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birdseyebk

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ny
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forestville
23 years ago when I was 24, I took care of my 72 year old grandmother during the last year of her 2 year struggle with bulbar ALS. I still remember the day I moved in with her,a bitterly cold, winter day,Feb.21st.

Sometimes I remember it like it was yesterday.
I can still see her smile and her laugh without sound.
I have no regrets about my time with her, I am grateful that I had time to know her and love her.
Sometimes it was very hard, I wasn't with her when she died. I wanted to be with her. Guilt followed me for over a year.
I learned great empathy which has over the years helped me to take care of others that I love and have lost.
I've learned that painful loss has helped me to feel deep love.

To all out there.... from someone who doesn't know you, but in a way does know you.
You are a good person, stay strong and be kind to yourself.
 
Your words touched me...

Thank you for your beautiful,caring message. One of the hard things for me is leaving my grandchildren behind--not getting to see them graduate, marry, etc. Then I realize how blessed I am to have them & know their lives will be a part of my legacy. May they have your sweetness & compassion. God bless you!
 
Very nice sentiments. Glad you found us and could share.
 
more thoughts after 23 years

Thoughts about my grandmother's struggle living with bulbar ALS surfaced because I just finished listening to the book on CD, Lou Gehrig, The Luckiest Man Alive.

After reading some of the posts, all kinds of thoughts ensued. 2 are:

Why is it that this horrible disease discovered in 1869, has taken away countless lives since to include, Gehrig's in 1941, my grandmother's 43 years later in 1984, and in 2006 nothing has changed? 137 years. 137 years.


To take my mind away from the anger and frustration I feel from that thought I remember a funny incident I shared with grandma so long ago. I had been living with her about 6 months, it was summer, very hot. I was wearing a bathing suit top while weeding the garden ( I'm still weeding the same garden, the weeds are winning, in fact when someone asks what kind of flowers I grow, I always answer "weed avarious") Anyway, grandma came out to see me and took off her blouse. (She had lost her ability to speak months before I came but was ambulatory) I quickly helped her put her blouse back on while thinking she was just hot too. As fast as I could put it on her she took it off, 3 times. Ok, I thought she wants to be like me and wear her bra like a bathing suit. I helped her inside and went to get my other bathing suit top for her. When I came downstairs, grandma had her blouse off again and was fiddling with her bra strap. A hugggge lightbulb went off in my head, her strap is broken! I fixed it for her and she put on her blouse. While holding her hand I said, "Grandma, do you think that I am an imbecile?" (this 24 year old college educated grandaughter) Her round blue eyes lit up and this huge grin formed from ear to ear while she nodded a resounding YES! There could be no misunderstanding of her response and my embarassed agreement. I think I kept laughing at myself the rest of the day. My grandmothers reaction to my question is still one of my most precious memories. Why is it that in your 20's you think you know everything?

HHH
Humor Helps Heal
 
Hi birdseyebk
Thanks for sharing your strory with us! I have had bulbar ALS for over two years, with my husband as my caregiver. He has not quite figured out the bra thing yet either!
You are right, humour is wonderful in keeping us going, helps the frustration and, you can't be angry when you are laughing!
Hugz and prayers,
Leah
 
birdseyebk said:
Thoughts about my grandmother's struggle living with bulbar ALS surfaced because I just finished listening to the book on CD, Lou Gehrig, The Luckiest Man Alive.

After reading some of the posts, all kinds of thoughts ensued. 2 are:

Why is it that this horrible disease discovered in 1869, has taken away countless lives since to include, Gehrig's in 1941, my grandmother's 43 years later in 1984, and in 2006 nothing has changed? 137 years. 137 years.


To take my mind away from the anger and frustration I feel from that thought I remember a funny incident I shared with grandma so long ago. I had been living with her about 6 months, it was summer, very hot. I was wearing a bathing suit top while weeding the garden ( I'm still weeding the same garden, the weeds are winning, in fact when someone asks what kind of flowers I grow, I always answer "weed avarious") Anyway, grandma came out to see me and took off her blouse. (She had lost her ability to speak months before I came but was ambulatory) I quickly helped her put her blouse back on while thinking she was just hot too. As fast as I could put it on her she took it off, 3 times. Ok, I thought she wants to be like me and wear her bra like a bathing suit. I helped her inside and went to get my other bathing suit top for her. When I came downstairs, grandma had her blouse off again and was fiddling with her bra strap. A hugggge lightbulb went off in my head, her strap is broken! I fixed it for her and she put on her blouse. While holding her hand I said, "Grandma, do you think that I am an imbecile?" (this 24 year old college educated grandaughter) Her round blue eyes lit up and this huge grin formed from ear to ear while she nodded a resounding YES! There could be no misunderstanding of her response and my embarassed agreement. I think I kept laughing at myself the rest of the day. My grandmothers reaction to my question is still one of my most precious memories. Why is it that in your 20's you think you know everything?

HHH
Humor Helps Heal


Hello,

I too had a very wonderful grandma that has passed away. Your story brought back many wonderful memories of her. Thanks for sharing your story with us. Sometimes i wish i could ask her what i should do next. She always seemed to have the right answers to life. A more loving kind hearted women than her does not exist. I do miss her alot.
Keep smiling, and come back and visit with us again soon.

Love and Prayers
Marlo
 
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