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Old 02-01-2005, 08:06 PM   #1
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midlsister HB User
Update Sis Home To Die

AS SOME OF YOU KNOW MY OLDER SISTER HAS COME HOME TO DIE(OF MS) MY YOUNGER SISTER HAS MG AND I HAVE MS AS WELL. SHE SAW THE KIDS THIS WEEKEND. THEY HAD SOME QUESTIONS OF COURSE. THE PROGRESSION RATE IS STAGGERING. SHE CAN BARELY CHEW, WALK, TALK ,STANDING WITH HELP,IT IS NOW IN HER LUNGS,
SHE IS SO EMOTIONALLY UDHEAVED.

SHE SUFFERED SO MUCH WITH ALL THE DIFFERENT TREATMENTS IN AN EFFORT TO SLOW PROGRESSION. MY MOM IS CARING FOR VERY WELL. BUT SHE HASN'T TALKED TO ANYONE YET. JUST KEEPING ALL INSIDE.

HOW MUCH SHOULD WE LET THE CHILDREN WITNESS? I KNOW IT IS LIFE BUT SHOULD WE DRAW THE LINE AT WITNESSING SUFFERING! I JUST DO NOT KNOW. THE KIDS ARE 14 12 & 10. I DO NOT WANT THEM TO GET PRECONCEPTIONS THAT IT IS GOING TO AUTOMATICALLY GOING TO HAPPEN TO MOM. BECAUSE SHE HAS IT TO.

MIDLSISTER

 
Old 02-02-2005, 05:59 AM   #2
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AllyG HB User
Re: Update Sis Home To Die

Quote:
Originally Posted by MIDLSISTER
AS SOME OF YOU KNOW MY OLDER SISTER HAS COME HOME TO DIE(OF MS) MY YOUNGER SISTER HAS MG AND I HAVE MS AS WELL. SHE SAW THE KIDS THIS WEEKEND. THEY HAD SOME QUESTIONS OF COURSE. THE PROGRESSION RATE IS STAGGERING. SHE CAN BARELY CHEW, WALK, TALK ,STANDING WITH HELP,IT IS NOW IN HER LUNGS,
SHE IS SO EMOTIONALLY UDHEAVED.

SHE SUFFERED SO MUCH WITH ALL THE DIFFERENT TREATMENTS IN AN EFFORT TO SLOW PROGRESSION. MY MOM IS CARING FOR VERY WELL. BUT SHE HASN'T TALKED TO ANYONE YET. JUST KEEPING ALL INSIDE.

HOW MUCH SHOULD WE LET THE CHILDREN WITNESS? I KNOW IT IS LIFE BUT SHOULD WE DRAW THE LINE AT WITNESSING SUFFERING! I JUST DO NOT KNOW. THE KIDS ARE 14 12 & 10. I DO NOT WANT THEM TO GET PRECONCEPTIONS THAT IT IS GOING TO AUTOMATICALLY GOING TO HAPPEN TO MOM. BECAUSE SHE HAS IT TO.

MIDLSISTER

 
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Old 02-02-2005, 08:42 AM   #3
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Re: Update Sis Home To Die

that's so tough, i'm so sorry to hear about all of this. it's a tough call to know how much to let children witness. i don't know, i don't have children. however, it seems like children will know where their threshold is... don't force them either way. try to talk about the disease and how it effects people differently...

 
Old 02-02-2005, 10:20 AM   #4
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Jewel2 HB User
Re: Update Sis Home To Die

Dear Midlsister,
I am so sorry you are going through this incredibly difficult time. Although I have children, I have never faced the situation of them watching a loved one die. I agree with Sunshine that your children probably know their threshhold. Be sensitive to their comments and don't push.

Personally, I feel that unless your children can really contribute to the quality of your sister's life, there is no need to replace their happy memories of their aunt with lots of new memories of suffering. Yet, it is not a bad thing for them to start understanding the realities of life, including suffering and death. Just take their cues.

Also, as Sunshine said, I think it is extremely important that they understand that MS affects people so differently and that your sister's disease progression is rare. My mother has had MS for 17 years and has very little disability (weak legs and fatigue). Otherwise she is in wonderful health and will outlive many of her peers. I share this with you so that you can use this example when talking to your children if you think it is appropriate.

