2 weeks ...

Well exactly 2 weeks ago is when my mother was first diagnosed with ALS and now today they referred her to home Hospice.

We went to the ALS clinic for the first time Tuesday where my mother seen her Neurologist, Pulmologist, Speech Therapist, Physical Therapist and Occupational Therapist.

We found out that she only has 30% of her lung compasity and is supposed to be getting a cough assist machiene and another one she will use at night then eventually during the day also.

I can't believe how fast this disease has progressed, in two weeks our lifes have just been flipped upside down.

it really stinks and i am sorry you and your mom and family are going thru all of this.

When you tell someone what has happened they always say "Im sorry im here if you need anything" well I do need things, but they are not things that anyone can do for me, I guess their things only time will heal ...

What do you need? Is there anything that I can do to help you?

Such a lot to deal with in such a short time... prayers for peace to settle in around you and your mom.

Don't be frightened by the order for Hospice. Three weeks ago I was rapidly decling and Hospice was started to help me. I saw my doc this week and she was so surprised at how good I am doing. The Hospice aides and volunteers have been a big help and I am feeling stronger and my caregiver is less stressed. My quality of life is much better.

If Hospice is available - use them - and they will not only help your mom but will know exactly what you need even when you don't know. Honest.

((Hugs)) and prayers for you and your mom,

Diane

OK Diane ya beat me to it! I was about to say... do NOT be frightened by the hospice referral. Those hospice people will become your lifeline... a chance for a break, a chance for your Mom to not feel so dependent on you and therefor to retain some of the dignity this disease strips away. You have a lot to take in... don't feel you have to grasp it all immediately.

4mymom, I just saw your post from yesterday. I'm very sorry that your mother has had such a fast beginning in the disease. Let others do whatever--cooking, shopping, sitting with your mother. I hope you are able to spend some time just being together, without your being in caregiving mode. If you want more privacy, ask them to just bring in and put groceries away, or put food in the fridge, but not stay to chat.