Okay, time for the tough question...

lovedbygoldens · 05-08-2012, 09:10 AM

What happens next?

We had mom's ALS clinic appointment yesterday. All in all no surprises but we all walked away confused and lost so I am turning to you for your input.

Mom has been using bi-pap and O2 at least 23 hours a day. She is only off long enough for transfers (pwc, bed, toilet, shower). According to her husband and primary CAL, the machine is doing 100% of the work for her at night. Hospice has been involved since December and her pain, air hunger, etc is all being managed and is under control. She has a foley cath, feeding tube (4 cans a day + meds & water).

At her appointment yesterday, the SLP had a chance to check out her head mouse setup with the loaner dynavox machine since speech is almost completely gone.

In addition to all of the above, the biggest blow was finding out her FVC is down low enough it cannot be measured at all to very little accuracy. Basically, the RT guessed it was maybe at 4% of predicted. While we knew this was coming, it was still hard to hear.

I should also add her CO2 level was a 60, so her bipap was adjusted. O2 is still good (in the low 90's).

My main question is what happens next? What could get worse, what does the future hold and what can we do to keep her comfortable, dignafied and at peace?

I have accepted our fate and only want her to get what she wants. Mom is a non-vent and is speaking more and more about death and dying (in a healthy way). I think she is still grieving (I know I would be) and I know above all else she is just exhausted.

Thank you for listening/reading and any insight you provide. I know it isn't easy for our PALs, I just guess I'd like to know what to expect from here and what I can do to help. We live a couple hours away but visit almost every weekend so she can see the boys.

Sorry for the ramblings....peace and comfort to all!

HelenL · 05-08-2012, 03:25 PM

I'm so sorry that your Mom has progressed so much already... I wish I could help you with some answers, but don't have that experience... yet. Please know that I'm thinking of you and your family.
Helen

Barbie · 05-08-2012, 03:35 PM

It sounds like you are doing all you can--you can not change the inevitable. Keep her comfortable, give her what she wants, and make peace with the future. Bless you and your mom and dad!

kiwisally · 05-08-2012, 03:47 PM

It sounds like you all have done everything that can be done to make Mom as comfortable as possible. All I can suggest, for you both, is that you spend as much time with her as you reasonably can and just hold her hand.

momap53 · 05-08-2012, 04:01 PM

All good advice. Just spend time with her and love her. So sorry you're facing this so soon. Our thoughts and prayers will be with you.

If you'll check the archives several CALS shared their end of life experiences

cervus · 05-08-2012, 09:46 PM

Sounds like you are doing everything you can - your mum too. In our experience, once the BiPAP had to be adjusted a couple of times in as many weeks, our RT told us we were getting close to the end. She told me that on the phone - didn't say that in front of Bob. Bob's last FVC was very low but mostly because he couldn't close his lips over the mouth piece. His sniff test after that was at 39% - under that is determined as the "terminal phase" of the disease - again, that's what we were told and I've heard otherwise on this forum. As has been said, be with your mum and keep talking to her until the very end. Hopefully she's not there yet but when it does come to that, even if she seems like she's in a "comatose" type phase, keep talking. They can still hear. So sorry you're all going through this. Yasmin.

Toto's Dorothy · 05-08-2012, 11:30 PM

Golden,

I agree with those above. Being there, holding her hand and talking to her are the best advice I would give. I will be praying for your family. You are a wonderful daughter and I'm sorry that ALS has entered your lives.

Many prayers and much love,

Danijela · 05-09-2012, 04:16 AM

As other pointed out she seems to be getting a good care, appropriate ventilation and nutrition.

There are PALS out there who have held out on NIV 24/7 for couple of years or even longer (see Patients Like Me). Some people get a respiratory infection and this is what eventually leads to an end, others pass peacefully in their sleep. Some up the intake of O2 and morphine which eventually depresses what is left of respiratory function.

You and your mum are in my thoughts. Dani

lovedbygoldens · 05-09-2012, 08:15 AM

Thank you everyone. My dad passed away almost 7 years ago after a very valiant fought battle with stage 4 colon cancer. My mom remarried just 3 months before her diagnosis and her husband has taken exceptional care of her. Hospice, family and friends have all been great, I can't be thankful enough.

I have always said Cancer Sucks and now have added ALS Sucks, too!

Peace be with all of you,
V.