Hold on Tight...

[ThisPresentMoment]

My heart is with you Lenore.

 

[Lkaibel]

Nurse was here. Brian’s 02 saturation actually went up to 84 percent even with Oxygen off. Nurse thought it was because of the major increase in Oxy.

 

[JimInVA]

<big hugs>!

 

[affected]

With you every moment Lenore - I see the place you have come to and it is the best place to be in this moment. You are amazing.

There is no max dose, you give to comfort, they won't check and don't write down what you give and when. Just keep him in that place of comfort all the time. Doses are meant to be titrated upwards. Huge hugs, the storm is outside but you are with your man in the most important place xxx

 

[Lkaibel]

In my final post today, I’ll say something that may surprise those who have not experienced this:

At the point where the person who is dying is sleeping constantly, the watch becomes downright... dull sometimes. Highly insensitive, right? Well, thing is I think if I was getting super emotional consistently now I’d be ready to hurl myself out the second story, so my mind protects me from that.

Lots of sitting, a little medicating. Some strokes and soft words and small kisses. Don’t get me wrong, it’s great and valuable stuff, but “Love Story “it’s not.

Odds are at least as good as not I’ll be asleep or washing a dish when he actually passes. That’s okay, we’re good now.

 

[MarieLaure]

This makes absolute sense.
Love to you Lenore

 

[affected]

I get it - movies have a lot to answer for ...... the tedious business of reality is something else indeed. holding your hand still xxx

 

[kitkat]

Thinking of you both and sending hugs.
Kathy

 

[affected]

Holding on tighter than every Lenore xxxxx

 

[Lkaibel]

Pulse still is 140’s, breathing steady after a big attack of wet breathing with grunting sounds last night. I did the dry up drops and also the grunting has stopped.

He is no longer reactive to sounds and much, much less reactive to being moved around. If his eyes open slightly they look as though they see nothing.

I did take the time today to change his diaper (output is near nil now, but still cleaner) and I put body lotion all over him. I cut a nightshirt up the back and put it on him. Poor guys diaper is fully covered under the sheet/blanket in the first time in forever. I even dry shampooed his hair and put his wedding ring off my hand and on to the tip of his left thumb. I am using chapstick and rubbing Lavender oil on his nose because he always liked it. If it were possible, I’d dress him. It’s like I want to give him his old self back before he goes. Here- take the real you with you. Of course, that’s exactly who he will be again when he flies free.

Nurse said it could be anytime, but I am thinking it may be a bit. His heart is strong, his 02 saturation is still high 70’s. He’s been 84 hours with no food or fluid, but done last many days or weeks.

People kindly keep asking how I am. I say this is so much more peaceful than what we have been through, particularly in the last 1.5 years after the Radicava debacles seemed to intensely speed his progression.

Now THAT was a jolt, going from him walking up stairs and going to PT and swimming to losing his legs overnight. I’m still glad for the time we had. Until about Christmas a lot of it was good time.

Yet, it says a lot about ALS I think that my watching someone I love more than I thought I could love anyone die seems peaceful compared to what we went through.

A friend send me cheesecake and chocolate covered strawberries. The nurse was here today, and I’m doing laundry. My house is getting shoveled out after the storm. Dishes are washed (yes heartless beast that I am
I’ve been eating!) Praise be no one else has tried to visit. Now for some more Netflix.

 

[affected]

You are a most beautiful CALS Lenore.

I get so much of what you wrote from the experience I had with Chris.

xxxxxx

 

[wishmobbing]

Lenore, good to hear you're eating (especially those strawberries)! I had to laugh because of the dull part. Movies are rarely good representatives of life. Especially with dire subjects the incredible irony of human thinking gets cut short.
I had a near slapstick episode hours or minutes (it gets a bit hazy) after my PALS passing when I tried to make sure his eyelids stayed peacefully shut before his family's arrival. It cracked me up some.
Never deny yourself humanness. We can't have one feeling for days, we can't stay in one mode forever. And that's a very good thing.

Hugs!

 

[KarenNWendyn]

Still walking with you and Brian.

You’re doing great.

I also thank you for sharing your experiences and feelings because it has helped me get insight into the path my CALS and I may take.

 

[affected]

There with you - I've been travelling for a client all day and you have been so high on my mind xxxx

 

[pittsburghgal]

Lenore, thank you so much for sharing this with us. You and Brian are in my thoughts and prayers. You are an amazing CALS.

Sharon