scared

[CindyM]

Hi Anna-The fear, loss and grief can overwhelm both the family and the PAL (Person living with ALS.) Even the most communicative of families needs expert advice sometimes. Maybe a social worker at the ALS clinic can get the ball rolling? This is my first quess but I bet you'll get other ideas as well. This is a really caring and supportive group of folks on this forum so i am glad you decided to join us. Cindy

 

[brooksea]

justb,

I am very sorry your mom seems to be progressing so fast. It seems that the worst things happen to the nicest people. I know this is very difficult for you. It would be hard to give a time table for your mom, since this disease can sometimes move fast and then plateau. I hope that will be the case for your mom, that she will plateau. It's OK to feel angry. The gambit of emotions that a CAL and PAL go thru is a long list. Some turn to God and some turn away. I hope that in time you can find peace. Please let us know how you and your mom are doing.

 

[brooksea]

blessings,

Cindy is right, ALS is overwhelming. The shock of diagnosed and then the decisions that must be made in order to just live are more than any one person should have to handle.

I don't exactly know what you mean by family can't communicate, but I will tell my experience. My PAL has to much pride to accept help from his family and we really need it. I am close to my SILs so we are slowly devising ways to get around his issues. I can only suggest that maybe you send a card with a detailed expression of your desire to sincerely help - with specifics about how you would help. Some people tell you "let me know if you need any help," but you know they don't really mean it. Emotional support will be difficult and it helps if everyone involved can keep their sense of humor. If you could find out exactly what you PAL needs, some little something, and perhaps get that for them to break the ice. Then you might be able to open the line of communication with them. A lot of times PALS become isolated because friends trickle away, as things become more complicated with the disease. So, I would venture that if not sooner, then later your PAL would welcome your support.

 

[Debohern]

Hi justb,

My heart goes out to you and your family. I, too, don't think my mom deserves this either but then who does? This is a horrible disease. My mom was diagnosed yes and no ALS so we are still unsure but, so far, isn't progressing as much as your moms. I sometimes think my mom has had it for longer than this year but that it was exacerbated by my sis's death, my uncle's death, mom's own mastectomy, etc. She, too, has had heart surgery, and her feet and lower legs are blue too. I will watch your posts and keep you in my prayers. I understand your feelings with God but try not to give up on Him.