Guest guest Posted November 8, 1998 Report Share Posted November 8, 1998 When my Mom died, I had to be honest with the funeral director and told him Mom had CJD. She was not embalmed and was cremated. The attending physician was given the opportunity to do an autopsy, but he never returned any phone calls. Therefore, none was performed. Doing any autopsy or embalming can be very dangerous to those exposed. I can understand to a point. We must understand and take the mode of transmission (communicability) into consideration. It is tough and ignorance is a tough thing to beat. Get some facts from internet sites. Read, study, ask questions. Try to understand this tragic and disgusting disease. I am sure you do not want anyone to go through this disease. We had a beautiful service for my Mom. It was a real pleasure to have had her with me for over 54 years, and now it was time for me to share her with our Lord and so many of her friends. God bless that take care. Nick a Grau wrote: > > > I found this on a message board can anyone help? > his email address is shawnh1041@... > a G. > > Trouble with CJD burial > Friday, 06-Nov-98 16:48:40 > > Message: > 152.163.197.47 writes: > > People who have lost loved ones to CJD, did you have trouble with burial? > Also did you have troubles with finding a patholigist and a place for > removal of the brian for donation? > > My father has CJD and is in the final stages of the disease. And if he > would die today, we couldn't do any thing with his body. Everybody is > afraid here in Nebraska. Email > > me if you can help > > Hansen > > ------------------------------------------------------------------------ > Did you ever want to participate in video chats, send real-time video > and video mail? Now you can, AND at a super low price--ONLY $89.95! > http://orders.xoom.com/zvc/emzvc921 > ------------------------------------------------------------------------ > If you have any questions, problems, concerns, etc... please contact Liz at LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or Beverly G at Bevalso@.... -- N. Angelo de Cecco nesd@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 1998 Report Share Posted November 8, 1998 Nick: It's stories such as yours that remind me just how very lucky we were when Dad died. He died in the VA hospital in Salem, Virginia and an autopsy was done. Since we were burying him in W.Va., the embalming had to be done before they transfered him to another state. We had no difficulties whatsoever with anyone. We were so lucky, thank you for reminding me of this. I think this should be an issue we need to address as a group. We have discussed it before and attempted to compile a list of facilities where families can go and expect not to have any problems. Maybe we should undertake this project for the benefit of others in the future. We would need people from each state to call around in their area and ask the hospitals/funeral directors etc.... if they would be willing to handle a CJD autopsy/burial. If we kept a list of these facilities we could be better equiped to refer others when the time came. Liz. << When my Mom died, I had to be honest with the funeral director and told him Mom had CJD. She was not embalmed and was cremated. The attending physician was given the opportunity to do an autopsy, but he never returned any phone calls. Therefore, none was performed. Doing any autopsy or embalming can be very dangerous to those exposed. I can understand to a point. We must understand and take the mode of transmission (communicability) into consideration. It is tough and ignorance is a tough thing to beat. Get some facts from internet sites. Read, study, ask questions. Try to understand this tragic and disgusting disease. I am sure you do not want anyone to go through this disease. We had a beautiful service for my Mom. It was a real pleasure to have had her with me for over 54 years, and now it was time for me to share her with our Lord and so many of her friends. God bless that take care. Nick >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 1998 Report Share Posted November 9, 1998 I imformed the funeral home about my mother's disease and was gratified that the director went out of his way to make sure that all of our needs were met. When I described the disease, I was assured that all precautions would be taken and the only thing that we needed to worry about was letting them know what else we might need. dolores colunga-mortman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 1998 Report Share Posted November 9, 1998 << That is acually the health departments requirements. >> : Isn't it amazing how differently things are handled in different regions and by different governmental entities! Liz. