My Dad

[LeslieR]

Dad continues to sleep more and more. Sometimes its hard to tell if he is asleep or just resting with his eyes closed. He Is no longer taking any breathing treatments, his urine was bloody last night (he has a catheter in) but no fever. He doesn't tolerate his feedings as much but he is still hanging on.

 

[wishmobbing]

That sounds pretty peaceful and I hope it is.
Is he hungry at all?
You hang in there, too. Good thoughts coming your way!

 

[Narrowminded]

Sending more hugs and thoughts for peace and strength

Hugs,

Sue

 

[LeslieR]

Thank you all very much for the cyber hugs and well wishes - and I send them to you all, as well!

Wishmobbing, he is thirsty and wants fluids (in his Gtube) he is get 3-4 cans of formula a day. He used to get 6 per day but he feels too full and bloated and doesn't tolerated that much volume anymore. I don't think he is actually hungry, though. I don't wake him up to feed him or feed him on a schedule anymore - we give it to him as he wants it. I think he is still conflicted regarding wanting to go and wanting to stay. He is so tired and feels ready but then his mouth and lips are so dry he asks for more fluids. then he sleeps for a long time in between... I know there will be a time soon where he either doesnt feel like he can tolerate the feedings or he will stay asleep.

He is still up and down in some ways .

 

[wishmobbing]

How's it going? How are you holding up?
Have you thought about giving him lots of water and only feeding him formula when he's hungry and asks for food? Could be it's only causing him "work" and keeping him. If he's not able to let go just now, he'll let you know. I'm sure you have the right instinct how to go about this!

I chatted with my PALS speech therapist, as he's having more trouble drinking. She said that enough fluids through the tube will basically quench thirst, but if the mouth feels dry and there's no ability left to swallow it could be nice to dip your finger wrapped in gauze in something tasty or refreshing and just touch it to the tongue and the inside of his mouth. Something he might miss drinking. like coffee or juice.
Excuse me if you're already all over this. Just throwing your thoughts around and wishing you lots of strength and calmness.

 

[KateEmerson]

I put a little coconut oil on my husband's lips, tongue, and inside of his mouth a few times a day which helped with the dryness. Wishing you and her Dad peace and strength. Kate

 

[Jlynn]

Hospice gave us little sponges with a stick like a lollipop to wet my brothers mouth especially towards the end when he didn't wake up often. Peace and strength to you.

 

[Narrowminded]

The swabs are called toothettes. If you don’t have hospice, they are available on Amazon, where I get mine for not much cost. I have to use them to “brush” his teeth since he can’t open his mouth but very little. They are easy to push in and gently moisten the mouth.

Hugs,

Sue

 

[LeslieR]

We got some toothettes! those have helped tremendously with the dry mouth. He had a horrible horrible day yesterday and I really thought it might be it. He couldnt really inhale and was struggling to breath even on the trilogy. We gave him ativan and morphine and called the Hospice nurse out to see what else we could do. We doubled his ativan and morphine and will be giving the Ativan around the clock on a schedule and the Morphine still as needed. We also added Levsin to help manage secretions. Today he is calm. I dont know how much weight he has lost but his face is looking very thin.

Yesterday he took in 2 cans of formula for the entire day. He is sleeping but arousable - still clear minded. He wanted soft music and the light off today. I have experienced the death of my brother from cancer and this progression seems very different.
It is an emotional roller coaster, for sure. I don't know if he has an hour, a day or 6 months.

 

[wishmobbing]

Thank you for the update. Like you said, a rollercoaster. Glad to hear that he and hopefully you too had a calm day for a change.

 

[Jlynn]

Thinking about you Leslie as you go through this difficult time. Thank you for taking the time to kept us updated. Hugs.