Old 01-04-2004, 11:37 AM #1 (permalink)
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Default My Mom Passed Away

My mom passed away on Friday with family all around her! Mom was diagnosed with ALS April, 2002. My dad was her primary caregiver and I've cut back on work to spend time with my mom. She was my best friend and I'm so sad! I can't seem to stop crying! I haven't worn make-up for the last 3 days because my eyes are so swollen! I miss her so badly! She was the most wonderful person in the world! She was so beautiful!
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Old 01-04-2004, 10:03 PM #2 (permalink)
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Dear Debbie
I am so sorry to hear of your mom's passing. I too was with my mom when she died, after a very short and courageous battle with ALS. My mom died over 2 years ago, and I still miss her dearly. I hope you have lots of support from loved ones, and that you are able to treasure your memories of special times with your mom. Be gentle with yourself, and may peace be with you.
Take Care
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Old 01-05-2004, 08:13 AM #3 (permalink)
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Oh Cathy! Thank-you so much! How did you get past your mom dying? I'll see her today briefly at the funeral home, but after that she'll have a closed casket. We've made up some beautiful collages (sp?), but i keep seeing her last suffering breaths in my mind! I know she wouldn't want me to remember her that way, but i can't help it!
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Old 01-05-2004, 06:03 PM #4 (permalink)
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Dear Debbie

I am so sorry for you and your family when we loose a loved one to this dreadful disease it is so bitter sweet. Knowing that your mom no longer suffers from the indignity that als can carry with it is solace, but loosing someone when we are all so hopeful for a cure to come for us is bitter.
When my brother passed away it left me so angry that so many people have to suffer with this disease that I after a period of grieving decided to help out and continue the battle my brother lost by helping at our local level at the als society. While this does not bring back our loved ones we know we are at least continuing to fight this disease. You will meet other family members who are also continuing to battle after they have lost thier loved ones. It does bring some peace of mind knowing you are doing something as you grieve.

But like Cathy says be gentle on yourself remember your mother in happier days when she used to be able to cuddle you and shelter you as a child, she now has greater power to protect you, talk to her often and be quiet and feel her presence. My brother passed away in my arms with his last breath against my cheek as I craddled him I try to think of him laughing and teasing and just being him in his glory days. Thats how I believe he is now free to fly and no longer a prisoner in his body. Take care and continue to let us know how you are doing. Joy
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Old 01-05-2004, 09:21 PM #5 (permalink)
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Thank-you for your kind words, Joy! I'm sorry for the loss of your brother! ALS is the absolute worst disease! We also have Alzhiemer disease in our family and I think it's a much better disease! You don't know what's happening!

We had our day at the funeral home today! I didn't like my mom's make-up, so I put some lipstick and blush on her. If I'd had an eyeliner pencil, I would have put that on her too! Mom was so beautiful and she loved her make-up! We had 2 viewings and both were so packed! She touched so many peoples lives in such a wonderful way! Father Duffy said she was truly a saint! I remembered today that a couple of weeks ago my mom was talking about dying. She said when she died she'd be running in Heaven! That's was how I kept thinking of her! I picture Jesus telling her "no running in the halls!"

Oh Mom, I miss you so much!
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Old 01-06-2004, 01:20 PM #6 (permalink)
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Dear Debbie,

I'm so very sorry for your loss.

I lost my mom on November 8/03 after a 2 yr. battle with ALS. It's been almost two months now and I can't still can't function properly. Everyone tells me not to worry it takes time to heal. I believe that. I've started to go for grief counselling, maybe that will help. I took care of my mom during her illness, now my house is empty during the day and I can't figure out what to do with myself.

I guess the best thing we can do is remember how much we were loved by our mom's, try to remember the good times, try to carry on for our other loved ones. I hope you will be okay. Try to take care of yourself. Feel free to write to me anytime, I'll be happy to listen.

Hugs, SoniaT
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Old 01-07-2004, 07:08 AM #7 (permalink)
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Thank-you Sonia for your kind response! I'm so sorry for you for the loss of your mother to this terrible disease! 2 months isn't really very long, so your grief is still really fresh! I worry about my dad having the same problem you have! He was her primary caregiver and he did everything for her, plus look after a big house! I know he'll be so lost at home too! I plan to go in every Wednesday just to hang out with him, help around the house, take him out for lunch, cook for him. You know that kind of thing. I know that would make my mom very happy!
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Old 01-11-2004, 10:34 PM #8 (permalink)
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hello everyone.

there is only 2 questions left in my mind that I can't get answered. I know all about AlS. First hand. and I offer all my deepest condolences. but.

how does one die from ALS?

When do you know when it's the end?

details?

Is it rude for me to ask?

John
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Old 01-12-2004, 07:14 PM #9 (permalink)
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Hi Johnny
No it is not rude for you to ask at all, the breathing is a voluntary muscle control which as you know is the reason for people suffering from als to loose control of their body functions such as all movement in areas effected by voluntary muscle actions.