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 1998 Report Share Posted November 9, 1998 Liz, In Australia embalming and burial are not permitted for CJD victims.. We are only allowed to cremate. The body is sealed in body bags and under no circumstances is it allowed to be opened. That is acually the health departments requirements. Re: a message >From: LArmstr853@... > >Nick: > It's stories such as yours that remind me just how very lucky we were when >Dad died. He died in the VA hospital in Salem, Virginia and an autopsy was >done. Since we were burying him in W.Va., the embalming had to be done before >they transfered him to another state. We had no difficulties whatsoever with >anyone. We were so lucky, thank you for reminding me of this. I think this >should be an issue we need to address as a group. We have discussed it before >and attempted to compile a list of facilities where families can go and expect >not to have any problems. Maybe we should undertake this project for the >benefit of others in the future. We would need people from each state to >call around in their area and ask the hospitals/funeral directors etc.... if >they would be willing to handle a CJD autopsy/burial. If we kept a list of >these facilities we could be better equiped to refer others when the time >came. Liz. > > > > > ><< > When my Mom died, I had to be honest with the funeral director and told him >Mom had CJD. She was not embalmed and was cremated. The attending physician >was given the opportunity > to do an autopsy, but he never returned any phone calls. Therefore, none was >performed. Doing any autopsy or embalming can be very dangerous to those >exposed. I can understand > to a point. We must understand and take the mode of transmission >(communicability) into consideration. It is tough and ignorance is a tough >thing to beat. Get some facts from > internet sites. Read, study, ask questions. Try to understand this tragic >and disgusting disease. I am sure you do not want anyone to go through this >disease. We had a > beautiful service for my Mom. It was a real pleasure to have had her with me >for over 54 years, and now it was time for me to share her with our Lord and >so many of her friends. > > God bless that take care. > > Nick > >> > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1998 Report Share Posted November 10, 1998 In a message dated 11/9/98 7:26:26 PM Central Standard Time, wmadge@... writes: << In Australia embalming and burial are not permitted for CJD victims.. We are only allowed to cremate. The body is sealed in body bags and under no circumstances is it allowed to be opened. That is acually the health departments requirements. >> WOW.....I had my husband cremated and I still have him at home with me! Boss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1998 Report Share Posted November 10, 1998 In a message dated 11/10/98 9:39:36 PM Eastern Standard Time, LadyBoss56@... writes: << WOW.....I had my husband cremated and I still have him at home with me! Boss >> I had no problems with the funeral parlor or the cemetery. The funeral director told me he was not worried about embalming a CJD patient as they would just use the same precautions as they do for people who die from AIDS. He also told me that he had buried two others before my husband and he knew about CJD. I had him buried in a crypt.......................Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1998 Report Share Posted November 10, 1998 Hi ... Good on you... We put my brother in a rose garden (at the cemetry) with other family members,,,ie,,dad,sister..grandparents,,thats where he wanted to go Re: a message >From: LadyBoss56@... > >In a message dated 11/9/98 7:26:26 PM Central Standard Time, wmadge@... >writes: ><< In Australia embalming and burial are not permitted for CJD victims.. > We are only allowed to cremate. The body is sealed in body bags and under no > circumstances is it allowed to be opened. That is acually the health > departments requirements. > >> >WOW.....I had my husband cremated and I still have him at home with me! > Boss > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1998 Report Share Posted November 11, 1998 You are all so very blessed....the coroner here would not even let us have my husband's body as they would not open the body bag so I could verify his body....to make a long story short...I never did get his body back. We just had to have a memorial service Beverly B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1998 Report Share Posted November 11, 1998 The coroner in Riverside County died of CJD a few years ago and ever since, if someone dies of CJD, the coroner refuses to open the body bag as it is " so contageous " . Luckily, UCLA agreed to do the autopsy for research purposes, but would not release the body/remains back to us. I do know where his remains were cremated and sent tho. Beverly B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1998 Report Share Posted November 11, 1998 What I can't believe this. I have never heard of such a thing. In my town of Woonsocket, RI I personally attended three funerals of loved ones that had died from familial CDJ and no one had any trouble with funeral arrangements. When I had to make arrangement for my husband there was no mention of any concerns. My mother in law did not encounter any problem, neither did a cousin. I find this situation to be so incredible. I also sympathize with all of you that have encountered problems such as Beverly B.'s Jackie Laplante ext.309 Re: a message From: SBarwick@... You are all so very blessed....the coroner here would not even let us have my husband's body as they would not open the body bag so I could verify his body....to make a long story short...I never did get his body back. We just had to have a memorial service Beverly B. