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[amysgraphictees]

Hi, My mom at the age of 55 was just told 5 months ago that she has ALS. It is moving very rapid. She went from a drop foot at christmas to not being able to walk to not being able to use her right arm and now this week I was told that she had to go see a lung spec. and he has put her on a machine that she has to use at night to regulate the co2 in her body. And he wants to see her in a month. To top everything off I am an only child. And my mom has been single since I was 6. And boy is she hard core at sometimes. I am very close with her and I try to be very positive. But sometimes this is so hard. It is all left up to me. And she will not I mean not come and live with me. I have two small girls and a business to run. How can I keep myself okay.
Amy

 

[BethU]

Amy, that's a dreadful situation. I am so sorry that your mother has this diagnosed ... and that you have this load to carry.

With ALS progressing this fast, your mom is going to need full-time care pretty soon. If she won't move in with you, her only other choices are going to be a care facility or hiring someome to stay with her.

Have you registered with ALSA (ALS Assoc.) ? It was the ALSA rep who talked sense into me after I was diagnosed. She surveyed my house, and discussed finding caretakers, and the problems of wheelchair access, all the while I was thinking, "I'm not going to need any of that stuff. She's nuts." If you can find someone else like an ALSA rep to weigh in and explain to your mom what she will be facing, perhaps it will help convince her to move in with you.

I hope your mom comes around soon. Denial works for a while, but with ALS, at some point you have to face reality and get your life in order.

I really think that caregivers get the worst of this disease. Hope others will have suggestions for you.

Take care.

 

[CindyM]

Hello Amy- how are things today? I hope we will be able to help you, as you have a lot on your plate. Cordially, Cindy

 

[amysgraphictees]

Thanks You guys for replying so quick. Over the weekend she has decided to get more help. This thursday I take her to Pittsburgh for a consultation with a doctor that is going to put a feeding tube in. Even though she does not need it right now they think it is best to do. I do not understand why this is moving so fast. Just last night I noticed when I lifted her up she could not get a good grip around me and it was a little harder to lift her.
No, I did not register with the Als Assoc. I did not know about them. I will have to check into that. What I do not understand are why are these doctors are telling people the is hope. I understand that you need tobe possitive. And I feel for anyone that has this, My heart goes out to anyone.

Amy