Smothering in Sorrow

[christys]

Hi, my name is Christy and my mom, age 59 was diagnosed last month with ALS. We have been thru so much in the past yr (ruling out everything else) and things seem to only get worse. There are so many things that i want to talk about but I can't find a starting point. My mother is unable to move her arms and legs. She has, up to this point, lived at home and had a sitter for 4hrs a day and her niece at night. This is NOT working any longer. I am a hospice nurse and know (medically) what is going on, but the daughter is lost.....I live 1 1/2 hrs away from her and i am married w/3 kids. Currently she is in the hospital with a UTI and they are discussing discharge to a nursing home. I feel as if i am smothering with sorrow. I can't imagine sneezing and not being able to wipe my nose. I can't imagine my head itching and not being able to scratch it. I can not imagine such a robbery of her independence by this disease and i am thankful for finding this forum.

 

[Bobby C]

Christy, you will find empathy, sympathy and solace on this website. Many others have gone through the trial you are going through. I am lucky. I have PMA, one of the motor neuron diseases, but it progresses much slowoer than ALS. But my prayers are offered for you. I hope this helps a little bit.

 

[Paty]

christys

Welcome to our forums Christys:

So sorry about your mother; I lost my husband to ALS last Dec. 30th, he was 58 when he died, after two years six month's struggling with this terrible disease.

I fortunately found these forums were I found everything I needed to help him and myself, as everybody here knows I consider this place My little house on the Prairie.

Remember everybody here is always happy to be able to help, hear and confort everybody, we are like a family.

Love

Paty
Cals to late husband Jorge
Dx 10/17/05 Died 12/30/07
Baja California, México

P.D. I still hang around although not as much as before, since I am babysitting for my
daughter.

 

[brooksea]

christy,

I am so sorry to hear about your MaMa.

I am not familiar with TNs rules and regs. You being hospice nurse - does she not qualify for hospice to come in to your MaMa's home?

Is ALSA involved?

Christy---YOU GET A HOLD OF YOURSELF GIRL! Don't you get down just because you've seen what happens to others. This is your MAMA! She isn't the others!

Maybe you need to contact the ALSA or the ALS Clinic your MaMA goes to and speak to the social worker!

Shock of diagnosed makes us all feel helpless at first, but you get over it and get the will to fight!

 

[CindyM]

Hi Christy. I am sorry to hear about your mom. It might be worth doing some research to see if she qualifies for in-home CNA care. But if she really must go to a nursing home or assisted living facility can she find one closer to you so you can keep an eye on things? just a thought...Cindy