Best wishes,
Julie

 
Old 03-21-2005, 12:12 PM   #5
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Re: Update Sis Home To Die

Midlsister-
I just recently read your post about your children seeing your sisiter suffer and thought i would offer my advice. While I was growing up had to watch my fathers MS progress and just a month ago he was given only six months to live. I am now twenty years old and seeing him suffer was the hardest thing I have ever had to deal with, so I would limit your childrens exposure to your sister and allow them to remember her as she was cefore she became so sick.
Also, I was wondering if you had any advise on coping with a family member ding and saying good bye.

Last edited by ryka; 03-21-2005 at 12:13 PM.

 
Old 03-21-2005, 06:04 PM   #6
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Moon Rising HB User
Re: Update Sis Home To Die

ryka, I feel your pain. Do you have MS also?
I watched my Dad die of cancer. I took him to his kemo infusions , his radiation treatments, held the trash can for him to get sick in. But I stayed strong around him and would only breakdown when I was alone. I never let him see me cry, because it would upset him. My family never told each other that we loved one another, I guess I just grew up that way, but they showed me they loved me in other ways. My DAD told me he loved me once. It was the day I found out I was pregnant and only 17 years old, and I thought he was going to kill me! Instead he put his arm around me and said I love you, and kissed my head.
So when my dad was dying I always kissed his head and said I love you before I left. I dont know why it was so hard for me say those 3 little words when I was growing up.
He was suffering and had had enough thats when I realized It was better for him to die, he suffered long enough and I just wanted his pain to go away. Thats when I realised there is a better place for him than here. Just remember the good times and be there for him, people dont like to die alone, even the stubbern ones. I think he would have lived longer without those treatments that made him so sick. And me having MS I dont want the treatments that make me sick. That experience made me turn against the injection shots. If I'm going to go, then let me go ,Then Its my time then. I know this will be the hardest thing you'll ever go through in your life, just say everything in your heart, and everything you need too. My best to you and your dad, take care.--sorry so long

--------Moon

 
Old 03-22-2005, 12:39 AM   #7
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Re: Update Sis Home To Die

I don't have any kids, but when I was 9 my sister was diagnosed with a blood disorder called aplastic anemia. She died 3 years later (she was 20). I was told very little about her disease and the only reason I got to see her right before she died is because I overheard someone say she wouldn't make it thru the week and demanded to go to the hospital to see her (5 hour drive). No one ever told me she might die, I was taken by surprise. I think parents need to be open an honest about situations like this--when kids don't know for sure what is going on they make their own assumptions and often they are wrong and scary. Sit down with your children and explain what is happening with your sis, why it is happening, and that just because it's happening to her doesn't mean your situation will be the same. I understand about not wanting them to witness what is happening--the important thing is that what they DO see is explained to them so that they understand and can be supportive. Kids are tough, they can usually handle a lot more than adults think.

 
Old 03-22-2005, 09:46 PM   #8
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Re: Update Sis Home To Die

Moon-
No, I don't have MS....Thans so much for sharing your experinces with your father. Knowing that other people can relate to what you are going through can be such a relief.
It sounds like our fathers are very similar. My father doesn't communicate his feelings very easily and just started saying "I love you" when he found out he was dying. I recently went to visit him and had planned on having a meaningfull emotional conversation before he passed away, however he still was not able to really talk to me about his feelings so we have begun writing eachother letters to communicate feelings. This has been very helpful and allowed both of us to get out some feelings that need to be let out before he goes.
Hope all is going well and that everything with your MS is going ok
Ryka

 
Old 04-08-2005, 01:40 PM   #9
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Re: Update Sis Home To Die

I wanted to say that I am sorry that your family is going through this tough time. My father in law has had MS for almost 30 yrs. He can not walk or use his right hand and only limited use of his left hand. When I met him 17yrs ago he could only crawl. The MS has progressed steadily since. I have four kids, 13,10,9 and 4 and they all have been around him their entire lives. he lives with us and we are his caregivers. My children are growning up to be very caring and empathetic people. When my mother was dying from ovarian cancer last year I let the kids see her up until her last day, she looked fine but very thin and could no longer communicate. My 13 and 9 yrs old were a little afraid to say goodbye so I told them they did not have too, but my 10 yr old daughter felt very strongly about seeing her grandma. They also went to her funeral and participated fully. I think it is was very healthy. I think it's best to talk to the kids. Just listen to them and watch their ractions becasue kids will let you know when they have enough information.

 
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