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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 08-08-2010, 06:48 PM   #1
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Unhappy what do I say to my 2 toddlers

My 32 year old husband has had ALS for 6 years. He is in the advanced stages now and Dr.s say not much time left. We have a 4 1/2 year old daughter and a 2 1/2 year old daughter. I don't know how to explain to them what is going on with their daddy. How do I explain it to them when he is gone? I don't even know if I could cope with it so how do I help my children?

 
Old 08-10-2010, 04:55 PM   #2
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Re: what do I say to my 2 toddlers

I wish I had an easy answer for you, but I don't. I just really feel for the situation you are in. This is a horrible disease that affects everybody involved. I lost my mother this past january. My kids were very close to their grandma. I had to leave home and move in with her to care for her. They would visit grandma and I everyday. They watched the disease from start to finish. It was not easy for any of us. My kids are a little older 9 and 5, but it was a bad situation no matter what age.

My only advice is to surround yourself with family and friends. Seek counseling for all of you. Know that you are not alone. You will have to find a way for yourself to heal and be there for your children. No that your husband will eventually be free from all of the suffering. I wish you strength and love. Take care of yourself.

 
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Old 08-27-2010, 11:27 AM   #3
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Re: what do I say to my 2 toddlers

Do you have access to Hospice? They might be able to provide some help for you. I know cases where they have.

God bless you and your family.

 
Old 08-28-2010, 03:25 PM   #4
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Re: what do I say to my 2 toddlers

I actually have first hand experience with Hospice myself...its a wonderful way to get support. The Social Workers should be able to help you find community resources for helping you to talk to your children and see them through this. BUT as a caretaker, you absolutely have to remember to take care of YOU, too. The entire Hospice team should be there to help you cope and help you with the transition which is happening.
So sorry for your having to go thru this...
N
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RRMS- dx 05

 
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