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I could give him Lisinopril daily but sometimes his bp gets really low?!

He can't be without his mask now... He starts panicking when I swab and try to clean his mask before I put it back on.

Laid awake early this morning wondering about showering and toileting with the Trilogy since he can't be without it now.
 
If you have a long hose you can shower with the trilogy :)
 
Yes, and for toileting, it can be on a chair, shelf, table, rolling cart. Hoses are supplied up to 10' long.

Some of our members have used a mouthpiece instead of mask in the shower. Also, a nasal mask is obviously easier for cleaning the mouth.
 
Sooner - I am so sorry for what you are experiencing right now. I'm sending HUGE hugs your way. Please know I'm sending good thoughts your way.

The trilogy has 6 hours of battery, 3 internally and 3 in the external battery. Don't be afraid to unplug it to take it for toileting or showering. You should be fine for both, just learning to juggle it with Cliff etc can have a little learning curve. I'm confident you will be fine figuring that all out.

Hugs,

Sue
 
So yesterday he couldn't go without his Trilogy. This morning I managed to get him over the commode, showered and into his recliner without taking off his Trilogy.

He went to bed at 3:15 and a couple of hours later had air hunger even with the Trilogy. He was panicking and telling me he need to pour it out. I finally figured out that he thought the humidifier water was making it where he couldn't breathe. I had to give him Morphine and Lorazepam to calm him down.

Two hours later, he is struggling again, more Morphine and Lorazepam.

I wasn't expecting this much progression within 24 hrs. I guess his plateau is over.

I am sitting here wondering how long this can last?
 
Cliff hasn't had a bm in 5 days. I have been giving him full doses of Miralax for the last 3 nights. The nurse gave him an enema this morning and nothing happened... She said he has great bowel sounds but nothing is moving. UGH!
 
Sooner, hang in there! Plateau being over sounds very scary. I'm sending you strength and gingerbread.
 
Many hugs to you sooner.

Everything can change so very suddenly. I hope you both have an end of life plan that you can slot into, regardless of whether he comes a bit better or not.

I hope you can get those bowels moving, it could be causing some of the extra anxiety for him. Just give him the meds regularly - don't wait for air hunger or anxiety to build. It's harder to control if it builds up, easier to control if you keep giving regular doses as soon as you see him starting to need a little something.
 
I completely agree. My plan was both Morphine and Lorazepam every 4 hrs but the nurse wants me see if the Lorazepam will keep it under control until he has a bm. I told her, I DO NOT want him uncomfortable or having air hunger so I will try it but if he seems agitated at all, I am giving the morphine.
 
We had a number of these episodes( no morphine as a factor) A dose or two of Milk of Magnesia seemed to get things moving. We also found when we put him in the sling with his knees up (suspended over the commode) the position helped him move his bowels.
 
We put him in the sling today when we did the enema. Didn't seem to help. Tomorrow the nurse will be back and will give him a suppository.

He hasn't had any feedings today. Only meds and water. The hospice nurse told me to start thinking about when I wanted to discontinue maintenance meds and just do morphine and lorazepam. I offered him feedings a couple of times today and he didn't want them.

I don't know what the right thing to do is?! I am worried that if I give him the feedings and he isn't digesting them, then I will be making him more uncomfortable?! But I don't want to withhold feedings if he is still digesting?!
 
sooner wrapping you in a hug

On the easter Friday I knew for sure Chris was actively dying. I gave him half his peg feeds that day which was not very much. On the Saturday I really knew and he was not hungry even though he was lucid, despite the clonazepam and morphine. I stopped giving him any feeds and limited liquid to just a tiny bit to flush the morphine into his peg.

I worked closely with palliative care, speaking to them on the phone twice a day.

He was never hungry at this point, and toileting him was not easy. He passed very peacefully early hours of the Tuesday morning after easter. I am certain that stopping peg feeds on the Saturday simply made things easier. His body did not have to try and deal with his digestive system, and he did not linger on for 1 -2 weeks like I have seen many PALS do when giving food and fluids at this point.

I put my energy into creating a beautiful ambiance, doing a lot of body contact by gentle face washing, hand and feet washing/massaging. I had large swabs sticks and would moisten inside his mouth. Talking quietly of how much I loved him and just being there.

He may still be digesting to some degree, but is it helping him or just holding him in this final decline longer and is that good for him?

Palliative care will really help you with comfort measures.

still hugging you
 
Thanks Tillie! I honestly feel like it will just prolong the inevitable. He is going to have to continue on the drugs because of the air hunger. I just don't like to have to make these decisions. I hate ALS!
 
Hating it right there with ya. Giving fluids and nutrition will prolong the inevitable, by hours or days, but also emotionally. I have to say I found a real place of peace in myself by knowing I could keep him comfortable at the end. Don't worry about the meds, they won't really prolong things. Follow your heart now.
 
Sooner hugging you tight from here. I’m so sorry I wasn’t on here earlier today.

You may have to go fishing to get a bowel movement. I have to do that with Brian as he gets what I call rocks in the box and they seem to create a dam if you will. An enema won’t help, them pass, but will make it easier.

In Brian’s case last Spring, no food for several days and just water for meds, if it’s not their time it won’t make it so.

Also, sometimes they can get fluid in the tubing from condensation of the tubing air is warmer than the room air, so see if the tube does need dumped out.

Not saying you are not nearing the end, just some things we have found over the years.

Hugs,

Sue
 
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