Overwhelmed

[affected]

so sorry sooner - have they increased his meds to cope? don't be afraid to give him whatever he needs however often xxxxxx many hugs to you, I know you are doing a brilliant job of dealing with what the beast is throwing

 

[soonerwife]

I am now giving him morphine and lorazepam every 4 hrs. Also .5 morphine every 15 minutes when he starts having problems breathing.

 

[affected]

Sooner remember that keeping everything on an even keel is the best strategy - so the 15 minute intervals for breathing help is really important. Also if you get to 3.5 hour and he seems to need more you don't need to watch the clock. Don't even try to keep a strict record of what you are giving - no one will ask for that later.

I hope you are ok in yourself as you are doing superbly there in this most difficult time. Have you got lots of good snacks? I know I couldn't make meals in those last days and just went for really easy to make and eat small things - I made these more about complex carbs and proteins rather than sugars.

 

[affected]

Basically in those last days we reviewed Chris's palliative meds twice a day and changed something about dosage and frequency each time and this was critical for keeping him in a good place. So don't be at all alarmed if your hospice nurse does this, it's really important to be constantly responding to his needs xxx

 

[Narrowminded]

Sooner sending huge hugs and holding you tight thru the net. You are an awesome CAL and you are doing a fantastic job. Even if Cliff can’t tell you, he is so happy you are taking such good care of him.

Hugs,

Sue

 

[Buckhorn]

As Karen stated, I am tring to hold you close in my thoughts and prayers. Love and strenght wished to you.

 

[Jrzygrl]

Sending hugs for your continued strength, Sooner.

 

[soonerwife]

We are still hanging in there. Yesterday was the worst day so far. Last night was fine, got up and gave him the 4 hr meds. His bp is staying lower with the the extra meds we have been giving him.

Lots of food in the fridge. Several things have been brought over.

 

[wishmobbing]

Good that you have a full fridge, probably a good way for friends and neighbors to give support and love. So dig in, I'm sure you could need a little extra energy!

 

[affected]

Sending hugs and much love across the ocean to you sooner xxxxx

 

[Erika]

Thinking of you and praying for the both. May you be given what your hearts need at this time.
-Erika

 

[Narrowminded]

Continuing to hold you tight. Sending many hugs and prayers for much strength and peace.

Hugs,

sue

 

[soonerwife]

Cliff has been resting comfortably today. No noticeable air hunger or panic attacks.

Everything seems to be pretty stable. Although I just checked his O2 and it is at 85. The nurse hooked up the oxygen concentrator and tolf me to just turn it on if his O2 gets low. I forgot to ask what is considered too low.

He has only had 750 calories since Thursday at 3 pm. How long can this go on?

It seems like only his breathing is affected. The rest of his body doesn't seem ready at all?!

I hate ALS!!!

 

[affected]

Having a day that he was comfortable is a wonderful blessing for you both.

O2 is fine now as a palliative measure and to be honest if his sats go below about 92 OR if he shows any air hunger symptoms you can just give it to him. Once again it's comfort and comfort doesn't always match numbers so again go with your gut feeling.

As to how long this can go on, I'm afraid it's cruel indeed when it drags this way. It's hard to say how long, but I think you know that it can't be a very long time. It must be exhausting for you - the emotional and mental preparation you would be doing all the time.

So I'm sending more hugs and strength and love your way. Hating ALS along with you, but loving what an amazing job you are doing. Inside there Cliff knows this too.

 

[Narrowminded]

Sooner again praying and sending hugs. As Tillie mentioned below 92 for O2.

Hopefully it won’t be too long sweetie. I know your exhausted. You are doing an awesome job. Cliff knows it and we know it and I hope you believe it as well.

Hugs,

Sue