Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 : People do very stupid things when they are grieving, helpless and desperate. This, of course, does not excuse what Jay's parents did. If they continue to interfere, there would probably be a way to limit their visitation (or prohibit it completely) if can show that there is the possibility that they might do it again. I am sure that a wife's wishes would take precedence over anyone else. I know that when my dad died of CJD and then about 3 months later a co-worker and close friend of mine lost her husband to CJD, someone in my husband's family (very close to me, I thought) had the nerve to tell me that maybe I passed the disease on to my co-worker's husband. This person even had the nerve to call me a " black widow " . It hurt me so much, I got off the phone and cried. I still can't forget it and I haven't been able to feel the same about this person since that incident. Tell that she knows what is best for Jay and that she needs to ignore all of the comments and actions of those who don't have a clue what she is going through. Beverly G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 : The important thing for everyone to remember is that Jay has a family. Those boys are going to be forever devestated by this disease, they don't need anything else added to their plate. I know this is out of your hands and 's hands but it is important for to reassure those boys that she will be there for them and protect them. I'm sure they are seeing their father taken away and are scared the same thing will happen to them. Does Jay's family realize what this disease is? Try to put your emotions to the side and educate them. This is a horrible thing to happen, family support is the one thing that needs to happen. Bottom line..... all of you love Jay and are scared and want what is best for him. Don't let him spend his last days seeing his family ripped apart. I know there is only so much you can do to get along with them but just remember.... it's all because you love him. Do what you think is right, after Jay is gone you'll look back and have no regrets. Don't give in to anger and don't drop down to that level...... you'll be glad you didn't when everything is said and done. I hope this helps and I hope it makes sense. I'm very sorry to hear that this is happening. If you think it would help for one of us to call Jays mom or his sister let me know. Take care. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 Suzanne: Garrett is in T-1. He is 6 1/2yrs. Zach is in daycare. He is 3yrs. I think told Garrett's teacher. The daycare knows. I live 1 1/2hrs away in Tulsa, OK. lives in Miami. Our Dad lives in Miami. He has been helping alot with the boys. The boys know Dad is really sick, but now that he has a disease. has gone without a paycheck for 1 week now. She will also not be able to go back to work next week either. She has to go to her dr. She has to get an immuglobon(?spelling) shot thru an IV. It takes 5-6hrs. for 4 days. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 This is an extremely difficult and SCARY time for everyone....I truely understand how you (and everyone) feels.The disease is fatal...No one wants their loved one to go. The best thing you can do right now is to keep " peace " and have a good head on your shoulder...Always think what is best for Jay and . If you have time, take the children to your home for the weekend...or an overnight. They are young and confused...and could use a different atmosphere, a movie, a trip out for pizza...etc. Just be there....listen and support. Everyone reacts different. I once took my aunt, my mom's older sister to visit her in the hospital. By now my mother was bedridden and not talking...My aunt kept calling out to my mother...and was upset she had made the trip to Boston and my mother never talked to her...She voiced this to the nurses and anyone else in the hospital room.....I had to bite my tongue....I had all I could do not to yell at her and say: " SHUT-UP!!! MY MOTHER IS DYING...CAN'T YOU THINK OF ANYONE ELSE BUT YOURSELF? " After my mom died, she made a few comments... " I hope she didn't give this to me. " It's not easy.....Stay strong....and I found prayer helped me get through this. Suzanne Fwd: Kidnap? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 Another point to make is that everyone connected to the person with CJD is made extremely aware that they may not be immortal! This fear may be expressed in helpful ways or it may be expressed in anger and blame. My family was extremely lucky in that we discussed (sometimes with anger) what was going to happen, but accusations of 'not caring', 'who's fault', etc. were kept to a minimum. I agree with Suzanne that the children are the most important consideration at this time. Losing a parent is bad enough, but to CJD and with a family in turmoil can only have extremely disastrous effects upon the small ones. My prayers are with , Jay, the kids and with . Hang in there for each other. Shar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 , Jay and 's children have been on my mind all day. How old are they? Do they go to school? Are their teacher's and principal aware of what is going on with their father? Does the school have a school psychologist? A nurse? Are they aware of CJD? These children may need outside support. I have been working in a school with special needs - developmentally delayed children for over 20 years... I can't tell you how hard it is on children that come from a home with problems.....Since you are there for them...maybe you could help care for the children...Someone needs to help the little ones....Maybe you can make this your mission..... Suzanne Re: Fwd: Kidnap? > > > > >Another point to make is that everyone connected to the person with CJD is >made extremely aware that they may not be immortal! This fear may be >expressed in helpful ways or it may be expressed in anger and blame. > >My family was extremely lucky in that we discussed (sometimes with anger) >what was going to happen, but accusations of 'not caring', 'who's fault', >etc. were kept to a minimum. I agree with Suzanne that the children are >the most important consideration at this time. Losing a parent is bad >enough, but to CJD and with a family in turmoil can only have extremely >disastrous effects upon the small ones. > >My prayers are with , Jay, the kids and with . Hang in there for >each other. > >Shar > >------------------------------------------------------------------------ >Ideas on how we can improve ONElist? >http://www.onelist.com >Check out the Suggestion Box feature on our new web site >------------------------------------------------------------------------ >If you have any questions, problems, concerns, etc... please contact Liz at LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or Beverly G at Bevalso@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 , Whew!!! That's alot on one plate.... Thank God for your dad.... Is your mom living? Do you get to visit ? Maybe with school vacation coming up next month you could either go there....or take the boys for a while. (I'm not sure if our school vacations are the same as yours....or if your have a family....or job.) If you want to email me privately feel free.... I will keep you in my prayers. Suzanne Re: Fwd: Kidnap? >From: Chedpep@... > >Suzanne: > >Garrett is in T-1. He is 6 1/2yrs. Zach is in daycare. He is 3yrs. I think > told Garrett's teacher. The daycare knows. > >I live 1 1/2hrs away in Tulsa, OK. lives in Miami. Our Dad lives in >Miami. He has been helping alot with the boys. The boys know Dad is >really sick, but now that he has a disease. > > has gone without a paycheck for 1 week now. She will also not be able to >go back to work next week either. She has to go to her dr. She has to get an >immuglobon(?spelling) shot thru an IV. It takes 5-6hrs. for 4 days. > > > >------------------------------------------------------------------------ >Come check out our brand new web site! >http://www.onelist.com >Onelist: Making the Internet intimate >------------------------------------------------------------------------ >If you have any questions, problems, concerns, etc... please contact Liz at LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or Beverly G at Bevalso@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 1999 Report Share Posted March 7, 1999 , his parents need to be educated about this disease!! That's why they reacted that way. When my mom was sick we tried everything (from pills to vitamins to several doctors) When you don't know what's wrong & your desperate, you will go to any extreme (as his parents did). It's so sad. They have to realize that there is NO cure for this disease. I feel so sorry for his family. I have an idea of what they are going through. Tell the doctors to explain it to them. -or- have them read these letters on CJDVoice. They just want to help there son. It's going to be a rough road for them. It's so sad. Why? Why such helpless, loving people? It just isn't fair. Well, good luck to you & your family, e Quote Link to comment Share on other sites More sharing options...
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