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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 04-08-2005, 07:30 AM   #1
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Not coping well! Mom in last stages of ALS!!

My Mom is 79 and was just diagnoised with ALS last year. She is going very quickly! She is ready for hospice services. I have 4 sisiters & one brother. They all seem to be coping better with the fact that she will not be suffering and will be with God! I am the furtherest away from where they all live. I feel powerless to help here.

I am not coping well with her dieing! I feel as if I may lose it or have a breakdown! I am not ready to lose my Mom! I am meeting with a councelor today am already on meds for my own personal issues!

How do I let heeer go??? I can't stop crying!!

Pam

 
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Old 04-09-2005, 01:54 PM   #2
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Re: Not coping well! Mom in last stages of ALS!!

Hi,

I lost my Mom to ALS 5 years ago. She was definitely my best friend- next to my husband. I was only 27 when I lost her. You never want to let your Mom go- but after watching the symptoms progress of this disease and seeing what she is going through, you come to the realization that she is going to a much better place. A place where she can move again and run, a place where she can eat without getting choked and speech without difficulty. You cherish the wonderful years that you had with your Mom. With your Mom being 79, you cherish that you had so many wonderful years with her. I volunteer my time with a local ALS Support Group and have watched young people - in their early 30's die with this disease. One gentleman passed away last year and at the funeral- his young wife held their 2 year old son on her lap. He will never remember his Dad. I miss my Mom terribly- but I thank God that she was able to see me raised and that I had her there for guidance and love. So many are not given this.
We will all come to this road sometime, whether it be to old age or an illness or an accident. Please know- that you have an opportunity that many people never get. You have an opportunity to say everything that you could ever want to say to your Mom and you have an opportunity to say Good bye and I will see you again. So many people die in accidents each year and their loved ones are left in shock and were never able to say those special words that they would want to say. What time she has left, cherish it- tell her each day that you love her. This is the greatest gift.

 
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Old 04-10-2005, 07:26 PM   #3
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Re: Not coping well! Mom in last stages of ALS!!

Thank you! You are so right. I am able to say goodbye & I love you each day! I am not losing her without saying goodbye!

I am going to print this out & use it to remind me of these things! Thanks again for your Perspective. I appreciate it!

Hugs, pferg

 
Old 05-14-2005, 06:46 PM   #4
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Re: Not coping well! Mom in last stages of ALS!!

What beautiful advice. It's true...we all need to be grateful for the time we are given both for ourselves and with those we love.

May you and your mother find peace. Please keep reaching out to others for support, be there and love your mom, and appreciate every wonderful moment you have.

God bless.

 
Old 05-15-2005, 05:07 PM   #5
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Re: Not coping well! Mom in last stages of ALS!!

Thank you so much for the advice & nice thoughts. My Mom has since died of ALS! We were told she was ready for hospice. We figured 0-6 months. She all of a sudden took a turn for the worse & died suddenly! Thank god even though we were taken a bit off guard all 5 of her daughters were with her when she died! It was April 29th, I am still very sad that she is gone & miss her terribly!! It's hard for me to see the good things right now. I know I will in time!

Pam

 
Old 05-15-2005, 09:12 PM   #6
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Re: Not coping well! Mom in last stages of ALS!!

Hi,

You have my condolences in the loss of your Mom. In my years with hospice-I saw many patients who would chose for all of their family to be there. They were then at peace and could make the transition to their eternal home.
I lost my Mom five years ago- and there are still many times that are home, but after seeing so many people lose their life at young ages-- I realize that I was blessed to have her in my life for 27 years. I can't imagine the person I would have been without her love and guidance. You Mom is very much a part of you and will continue on in everything you do.
Healing takes time. Day by day-- things will become easier.

My prayers are with you and your family.

P.S. My Mom had the bulbar form of ALS which is extremely rapid and progressive. It took almost a year after symptoms for her to get diagnosed, but just 3 months after diagnosis- I lost her.
I do look at it as a blessing that she never became paralyzed and did not lose all of her abilities. She did lose her speech and most of her ability to swallow- but she was always able to express her needs and her words through writing and mouthing words.

 
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Old 05-16-2005, 08:30 AM   #7
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Re: Not coping well! Mom in last stages of ALS!!

Thank you for you kind words! I did not hear the word bulbar mentioned. That may have been why she went fairly fast too!

Pam

 
Old 05-16-2005, 12:39 PM   #8
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Re: Not coping well! Mom in last stages of ALS!!

Hi,

The bulbar onset of ALS just signifies that the ALS started in the muscles that control speech/swallowing and therefore moves to the respiratory system much quicker.
The most common form of ALS is the extremity onset in which a person has involvement in a foot or a hand first and it takes longer to move up to the respiratory system- but it definitely takes away more abilities from the person suffering from the disease.

Take care

 
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