my guess is no... you made the right decisions the most loving thing you can do is to make your wishes known now... so nobody else has to go through that for you .... stop beating your self up coulda woulda shoulda is not healthy!
Sad, we all here feel the same way, my daughter and I were togather the other day and she only met my late mate a few times, and she misses him. She gave me a new granddaughter in July and I commented that Mark (my mate) my mate would have just taken her away and she would have to fight to get her back. Mark and I were togather for 15 years and each day I do feel that I am missing a part of me, there are days I don't think I can make it though and then I remember he said I would. Dave55 is right just take at your own pace and remember there is no time limit on our grief, don't let friends say "get over it" They don't know how to tell you how to feel. We all are on this horrid ride and no one wants to take, we all understand and we take this road not by choice but, by unhappy have to. Remember, take care of yourself foremost and the other items will fall into place. Hugs and prayers to you.
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