18 days ago my brother bob died.
it was 18 days from diagnosis to death. it was 18 days of fear, pain and sadness. there were brief moments of hope, and frequent moments of despair.
in the very beginning the doctor's were optimistic that they could shrink the amount of cancer in his body. but it quickly became apparent after his first chemo treatment that something more was wrong. he steadily went downhill and on sunday he was brought the the hospital. they did a ct scan and had to tell him that the cancer had exploded inside his body and was everywhere.
just like when my mother got the same diagnosis, my brother handled the news and the outcome with amazing grace and strength. he was sad, he was emotional, but he accepted his fate. he had faith, and he was calm.
i, on the other hand, have not handled anything well. on monday i was able to remain strong in front of him, spending the short amount of time i had sitting by his bedside while he slept, telling him i loved him. he was lucid enough at that time to respond... our family grouped together, as small as it is. bob's ex-wife was a rock, handling everything she could since she was only one mile away from him. she stepped up and i will never forget, or be able to thank her enough.
his two daughters. the oldest, 21, literally 3 days away from her due date with his first grandchild. and the youngest, 12. my angelina... autistic and having a hard time understanding what happened to her papa, and my other brother.
i'm having a hard time understanding that also.
i've written out the basic details. i'm grieving so incredibly hard that i'm having trouble coping with my feelings. there are other things going on in my life right now that are hard, and emotional and i'm not reacting the way i would normally react. i recognize this as grief and i'm trying to give myself a huge break... but i'm failing miserably.
i'm apologizing to people left and right. everyone has been incredibly understanding. jeff has been a rock - with everything that's going on around us right now it's comforting to have him right there by my side, supporting me and loving me.
but there's a huge looming issue that has upset me to no end... and since i know my anger is somewhat misplaced these days, i'm hanging tight before exploding.
that issue is hunterdon medical center. i know this same issue is countrywide. but it just got real personal.
i am not faulting his nursing care. i wasn't in his room long enough to know what that was like. i pray he was comfortable.
here's what i know.
1) he was brought into ER on sunday evening. told there was no hope. i could see with my own two eyes how serious his condition was on monday. no movement. no ability to lift his head. dozing on and off. hospice had been called in. i remember from my mother's death what end of life looked like, and this is what it looked like. i knew he didn't have weeks. i figured 2-3 days at the most.
2) by the time i was able to get to the hospital on monday, it was close to 10:00am. and we were already made aware that different teams were going to be meeting with us during the day to discuss 'everything'.
3) i was able to see early on that none of the teams worked 'together'. there was no communication between them. nobody was able to give us a straight answer other than to push us off to the next 'team'. and when the perky little dietitian wanted to discuss his meal choices even though he was clearly past 'eating' i almost lost it. more on this later.
4) we were advised by someone, and i forget who now (there were so many) that we had to find a place for my brother to go immediately. that he wasn't sick and needing hospital care, he was dying and needed hospice care. but that hospice care was not going to happen in the hospital because medicare won't pay them his room and board.
who do we call? we asked... oh, there's a few places in the area that hospice works with you need to all go start calling places, we'll give you names you can google them.
i'm sorry, what? you're really going to make us move him in the condition he's in?
after i burst out crying, they went on to advise us that medicare won't cover the room and board anywhere we bring him, we need to pay out of pocket, and it will be no less than $10,000 deposit to bring him in, oh, and then there's the transport charges on top of that. but you can try to get medicaid and see if they'll accept him. medicaid will pay for it.
5) i call the first number on the list and sure enough they have a bed for him and it's $350 per day and you'll need to pay 30 days up front. not willing to discuss possible medicaid coverage if it's not already in effect.
6) then the palliative care team - with their leaflets and pamphlets and lists of numbers and organizations and sickly corporate smiles.
more numbers to call more people to ask what to do next....
ask me where we all were for the last hours of my brother's life?
in meetings with these people because they had to guarantee medicare would cover their charges.
for a man who was at the immediate end of his life. and i know that people can surprise you and last for weeks like this - trust me on this one. i knew.
i spent more hours in meetings than i did at my brother's bedside.
and you know what? that's a fucking sin. that's a sin against humanity...
oh wait... there is no humanity there. none. it was all about the money from start to finish.
that hospital was going to make us move my brother to a gurney, leave the hospital and take him in an ambulance to a nursing home, get him situated there, and hope someone would take care of him.
a man that had hours to live. they didn't care. they don't consider end of life to be a reason to be in the hospital.
ok, well then have a fucking hospice in place IN that same hospital. don't put the patient OR the family through what we went through... and i'm sure we're not the only ones.
and if that's not possible, have one team with clear concise answers with the steps we needed to take at what times. not a mish mosh of people in suits with papers and pamphlets. taking us away from what would be the last hours i would ever be able to hear my brother's voice, or look into his eyes.
oh, and i forgot #7) when his 9 month pregnant 21 year old daughter in a fit of despair walks 5 miles to the hospital at 3:00am to sit by her father's side and had been told earlier in the day that she could visit 24/7, she was turned away at the door by the guard. got so worked up she thought she went into labor and they had to rush her over to the ER to be checked out. (when we told the funeral home director this his eyes bugged out and he was appalled)
i know this is occurring all over the country. the way we are treated at end of life is damaged... and that's just inhumane. i kept asking myself and others 'what if a person has no one?' end of life is ascary enough without worrying about your loved ones having to go through what we did.
the system is wrong. so wrong... end of life should not be this hard.... it's hard enough.