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Old 03-29-2012, 12:37 PM   #1
Join Date: Mar 2012
Location: Wildmar, Ca USA
Posts: 5
Sidekick4ever HB User
How to say goodbye when brother won't face dying


My brother was diagnosed 5 years ago, almost to the day, with ALS. He recently has taken another turn for the worse. I just went to visit him. He is scared and terrified to die. You can't discuss it with him so I am left feeling like I can't say the things I need to say to him.

He has never denied he has ALS and he has known it is terminal. Our family has never been able to discuss it with him because he has never come to terms with it. He has refused so many things that will help him with his care. It makes it difficult for him and his caregivers, which are my sister-in-law and my Mom.

We have had a lot of laughs and good times over the last five years but I only pop in for visits. He has been mean and hateful to my family (daughters, mom , sister-in-law) angry, mean, physical (he tries to run them over with his wheelchair), calls everyone ugly names in his barely understandable voice.

My family thinks he should be kind and except his disease, make peace with it. Hospice said they deal with no other ALS patients this difficult. I know there has to be similar stories out there. Nobody came be trapped in their own body and be happy go lucky. I do think he is extreme but not the exception. I would be interested to hear from others that have similar stories.

Last edited by Sidekick4ever; 03-29-2012 at 03:34 PM.

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Old 03-30-2012, 03:11 PM   #2
Join Date: Mar 2012
Location: Waterloo, Iowa USA
Posts: 2
PFQC Advocacy HB User
Re: How to say goodbye when brother won't face dying

Say what you need to say in a letter. He may never read or hear the letter, but it will help you say what you need to say. You can just hold onto it, give him a copy he can choose to read (or not), share it with his wife or another family member, or have it buried with him. Writing it will be very therapeautic for YOU.

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Old 03-30-2012, 04:29 PM   #3
Join Date: Mar 2012
Location: Wildmar, Ca USA
Posts: 5
Sidekick4ever HB User
Re: How to say goodbye when brother won't face dying

Thank you.. I wrote a poem and he read halfway through it and started to cry, he never finsihed. I email often and my sister in law said he reads them but he never replies. He said it is to stressful on his eyes (to type with them). I still don't discuss dying just how much I love him. I will take your advice and write a letter. Like you said he may never see it but I have doubt he knows how much we all love him & know he loves his lil sis.

Thank you so much for responding

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