CALS Roll Call Continued

[Doing My Best]

Mary, so true! For me it is spending several minutes arranging multiple pillows and bed angles to get him perfectly comfortable, then Steve saying he needs to poop. Ahh, well, sense of humor is critical!

 

[Tomswife]

Tom started coughing when i was putting water in the tube! Water water everywhere! Now i tell him "i am opening the valve. Dont cough!" Then i flush and close quickly. Ok cough.

 

[affected]

ummmmm yeah ... coughing and open tubes ....
You also learn, never point the opening towards yourself or PALS as you release the valve, nor while it is open.
Keep a light cloth or towel underneath.
Do a quick 'are you ready' check just before opening. We had that down to simply a making eye contact moment.

 

[Greeneyes]

Could you explain what a care kit is. Thsnks

 

[affected]

Hey Greeneyes - who said care kit? I'm looking for the context but didn't find one mentioned in the last few pages of this thread?

 

[Mary2]

Isn't the care kit what the hospice provides with meds ...morphine, atropine....I don't know what else.

 

[MJT]

Oh Mary, for some reason my eye went straight to the time you posted...

 

[affected]

Mary, yes that makes sense as to what care kit is being asked about!

 

[Tomswife]

Had yet another conversation with Tom about hospice, to make sure he understands I wont be able to call Summit Health doctors unless I revoke hospice. Yes. Understands.
I have been grieving for months, but now I cant even think straight. I went food shopping. I stood in an aisle staring at soda bottles. We don't drink soda. What am I looking for? I am looking for a cure for ALS in the grocery store.

 

[affected]

Be kind to yourself Kathy. This is the hardest thing there is in life.

 

[Tomswife]

Affected. Tillie. I get frustrated and feel helpless communicating with Tom. He refused to use text to speech apps (we have 3 and I have demonstrated all). He writes on a scribble board. But his writing cannot be comprehended anymore. I ask 20 questions, first to get to context/topic. We just spent 20 mins to get to the point where he wanted to listen to a novel by arthur c clark. I read the names of every novel. No no no.
He is now listening to the rest of trevor Noah's born a crime.
I always feel like s..t when i cant understand him. But in the entire list of Clark novels, he said no.

 

[affected]

The brain is affected by this disease. The executive functions very often decline and language functions too.

We communicated by alphabet, photo and word charts.
I had to go very slowly as his response time to give a grunt became slower and slower. (he could manage slightly different grunt for yes and for no)
He lost his ability to spell so the alphabet chart became too difficult to use.
Then he would get yes and no mixed up.

This is part of what can happen. Just like one PALS may lose use of the hands, and another have functioning hands to the end.

It helped me to picture in my head his brain wasting like his body. How could he function normally with that happening.

But yes, frustrating, isolating, sad as all get out. So hard to watch helplessly. I honestly feel your pain. (and Arther C CLarke yes! I have a lot of old well worn loved copies of many of his classics)

 

[Tomswife]

Thank you. He does get yes and no confused. Maybe he meant another author.

 

[lgelb]

In addition to the cognitive changes that ALS can cause, CO2 buildup and fatigue can make decisions difficult, especially among lots of options. I would try playing one of his favorite books. Same for music, movies, courses, museum videos, anything.

 

[MJT]

I'm curious if my fellow CALS struggle with self-care?