My Brother Died On December 9, 2009

[eldersister]

He used to call her his "elder sister"....that was his joking name for me....I am almost 4 years older. He died 3 short weeks before his 50th birthday.

My brother had cancer as a teenager. And before that, a bone disease. He had spent more time in children's hospital than in school, his 9th grade year, and then his 11th grade years. His cancer was in his chest, and in those days (1975) they used huge doses of chemo and radiation. They cured his cancer, he was cancer free for the resto of his life; but the radiation damage set him on a course for future problems. By 35 he had quad bypass, for the leathering of his arteries due to the raditaion damage, and at 45, had aortic valve replacement. With the valve replacement the doctors told us that he flat lined several times during the surgery, and in post op too. They told us that they could never "touch" his heart again, because it wouldn't take the insult.

He was doing great. He was my best friend, his lovely wife's deepest love, and has many friends, a sucessful business. We lost our mom to ovarian cancer in "02, but our 83 year old dad is still living. My brother had his wife had no children, but he doted on my 17 year old daughter. He was giving her driving lessons, and helping me to sort out life after a nasty divorce, where my ex is no longer seeing our daughter. He was my daughter's surrogate dad, and I appreciated his help.

In September he got the flu. He started coughing. I was camping with my daugher and a friend of hers. He called to tell us that he and his wife would not be joining us, because he thought he was getting sick. I urged him to go to the doctor, but stubbornly he waited three more days. When he went he was given antibiotics and told to rest. By the time we came home, three days later, he sounded really bad on the phone, and I urged my sister in law to take him to the hosptial. She did that afternoon. I arrived home, dirty and tired, unpacked the car, took a shower, called my sister in law, who said he was in the hospital on O-2, and IV antibiotics and doing well.

The phone rand that night at 3am -- the hospital was trying to keep a C-pap on his face and he was tearing it off. Could I come and calm him down. My sil and I met there. After trying to reason with a man with an O-2 reading of 70% I just let him rip the C-pap off and his O-2 fell to 49%. The hospital staff then intubated him.

The tests came back positive for H1N1, and he was treated for everything under the sun. Primarily ARDS. It was an 80 day roller coaster of doing better, doing worse. Finally he was doing better, and he was transferred still on a vent, and feeding tube to a acute respiratory hospital --- not the one that my sil and I wanted, because the insurance company didn't have a contract and wouldn't send him to the one we liked better. He was at this new hospital one day before going back into their ICU, a week later, I could see his skin turning yellow, he was in liver failure. But he held on. two weeks later, he stopped communicating with us. He was dying piece by piece and my sister in law in denial, refused to see it. I am a hosptial trained social worker, and I begged for certian tests, certian proceedures, but I was not his wife....and would it have made any difference anyway ? He finally died after 80 horrifying days of suffering.....

I feel like body parts have been torn from me, like I can't take a deep breath yet...It's only been just under a week, and I know that I'm doing ok, I'm just soooooo....lost and angry with no one to be angry at, and as the elder sister, I am everyone elses caregiver, everyone elses' rock. I needed somewhere to to release this, and here it is.

Thank you for listening.

eldersister.

[eldersister]

Well, my brother's birthday would have been tomorrow, December 21st. He would have been 50. His high school buddies are having a lunch today at a Marie Callendar's to celebrate his life, and to honor his birthday. They invited me and my daughter to be their guest. (his widow was invited, but she is out of town, spending a few days away....) I so want to go, but I am torn between wanting to go, and hearing all their silly stories about him, and not knowing if I'm ready to go there yet....sigh...

[MartyT]

Eldersister, I don't know whether you've decided to go, but if you do attend this lunch in your brother's honor, I hope it goes well for you. I hope, too, that you'll continue to think of this as a safe place to release your thoughts and feelings. Please know that you have our deepest sympathy for your loss, and we'll be thinking of you on your brother's birthday tomorrow.

[eldersister]

I did attend. There were about 10 of us, and some of the women brought their high school scrapbooks to share. There were pictures of my sweet brother at dances before his cancer, with tons of hair in 1975; and then pictures a year later of him wearing a dashing hat, and leaning on a golf club. Seems many of his friend back then didn't know how ill he had been back then...I haven't seen some of these folks in 30 years, but now have ween them twice in two weeks...at his funeral, and now. It was lovely to see how adored he was. Makes me cry. Makes me angry. Makes me wonder at the world we live in, where 'modern medicine' cannot cure disease, but can and has developed bombs of mass destruction. I re-read parts of "when bad things happen to good people" but it still isn't enough for me.

