brother w/ als

[loretta]

hello to all....my brother was diagnosed, after a long period of drs visits and so on, with als. he is confined to a wheelchair, he does have a feeding tube, his speech is gone.....but, he has the fighting spirit. they have told us he is in his "last leg" of this race, he has been fighting for 2 yrs now, the disease seemed to take over very rapidly. his wife, my family have somewhat accepted this disease, but, to be truthful, my parents are taking this very badly (as expected) and they are, at times, making a horrible situation much worse. they are in the anger stage of grief, and they are fighting everyone. my brother's wife is handling his care and making sure all angles are covered, however, when my parent's ask for updates, they don't want to hear them. this is starting to put strain on my brother, he can not get his message out to them and when we try to talk to mom / dad, they won't listen. my brother is hanging in there, but, i am afraid for him and the added stress this is causing. my parents are in the mid 70's, i worry about their health as well. there is a grandchild as well, and although she is only 12, she is very much aware of the fighting and it is causing strain on her as well. how do we get past this stage of grief and get our parents to start enjoying everyday with my brother? i fear they are letting precious time with him slip by. he needs us all to be strong, i just don't know how to get my parents there? can someone help or give some advice.

 

[hopingforthebest]

ALS social worker

Dear Loretta:

So very sorry for your brother. My husband's sister is also Loretta, so your post caught my eye.

I have no advice for you but if your brother is on hospice care for issues, they also have a social worker assigned to him. He/She can be of great help with family members. If not, maybe a church pastor etc.?

Good luck and keep us posted on things and I will say a prayer today for your parents broken heart in dealing with this stinking disease that has affected their son.

You are a wonderful caring sister! :razz:
Patty

 

[KeeKer]

Hi Loretta, My brother had ALS too. My parents lived next door to him. They are 84. My dad has just shut down and sleeps alot. He also has Dementia, so some days he remembers Wes is gone and somedays he asks where he is. He has macular degeneration so don't think he could really see how bad it was, but it still depressed him to see Wes. In the end he didn't go and see him for the last few months. My mom went every day and drove Wes crazy! She is very angry! They are fading a little more every day. Wes has been gone since November. Can't imagine what it is like to loose a child!
I don't know what to tell you. Everyone handles grief their own way. It is hard when they deal with anger. With this horrible disease though you get to grieve twice.
Colleen