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New member
Oct 19, 2006
old bridge
My name is Nancy and my dad has ALS and has had it for 11 years. My mom
has been his primary caregiver for all that time and about 4 months ago she
and my dad had to move in with me and my husband and two kids so that
we can help her somewhat with my dad's care. This is difficult at times since
both my husband and I work full time. We can help her at night and on the weekends
which is o.k. I guess since some weekends she just really needs to get out. Anyway
my dad is completely bed-ridden and he cannot speak or move at all. We have to turn
him all the time. He is in a lot of pain now and he was just seen at the clinic for ALS
in Philadelphia. My dad has asked the doctor to help him and my mom end this
misery. I always thought of my dad as the tough iron worker man but now he
is so feeble. I am a medical assistant so my mom feels I am so hardcore about
the reality of this disease when in fact I so many times cry alone and wonder
what it must be like to be in his sad he is. Hospice will now be coming to
my house to make him comfortable. What is comfortable? Really. Anyway, I really
just want to clear my thoughts and I am sorry if I upset anyone. All my best wishes
to all of you with ALS and to your families and caregivers. GOD BLESS!
thank you!

You are doing what i hope my son can do, and are handling it in the manner you are doing so now. Have faith, stay strong and I, for one, appreciate your opening your home and careing 4 mom also.
Hello NED,
My name is Donna and I am from New Jersey my husband was diagnosed a few months ago and has went down hill quickly. I understand about crying alone.. I do it all the time. You thoughts and feeling can not upset anyone we all are going thru this together.
The purpose of this forum is mostly support. If you need to laugh,cry or just tell us how you feel today or any other day it is alright. We do care. AL.
cherish the time alone

hi NED.
(NED are my initials!) anyway, my advice to you is to cherish your time alone. when you cry and think all the things you don't want to say outloud. it's your own personal time and space when you cannot be wrong in how you handle ALS. how you feel about ALS. what you wish would happen. it's all about you and it's very important to be in touch with yourself and your own feelings while dealing with this terrible disease. you need to know how to keep yourself strong. i find it very comforting to sometimes just close the door and lay on my bed for 5 minutes and focus on ALS and my aunt and what i am afraid of etc. i don't have to try to explain all these emotions (which are impossible to describe to most people). i don't have to hope someone will say the right thing. i don't have to wonder if i am doing enough to help my aunt. instead i can just spend time within myself to feel free to think and say whatever i feel. and let it out.
then, of course, you also use the love and support of family and friends around you to get through all the other minutes in the day. but those few private moments when you can truely put things in perspective and get your head straight make a big difference. it's sometimes calming and therapeutic to cry alone and have little "discussions" with yourself. who knows you better?!?!
i hope your father doesn't suffer and your family finds some comfort in being together through these difficult times.
and lastly, eat more ice cream. when all else fails, ice cream always makes the tears go away.
love nicole
Hi Nancy. Please don't worry about upsetting anyone right now. It really is all about you, your family, and your patient right now. This is a great space for finding out that, first, you are not alone and second, somebody who is or has gone through the same thing might have a tip or two for coping. Myself, I like the ice cream idea! Our thoughts are with you and I hope you can do something nice for yourself this weekend.
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