[eldersister]

Today would have been my brother's 50th birthday. And I'm angry and anguished all over again. Why couldn't he have gone quickly ? Why did he have to suffer for 3 months ? Yes, it was terrible to have to watch him struggle for 3 months, only to die, without family there, with doctors and nurses trying to revive him for a half an hour..... Why?! During most of his hospitalization he was aware, and would mouth to us how much he wanted to live, he would plead to us to ask his doctors for just a sip of water. "water, water" he would try to say, the tracheostomy not allowing him to really talk. Finally we were allowed to give him tiny tiny bits of ice. But then after he would rollercoaster down, nothing. He had no ability to move, he was like a limp fish, an intellegent head on a dead body. Heart beating, but dying an inch at a time. The agony of his suffering is overwhelming. People ask me how I watched him die like that, but the real question isn't about me, it is about him.

And as long as I'm venting; Why is it that after my mom died, I was in my folk's house, staying with my dad for a few days. I was walking in the hallway, and clearly smelled the scent of Devon Violet perfume. It was over poweringly strong, but when I stepped back to smell it again, it was gone. Dad saw the look on my face, and asked me if I had smelled the violet perfume too.....we searched the house, but there was no perfume there. It was a scent my mom wore when I was a child, or if someone had gone to England and brought her some back. It was so comforting to know she was there, affirming that there REALLY WAS something, somewhere, someplace for her to go, and she was there safely.

But with my brother, nothing. No dreams of him that are not horrifying, no signs. And he was so into that. He was always talking about life on different planes, life in a different dimension, the hereafter.... and I'm getting NOTHING.

It's his birthday, and I'm revisiting anger and crying all over again.

[pastmidnite]

Deepest sympathy--birthdays, holidays, etc. are so hard. Just when I think I am making some sort of peace I find that I am back in an angry place. I watched my grandpa suffer in the hospital and kept thinking--WE ARE IN A HOSPITAL THIS IS RIDICULOUS! In reading your posts I can feel that sense of helplessness that comes over you when you can't do anything and can't get anything done to change things. I hope that you find support here.

I tend to think that sometimes with signs that intense anguish, anger can get in the way of being open to the signals we are desperately searching for... you've been through a tremendously emotional trauma with your brothers prolonged illness. Words are hard to express this but I wish you a day of good memories of your brother soon.

[eldersister]

My sister in law went away for a week after my brother's funeral, with my urging. 2 lady friends of hers were going to a lovely resort, 8 hours away, and invited her to go. I told her it would be a good thing for her, even if it only meant crying in a different county....and in a year of having to do so many "firsts" -- the first holiday, the first going away with out him, the first....whatever, that this first could happen quickly and without having too much time to ruminate over it for her.

So she went. I told her I wouldn't call, but she could call me if she wanted to...she texted me twice to say she was having a good time. Now she is home, and I'm seeing her tomorrow. She told me today that she did much better than she expected, and that maybe all the monthes my brother was sick she mourned in her own way then....and I'm glad for her. Years ago I recall my brother saying that if he died, his wife would be sad for a bit, then pick up and move on-- that she would probably move out of state, sell their business, and just move on, that she doesn't "do" a whole lot of emotion....maybe he was right....

But, what do I tell her about me....that I can't stop crying every night ? That I'm finally down to about one crying jag a day; on good days ? That the supposed "rock" of the family, who solves everyone elses problems can't make it through the day without crying ?

It has been just two weeks since he died, and frankly, I think I'm doing fairly well. I'm a divorced mom of a teenager, whose ex isn't around. I'm back at work, I'm taking my kid to activities, I'm keeping the pets fed, the bills paid, and the house as clean as it ever was. The laundry is done, or at least at it's usual rate....I'm able to talk about my loss with aquaintances without bursting into tears; But I am so very sad, and a bit lost. I feel like the ground I stand on, my very foundation of who I am, who I was is shaken. And I'm crying all over again.