My Mom and Dad

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My Mom and Dad

Posted by Donna on Friday September 19, @05:55PM
from the dept.
Hi...I just want Scott and his family to know that as much as you would not believe that any other family in the world would know what life is like with ALS or what it is like to have your Mom diagnost with ALS is like..I DO.
My name is Donna. One of seven children of Marilyn & Ed Battelli of Medford, MA. My Mom was diagnost with Bulbar ALS in 1995 after a cruise to Bermuda with my Dad. She was never sick and then Boom, ALS Our stories are so similar that it is frightening. From loosing her beautiful voice, to not being able to swallow (thus feeding tube) to tripping (and breaking her hip)and thus not moving at all, to a trache..I have been there. My Dad like yours did EVERYTHING for her. We had the same supply room like you do in your living room. But...we all pitched in. We had the best doctors (Dr. Brown being one of them..Let him know by the way that the Battelli daughters said "Hi". Our nurses were like family. Everyone of us learned how to feed through the feeding tube, change the feeding tube, suction through her trache,excersizes...the whole bit. We did through all the saddness have alot of funny moments too. I loved every minute we had with her. She loved being with us all. Sadly 3 yrs into this all my dad was diagnost with lung cancer. He lived for only 6 weeks. We had to now take care of my both parents under one roof. It was so sad. We got to know the guys at the ambulance dept very well. My Mom did not want go on without my dad. I think she thought it would be too hard on us kids. I would have taken care of her forever but her choice was to go to heaven with him. My Dad passed on 2/10/00 and my Mom on 2/12/00 ( she asked to be taken off of life support) They both were home with us kids to the very end. They were waked side by side on Valentines Day. But...I can look into the Heaven every night and smile knowing that I took wonderful care of both of them amd knew that THEY knew it. Your parents sound like my parents were. A very loving family. Your are lucky, some can't say that. I wish you the best and give you parents a hug from me. Tell your Dad that he is doing a Good Job. And tell your Mom you Love her every moments you get.

< I know exactly what you are going thru. | My Dad >

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Re: My Mom and Dad
by Debbie Wewer on Saturday February 26, @09:03AM

Donna, My heart and prayers go to you and your family. How wonderful to know that mom and dad are now in heaven with new bodies and smiling at their wonderful children. My dad is diagnosed with ALS and I know the journey ahead will not be easy. But, I also am inspired by your story and thank you for giving me the courage and bringing a smile to my very sad place within my heart. I pray you are doing well and all the Battelli daughters love one another forever and know Jesus loves you so. Blessings and hugs to you, Debbie Wewer

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Re: My Mom and Dad
by Patti on Monday March 13, @07:08PM

Hi Donna ! WOW - your story is somewhat to similiar to mine ( and to Joyce's) . My Mom became ill in Feb 2000 - she was sick and in Hospice for 8 monyhs. She passed away in Dec 2000.Just 3 months later , my Dad was diagnosed with Bulbar ALS. He was 74 and never in the hospital EVER . He passed away 16 months later. He was in a wheelchair - but he could stand to tranfer from chair to bed. He couldn't speak or eat or drink - I had to suction him just a few times. He died peacefully in his sleep after being unresponsive for 2 days. In that respect we were " lucky " - no ventilator etc... My Dad even had the same Hospice nurse ! Ill parents mean shuffling work schedules , shuffling kids , and being strong. Some one always has it worse than we do. We , like Joyces family, will always know that we kept our parents comfortable and cared for them like they did for us while we were growing up. I think ALS is getting " attention" now that it needs - its a devastating illness and needs a cure. Hopefully , in Joyces time , there will be a cure. That would be wonderful. Hats off to Joyces family , to you & your family ,and all the ALS patients and their caregivers - Thanks for the opportunity to share my story . Patti

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