Losing a loved one - Jemsite
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post #1 of 27 (permalink) Old 05-22-2006, 11:25 AM Thread Starter
 
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Losing a loved one

As you may have read, my father-in-law and great friend is dying. Not sure why I am posting here except to just let some pain out. He was diagnosed with CJD last week, which is an incurable form of madcow disease that affects the brain; it's terrible. Not sure how he got it; either by ingesting infected meat (years ago perhaps; it can lay dormant for 20-30 years before showing. Once it shows you have 2 months roughly to live.) Currently he is in a sleeping state and they removed the feeding tube. He will be transported to a hospice later today where he will pass away comfortably...we don't know when. I am enraged and clawing at the walls trying to surf the web for some kind of something for a cure. I am not a doctor, I am just trying to do something, anything. His brain is not dead, he is in there! Trapped in his body which will not work due to the neurological destruction of a buildup of protein cells on brain cells. There has to be something to remove the buildup so they can function but there is nothing except experimental drugs which are not proven to work. He still has his memory, but these cells seem to infect the brain, preventing talking, eating, seeing, moving, basically any motor skills. For the last 2 weeks he has been "sleeping" with the occasional tearing from his eyes when we talk to him on our daily visits, which we know it's him crying...that sux. In all these cases people pass away. I cannot accept this and it's very unfair. I'm losing my very close friend and we didn't even get to do all the things I wanted to do like more baseball games, horse racing (he loves that), etc. This is really hard.....just thought I would vent.

There is a case of a 25 year old girl that has this as well. Her parents are force feeding her and she has been alive for close to 2 years with this. She does nothing though, but sleep, as if in a coma. It's like having a large life-sized doll and that is it. They refuse to let her go and are keeping her around until a cure is found. They know it is "wrong" but they can't let her go and in the end they know they are delaying the inevitable.

It's upsetting and I am seeing life in yet a different angle. He has told me he would never want to be like this. It is hard knowing he is just laying there waiting to die and doctors are like...well, that's how it is, there is no cure...we are sorry. I know that's life............it's BS! We were just having a beer 5 weeks ago....it's a terrible downhill battle that progresses very fast. Our lives are turning around.......he was only 61 and in perfect health before this BS!

Thanks for reading and I wish you and your families well !

Steve

Last edited by shredmaster; 05-22-2006 at 11:34 AM.
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post #2 of 27 (permalink) Old 05-22-2006, 11:30 AM
 
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Re: Losing a loved one

Not much I can say other than I hope time passes quickly for you and I hope you look after yourself.
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post #3 of 27 (permalink) Old 05-22-2006, 11:33 AM
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Re: Losing a loved one

sorry to hear... i missed that thread

if it any small consolation please be aware that he will be in great hands... Hospice has some of the finest and most caring people working for them and provides amazing care and assistance in what is a tumultuous and upsetting time in our lives. best regards to you and the family... glen
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post #4 of 27 (permalink) Old 05-22-2006, 12:01 PM
 
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Re: Losing a loved one

Very sorry to hear shred CJD is a rare and sad affliction. Hang in there man. Your Jemsite brothers are here for ya
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post #5 of 27 (permalink) Old 05-22-2006, 01:34 PM
 
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Re: Losing a loved one

^that's right!

we are here for you man! you have to be strong

BLAKK:JAKK
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post #6 of 27 (permalink) Old 05-22-2006, 01:45 PM
 
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Re: Losing a loved one

I'm very sorry to read your post. We *are* hear for you. On a positive note, it was actually nice to read that your father-in-law has become your "great friend". I don't think many people could say that. I know I can't. We're more like good acqaintances. Your closeness with him is obviously making it harder on you, but hopefully you can take some comfort in knowing that you did something for him during his life: you were his friend. So (I don't want this to sound patronizing) try to remember you could have been just an in-law to him, but instead you apparently became his son. I'm sure he appreciated that.

All the best to you and your family.
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post #7 of 27 (permalink) Old 05-22-2006, 02:06 PM
 
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Re: Losing a loved one

CJD is one of the most distressing diseases for any family to go through, I'm incredibly sorry that you have to go through this.
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post #8 of 27 (permalink) Old 05-22-2006, 02:11 PM
 
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Re: Losing a loved one

Quote:
Originally Posted by BLAKK:JAKK
we are here for you man! you have to be strong
+1
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post #9 of 27 (permalink) Old 05-22-2006, 02:20 PM
 
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Re: Losing a loved one

sorry to hear this I wish you and your family the best.
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post #10 of 27 (permalink) Old 05-22-2006, 02:28 PM
 
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Re: Losing a loved one

All the best shred, my uncle had parkinsons and dementia, I know what its like.
as in any situation that really, really sucks, time is the only thing thats really going to help you heal and soothe your distress.
for my 2 cents, keep yer chin up and dont treat him differently, just remember to tell him that he is loved and say goodbye.
your wife will need you too, its her Dad

all the best shred.....
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post #11 of 27 (permalink) Old 05-22-2006, 05:42 PM Thread Starter
 
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Re: Losing a loved one

thank you for the kind words. as of now he is still alive but say they aren't moving him to the hospice due to it being very close.

i'm taking this to the media with the research i have done. it's amazing how many un-reported cases of CJD there are. on the death certificate it is written as something else other than CJD (madcow in humans.) i didn't realize how many doctors and neurologists were told to keep their mouths shut. it's BS.

Steve
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post #12 of 27 (permalink) Old 05-22-2006, 06:34 PM
 
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Re: Losing a loved one

Quote:
Originally Posted by BLAKK:JAKK

we are here for you man! you have to be strong

BLAKK:JAKK
+2
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post #13 of 27 (permalink) Old 05-22-2006, 06:35 PM
 
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Re: Losing a loved one

Very sorry to hear man...All the very best to your father in law. Take care of yourself
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post #14 of 27 (permalink) Old 05-22-2006, 06:38 PM
 
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Re: Losing a loved one

Quote:
Originally Posted by shredmaster
i didn't realize how many doctors and neurologists were told to keep their mouths shut. it's BS.
Steve
Sadly enough, there are two reasons why they keep their mouths shut about CJD.

1.) They don't want mass hysteria.

2.) MONEY!!!

If they had a cure for all diseases then there would be no need for a doctor other than for broken bones, cuts from an accident, etc.

Broken bones / cuts heal = no more money. An incurable disease keeps the money flowing in until the patient passes on.

I truly believe there ARE cures for diseases such as Aids and Cancer that they are not disclosing to the public. There are documented cases.

I don't trust um as far as I can throw them.

Again...very sorry. My grandmother died from Alzheimer's. Nothing worse that see someone literally lose their mind
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post #15 of 27 (permalink) Old 05-22-2006, 07:52 PM
 
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Re: Losing a loved one

I work at a company that writes software to help get drugs to market faster. Yes of course we all want to make money (I mean, it's a job right? gotta pay the bills) but its also about finding cures so we can have better quality of life. And believe me the doctors have no shortage of work to do.

I don't know what neurology trials there are. Have you tried ClinicalTrials.gov? We have done some work with cardiovascular trials and there is some interesting stuff going on, but it takes years to test it out and usually it doesn't pan out for most people.

I lost my father when I was young and I sometimes wonder whether it would have been harder to lose him more slowly later in life; his parents died of cancer, and he never spoke about. I hate to look back though; and it makes no sense to speculate anyway. You get some amount of time and you make the most of it.

My condolences,

-Peter
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