Barbie
Extremely helpful member
- Joined
- Dec 29, 2007
- Messages
- 2,684
- Reason
- Lost a loved one
- Diagnosis
- 01/2007
- Country
- US
- State
- FL
- City
- orlando
Hi everyone,
this is the first time I have ever participated in a forum. I have been reading some of the posts here and have had a good cry already. we all sound so patheticly in the same terrible boat and I can relate to so much of what is being said and am so scared because I know what is coming. my husband became sick 12/06--he was diagnosed as possible ALS in 2/07 and tested positive for lyme in 3/07. we of course jumped right on the lyme thing because really, what is the alternative? sadly, he is still going down hill even though he is still being treated for lyme and the ALS is becoming more and more a realistic diagnosed. I am a wreck just like all of you--but here is my problem(I don't know if any of you have faced this or not). . .my husband has not accepted the ALS diagnosed and we have not told anyone that he may have ALS. All we have said is he has lyme, the kids think he will get better, the neighbors and family and friends wonder when is he going to imporve. I am sick to my stomach becasue I cant tell anyone, and I have to field all the questions for people who think he is improving. He wont go to a neuro or als clinic, he wont visit family or friends, he doesnt work anymore or go out anywhere if he might see someone he knows. we own our business so I have taken over his job in addition to taking care of him and the kids. he can barely walk, barely use his hands, and his speach is very difficult to understand.
I dont really want to accept ALS or tell anyone, but people need to understand what we are going through, especially his family. I really think however we need to tell our kids first and that is a huge and horrible task. Of course they know dad is sick, and they see him going downhill so we are not fooling any one. the kids are 18, 16, 13 and 11. On one hand they need to know the truth so they can come to terms with the future and spend time with dad and understand why mom is having a nervous breakdown. On the other hand, they still have the fantasy that dad will get better so they have hope and they still have happiness even if it is short lived. When we tell them they will be devastated. I worry about telling them during the school year becuase their school work may suffer, and I worry about waiting for a school break because then they have too much time to think, and I worry that if I wait for summer dad may be so far gone . . . basicly I just worry.
I really need advice on telling them. should I find a psychologist or therapist first and talk with them or have the kids visit with them, should I talk with the school guidance counselor, should my husband and I just sit them down and say kids, dad is dying and it is going to be horrible and there is no hope?
please help me with advise.
this is the first time I have ever participated in a forum. I have been reading some of the posts here and have had a good cry already. we all sound so patheticly in the same terrible boat and I can relate to so much of what is being said and am so scared because I know what is coming. my husband became sick 12/06--he was diagnosed as possible ALS in 2/07 and tested positive for lyme in 3/07. we of course jumped right on the lyme thing because really, what is the alternative? sadly, he is still going down hill even though he is still being treated for lyme and the ALS is becoming more and more a realistic diagnosed. I am a wreck just like all of you--but here is my problem(I don't know if any of you have faced this or not). . .my husband has not accepted the ALS diagnosed and we have not told anyone that he may have ALS. All we have said is he has lyme, the kids think he will get better, the neighbors and family and friends wonder when is he going to imporve. I am sick to my stomach becasue I cant tell anyone, and I have to field all the questions for people who think he is improving. He wont go to a neuro or als clinic, he wont visit family or friends, he doesnt work anymore or go out anywhere if he might see someone he knows. we own our business so I have taken over his job in addition to taking care of him and the kids. he can barely walk, barely use his hands, and his speach is very difficult to understand.
I dont really want to accept ALS or tell anyone, but people need to understand what we are going through, especially his family. I really think however we need to tell our kids first and that is a huge and horrible task. Of course they know dad is sick, and they see him going downhill so we are not fooling any one. the kids are 18, 16, 13 and 11. On one hand they need to know the truth so they can come to terms with the future and spend time with dad and understand why mom is having a nervous breakdown. On the other hand, they still have the fantasy that dad will get better so they have hope and they still have happiness even if it is short lived. When we tell them they will be devastated. I worry about telling them during the school year becuase their school work may suffer, and I worry about waiting for a school break because then they have too much time to think, and I worry that if I wait for summer dad may be so far gone . . . basicly I just worry.
I really need advice on telling them. should I find a psychologist or therapist first and talk with them or have the kids visit with them, should I talk with the school guidance counselor, should my husband and I just sit them down and say kids, dad is dying and it is going to be horrible and there is no hope?
please help me with advise.