When Debbie described her mom's last breaths I think although I could stand to be corrected was what is referred to as the death breath, and not a suffering at all. I was present with my aunt who passed away from liver disease and she also displayed the three gasping breaths that my brother Craig also took. I have been present and witness to my two grandchildrens births and have watched as they struggled to take their first breaths in of life well I can describe the last breaths I have witnessed as a release of the breath we take in at birth it is a pushing out of the air from the lungs rather than an intake. It may look like the last breath is a suffering but contrary it is a letting go of life and a release. This is how the als patients leave when they no longer can control the muscles used to breathe in the air. Hope this answers your questions. Joy
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Old 01-14-2004, 11:25 PM #10 (permalink)
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once again, Joy & Carol.

I thank you for your kind words. I guess that is one way to look at the end. what I guess I was wondering is that some people have passed that were not as progressed as much as me. so I asked my Doctor on Monday through my wife Rita. Why am I still here.

"The bi-pap
machine is helping you to stay alive---Rita told us you use it to keep
you comfortable---if you are ready to die---you can stop the bi-pap
machine and we will increase the morphine to take away all the pain and
discomfort (this would probably happen within days). With the morphine
you will become more and more drowsy and will eventually pass away".

eventually a bipap can not keep up. so it's my choice, sooner or later. I guess this is the answer to which I was seeking.
do I want to live on machines?

thank you
xo
John
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Old 01-15-2004, 01:48 PM #11 (permalink)
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Johnny

I think the end is a very personal choice for all of us, because of the unknown we tend to be afraid to let go of this physical body and life leaving the people who are comforting us and caring for us and who we love and who love us.

How to make this choice must be a daily struggle for you, I do not know how I could make it for myself and for my family. I do know that my brother declined any aggresive treatment offered to him including feeding tubes trachs ect... I cannot explain his decisions only that it was his choice and we had to respect that from him.

I remember reading a story of an pals on the net of how for the last 10 years of his life he was hooked up to all of the equipment possible to allow
him to continue a sort of existance, he had his circle of friends and family come to visit and he had on his ceiling a word chart that he could communicate as he had lost all muscle control except his eyes. Close friends could determine his wishes and deciphre his needs. He finally asked to be unhooked and choose a date for his death, he was not considered by any means as a quitter rather he had decided it was time to leave he no longer wished to be here. His doctor like yours unhooked his breathing appartus and gave him morphine and they put his fathful dog on h is bed with him and surrounded by all his friends and family he left peacefully. If I can go and look to see where I read his story I will post it for you so you could look at it if you want.

No one can consider als patients quitters, given my little experience with this disease I consider that the bravest of all hereos need to rest from the battle and it is up to them to decide when. All my best wishes and love to you and your family you are definetly the hero in this story. Joy
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Old 01-16-2004, 07:22 PM #12 (permalink)
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Thank you Joy.

I communicate via pc, as you can see and use a chart that I designed for when I lay down. I still have some movement in my neck .
the bi-pap is not a life support machine. Many people use it to help with sleeping. Which is the reason I first got it, through a sleep clinic. It has assisted my breathing to help my sleeping disorder. I have chosen no life supports. However I did have a G tube installed way before I needed it because of my difficulties swallowing pills. my whole life I couldn't get pills down my throat. the g-tube was a god send for me. Rita keeps my nutrition levels correct And properly hydrated throughout my illness. I am now on a morphine pump since Monday passed. But Rita wants me to take it slowly as I need it. She wants me to hang on a little longer. As long as I'm kept comfortable, I will hang on as long as i can. I love my family very much and cry each time I think of them.

John
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Old 01-16-2004, 07:41 PM #13 (permalink)
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Thank you Joy.

I communicate via pc, as you can see and use a chart that I designed for when I lay down. I still have some movement in my neck .
the bi-pap is not a life support machine. Many people use it to help with sleeping. Which is the reason I first got it, through a sleep clinic. It has assisted my breathing to help my sleeping disorder. I have chosen no life supports. However I did have a G tube installed way before I needed it because of my difficulties swallowing pills. my whole life I couldn't get pills down my throat. the g-tube was a god send for me. Rita keeps my nutrition levels correct And properly hydrated throughout my illness. I am now on a morphine pump since Monday passed. But Rita wants me to take it slowly as I need it. She wants me to hang on a little longer. As long as I'm kept comfortable, I will hang on as long as i can. I love my family very much and cry each time I think of them.

John
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Old 01-16-2004, 11:56 PM #14 (permalink)
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Hi Johnny

You truly are the hero here and Rita I can share your feelings of wanting John to stay as long as he can with you and your family. My thoughts and prayers are with you both and thank you for sharing your story with us. Johnny I hope you remain comfortable and surrounded by your family.xojoy
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Old 02-06-2004, 08:23 PM #15 (permalink)
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I think someone is lost.

Carol & Joy
I was just surfing and
you know, I didn't even see this page until now; douh. i must be blind too. how are you'll doing?
thank you so much for your support. I am going to stick around as long as I can. Rita will miss me nagging her for help. Lol. she won't pull the plug nor will she give me more candy (=morphine) than I need. so I have no choice there either. I make her so mad. I don't understand why she doesn't just help herself by giving me my candy? it is sugarless. oh well, another day another night. although, time seems to pass quickly these days. I hope things are well and say hello to Henry.

God Bless you all
john
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