Just need to talk about it.

• By greensmile
• Posted October 28, 2008 at 6:49 am
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hi cmf88
i understand your feelings,fear,and inability to go to your grandmothers house,but you're not alone in this.i have a.l.s. and the one thing most needed is some-one to talk to,and encouragement.i've had this disease since the early eighties and am on the vent now 13 years and use a power chair.i continue to work and am very active.in other words-life goes on and it goes realy well.you're welcome to write me and i'll be here to help as best as i can.remember,you're not alone,and above all never ever give up hope,and keep the faith.
hugs and smiles :) :) :) :) :)
shoshanna the green smile:)

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• By purplefry
• Posted October 28, 2008 at 6:12 pm
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CMF88,

I have just recently joined and can completely share what you are feeling. My Mother is only 63 and was diagnosed in March. She has been by herself for years and has worked very hard as a nurse her whole life. She finally retired in 2006 only to end up with this. She has been affected mainly in the arms and hands. It has progressed the last few months and she is now in an assisted living. She can barely feed herself anymore and last weekend was the first time I had to help her shower, that was really hard to take. I don't know why this is happening either. I am a believer and I believe everything has it's purpose and reason. It is extremely hard to see my Mom like she is, helpless. Hang in there. Spend as much time as you can with your Grandma, even though it is hard.

Talk with you again,
God bless you and your family,
Tracie

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• By RochesterBarb
• Posted October 28, 2008 at 10:37 pm
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Dear CMF88,
My sister got ALS just before retirement, 4 years ago. Everyone's case is different; some people go very quickly without losing all of their abilities (like my uncle; he never lost his ability to eat or breathe before he passed on), and some live a very long time. A lot depends on where it starts in your body and how quickly it progresses. My sister's started in her leg and she lived almost 4 years, but although we were able to give her her wish of her staying home until the end, and even though she passed very peacefully, not gasping for breath, my one regret is that I was not able to spend more time just sitting by her and listening to how she felt, or just holding her hand and sitting quietly with her. Because she was alone I had to spend my time coordinating her care, advocating for her rights, doing medical paperwork, etc. You don't say how old you are (were you born in '88?), but the most important thing you can do for your Gram is to tell her you love her, that you are so sorry she is suffering in this way, and that you will not leave her. It is a scary disease, and my sister felt guilty for having it. That's hard for us to understand, but the people who had it hate to see what the disease does to their families, as well as to their bodies. Each stage of the disease may scare you (as more and more equipment comes on the scene) but just remember that all of this stuff makes it easier on your Gram to be comfortable. Hug her and cry with her and watch movies with her and maybe you could even make a DVD or video of her so you can have it to remember her by. We made one of my sis for her own grandson (who is only 2 now, but we wanted him to remember her later on), and we were very glad we did it before her voice was affected. (Some people don't get that part of the disease.) And you, just remember that God didn't put disease into this world, but He walks every step of the way through it with us if we will let Him. I would never have made it through without His help, as my mom died during this 4 years of my sister's illness, too. I am 56, but now I'm the only one left in my family of origin: my dad, mom, brother and sister are all gone. I believe I will see them someday again, and I have been given two beautiful twin baby granddaughters during this difficult year of death. My thoughts and prayers are with you. My prayer is also that a cure or new treatment will come along soon. I pray for strength for you as you attempt to show your Grandma how much she means to you.
Love,
Barb in Rochester

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• By Janine
• Posted October 29, 2008 at 8:39 am
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Hi there, My Dad has ALS and has been in at home hospice care for almost 3 years. I am one of his main caregivers. Here is my advice. Just be there for your grandma. Cry when you have to. Talk to her. Let her talk to you. Don't lose your sense of humor. You will amaze yourself with what you can handle and you will be a stronger person for it. If you're like most of us you will learn about the disease and become a fighter against it. You are young to be going through this but it's hard for all of us. Know that there is a community of people out there that are going through what you are. Try to find a support group if you can (ask at the clinic they are there for you too).
This disease stinks. No 2 ways about it. The one thing you can do for yourself and for Grandma is be there. As I've told my dad so many times, the one good thing about this disease is it gives you the time to say the things you always wanted to say. If someone dies suddenly you don't get that chance. Use this time for yourself to say what you need to to her.
Good luck, Love, Janine

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• By SparkUp
• Posted October 29, 2008 at 5:52 pm
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Hi! I'm sorry your family is being affected by this terrible disease. My Mom was diagnosed last year and is in a care home. She has dementia that was caused by the ALS(most don't have that), so is very hard to see her and feed her while she can't communicate. I do it because she cared for me all my life and it's the least I can do. I want her to know that I'm still there for her. She is actually the 3rd person in her family to get ALS. When my Godfather was diagnosed, I never visited him and now I regret it! I'm very emotional and could only think about how I would handle the visits and couldn't get past it. I now know how much it would have meant to him and his family to know I cared enough to spend time with him.
As this disease has continued to progress thru our family, I've focused on learning as much as I can and that has helped me. This group and the living-with-als group at yahoo have been so helpful too!

I know it is hard to think about not having your Grandma in your life. Enjoy her & never let her forget how special she is to you. There will be tears but there will be laughs and good times too! God doesn't promise us any time beyond this moment, so spend time with those you love---don't have any regrets about things not said or done!
Bless all of you!
Susan in KS

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