New CALS new to Forum

Kellyb40 · 07-03-2012, 01:19 PM

Hello all, just a quick intro. I have recently become sole caregiver to my Mom who was diagnosed this past January (about 2 years into it). Feeling overwhelmed after only 3 months, but happy to see that there is a supportive community. I have briefly read some posts and learned so much I didn't know

HelenL · 07-03-2012, 03:56 PM

Hi Kellyb40, sorry that you had to be here, but welcome to our forum family... there is so much to be learned from each other here, it is truly my lifeline. Feel free to ask questions, post concerns, rant, laugh, rave, you name it, we're here on this journey of ours. Good luck, and remember to reach out to others in your "real" life as well, don't try to do it yourself.
Helen

WellsRuby · 07-03-2012, 03:59 PM

I'm pretty new to the form myself but there are lots of helpful and caring people here to support you and answer your questions. I have found good advice and comfort on this forum.

Barbie · 07-03-2012, 04:14 PM

Hi Kelly,

Welcome--feel free to ask questions, we will all support you.

Kellyb40 · 07-03-2012, 05:37 PM

Thanks y'all. Hopefully this won't be my first and last thread. I have been sitting in a hospital with her for the last 2 days watching her deteriorate before my eyes because I admitted her through the ER for pneumonia. As soon as I said ALS the staff gave up and have barely treated her. She has been given antibiotic and very little saline to rehydrate.

She has so many medical issues with her heart. After 2 previous heart attacks, she has only one artery working at 20%. this is what should have killed her. Yet she fought on, only to be diagnosed with ALS.

She is stubborn, her sister died from ALS 35 years ago and she knows what is ahead. She refused to agree to a feeding tube right away, for reasons she won't give and as of this weekend can no longer swallow at all to even take her meds. I had to raise Hell to even get assistance from the staff at this hospital and they have finally offered an NG tube to at least get her heart meds and nourishment to assist the antibiotics in healing her this round for a feeding tube.

Just from reading a few posts the last 2 days, I am amazed at all the aids available and am angry that I didn't know what was out there. Some of this is on me because I hadn't researched, but being in a hospital where they won't fight with and for her, that is unacceptable.

brooksea · 07-03-2012, 06:05 PM

Hey, Kellyb40. Sorry about your mom. Welcome and feel free to ask any questions you may have. We will all try to help in any way we can.

joni51 · 07-03-2012, 10:51 PM

Welcome Kelly, so sorry you are going through this too, if I can help please let me know.

ruthiep · 07-03-2012, 11:35 PM

Hi Kelly, sorry you have to join us, but please know that you've come to an amazing forum. The comfort and wisdom you'll draw from the members is amazing! Hugs and peace to you!

Ruth

John1 · 07-04-2012, 07:18 AM

Hi Kelly, you sound like a fighter. That's a good thing with this disease because, as you are learning, most of the medical system is woefully ignorant of the needs of PALS. I behooves us to plan ahead and insist on the right treatments and equipment to mitigate the worst effects of ALS.

I hope your mom is a fighter too and beats the pneumonia.

rachelg · 07-04-2012, 02:37 PM

Hi Kelly and welcome. Sorry you have to be here. Loads of help available here.

vzandt · 07-04-2012, 03:51 PM

Hi Kelly, welcome to the forum.

momap53 · 07-05-2012, 11:16 AM

Welcome to the forums, Kellyb. I'm so sorry you're having to deal with a hospitalization for your Mom. Keep advocating for her!

lovedbygoldens · 07-05-2012, 12:51 PM

Kelly, welcome to the forum. If you haven't done so, please contact your local ALS Association and get some more info and assistance on providing quaility and qualified care for your mom. They are your best resource!

Keep in touch! Hugs.

sallyb · 07-05-2012, 01:05 PM

It's so difficult Kelly. I'd just like to a) echo the suggestion to seek support from local association/social worker & b) say DON'T beat yourself up, it is a steep learning curve & it is NOT "on you"/your fault at all. It sounds so difficult, am trying to think of what to say... I guess if you can establish what your mom wants (which may be very different to what the hospital wants/thinks is appropriate) is the key? so it is keep her comfortable but not manage aggressively/treat this infection/NG for a period & then make decision re PEG? I know it is doubly hard for your mum since she knows what is ahead which can only make it harder to roll out of bed in the morning - takes so much courage (similar situation myself). I'm sure some other members have more intelligent suggestions than me but I hope you get through this. Make sure to look after yourself. God bless.

rachelg · 07-05-2012, 02:40 PM

[Welcome Kelly - twice - so very welcome