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1998 Report Share Posted November 11, 1998 In a message dated 11/11/98 11:15:52 AM Central Standard Time, SBarwick@... writes: << You are all so very blessed...I never did get his body back. Beverly B.>> Bev, I am so sorry.........it meant the world to me to be able to finally bring him home after this ordeal.....it's been almost 3 years and I have no plans on putting him anywhere yet...I am still taking care of him.....I have informed my kids that if I go before I make final plans for him they are to put me in the same box and call the VA and they will put us in Fort Snelling cemetary......I had thought I would like to scatter......but am leary of the possible contamination?!? so I won't.......my kids may have awhile to wait I'm 42 Boss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1998 Report Share Posted November 12, 1998 << did anyone send a message directly to ....he isn't on CJD Voice is he? Thanks Robin >> I had already corresponded with by the time the email went thru Voice, and I sent him an invitation to join the email list. thanx. Liz. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1998 Report Share Posted November 12, 1998 Thank you , for your note. We had made plans to cremate Steve and sprinkle him in the ocean, but it was never to be. I am only 45 and Steve was 48 when he died. I just keep reminding the kids (AND MYSELF) that the body was not where Steve is...it was just a body. We have our own " special " place we created where we can go if we need. Thanks again hugs, Beverly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1998 Report Share Posted November 12, 1998 Hi Robin...I wrote directly to , but never heard anything back.. hugs,Bev B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1998 Report Share Posted November 12, 1998 Yes I have replied to twice personally.. A message > > >I have a quick question...a G. sent through a message back on 11-7 (I >am a bit behind in responding) saying that she found a post on a message >board from a Hansen. I have seen things come through the onelist >replying to it, but did anyone send a message directly to ....he isn't >on CJD Voice is he? Thanks Robin > > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1998 Report Share Posted November 12, 1998 I found the following " saying " in Mom's room while we were cleaning out her personal effects. " When someone you love becomes a memory, the memory becomes a treasure " I think it says a lot! Nick At 02:29 PM 11/12/98 -0500, you wrote: >From: SBarwick@... > >Thank you , for your note. >We had made plans to cremate Steve and sprinkle him in the ocean, but it was >never to be. I am only 45 and Steve was 48 when he died. I just keep >reminding the kids (AND MYSELF) that the body was not where Steve is...it was >just a body. We have our own " special " place we created where we can go if we >need. > >Thanks again > >hugs, Beverly > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1998 Report Share Posted November 12, 1998 Robin, Since he said he lived in Nebraska, I did send a message, but did not hear back from him. Shar ---------- > > To: cjdvoice (AT) onelist (DOT) com > Subject: A message > Date: Thursday, November 12, 1998 6:35 AM > > > > I have a quick question...a G. sent through a message back on 11-7 (I > am a bit behind in responding) saying that she found a post on a message > board from a Hansen. I have seen things come through the onelist > replying to it, but did anyone send a message directly to ....he isn't > on CJD Voice is he? Thanks Robin > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 1998 Report Share Posted November 13, 1998 thank you.....hugs, Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 1998 Report Share Posted November 13, 1998 thank you.....hugs, Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 1998 Report Share Posted November 13, 1998 thank you.....hugs, Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1998 Report Share Posted November 16, 1998 Let me know if I can help. The funeral director's association in New Jersey has published guidelines. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1998 Report Share Posted November 16, 1998 Let me know if I can help. The funeral director's association in New Jersey has published guidelines. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1998 Report Share Posted November 16, 1998 Let them know how pleased you are with their knowledge and sensitivity. Marie Quote Link to comment Share on other sites More sharing options...
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