This Is Hospice, part 2

Part 2

Nov 28. Nose tube, catheter removed. Food changed to soft foods. On one hand she is better, on the other hand this afternoon she seems worse--but not pain. It's different--emotions, physical, mental. She's tired. She does not want to go to rehab. Yesterday and earlier today her veins were no longer holding the iv. They are getting ready to try again. Nothing helps her discomfort. She is sleeping a lot. Nurse thought maybe some of the pain is because her bowels are starting to move again. Putting an iv in will allow for morphine to be administered easier. Routines tomorrow go back to "normal" which means I won't be able to be here all day. She is not happy about that...

 

And of course her veins still aren't holding the iv. Ok, they got one to stay. Gave her 3mg of morphine. 

**a side note. Through this, at one point mom actually felt better and was excited to eat real food. her doc had mentioned this could happen again. Mom said if it does, she did NOT want to go through the treatment again and to just let her go.

 

December 4. She's at bruceville terrace, came November 29. Was for rehab because her body is so weak. Stomach is still swollen but not hard. Not doing well with any PT which we expected. She is being moved to hospice care. Often when she wakes up she is saying "momma" which is what she called her mom. Her body has a weird twitch that wakes her up. Very small appetite. The body is so crazy, her mind is ready but her body keeps going. Side note--she has found an odd sense of security in holding the bed remote, the call button, tv remote and her phone.

 

Hospice nurse will visit 2-3 times per week. They will not take her to methodist for any emergencies. Bruceville nurse will call hospice nurse with updates and any changes. Comfort related meds. All other meds go through regular insurance. If for whatever reason we change our minds and want to call 911, we need to contact hospice to advise that we did. Went over meds. Last bowel movement was 12/4. (Side note, her body tremors are becoming more often and her stomach is firmer--not as bad as before, yet. Breathing seems more labored.) decisions go through bruceville doctor. If they cannot get ahold of the doctor they can go through theirs. She can take 10mg of morphine every two hours, and if needed up to 20.  She will stay on liquid morphine for now.

 

December 6. She just zoned, sleeps with her eyes open. Calls for momma. Then didn't want me to leave, got upset. This sucks. It shouldn't be this way. So many people in this place too. 

 

December 7. It's 6:38am, I've been on the phone with my mom since 6:08. Rough morning. Said she couldn't breath, but she was getting a breathing treatment. Lots of pain, but they said it was too soon to give more meds. 7:30, morphine given. Another breathing treatment too and finally calmed down, hung up at 8ish. Rest of the day she was quiet, but at 10:30pm she called saying she was having a hard time breathing. Nurse came and gave her morphine and for some reason that helped--maybe some anxiety. She said she thinks it's because she gets nervous. Stayed on the line with her for a bit. She was calmer. 

 

December 8. Her twitching is now in her legs too. Still no reason why. She was asleep when I got to her room. Not much conversation, ate a little bit. Stomach is not as soft. Hospice nurse came in, said twitching is part of the body process of shutting down, no time frame with it, just they body not being able to control things. Last bowel Dec 6. She called at 11pm, saying she can't breath again, and that the nurse was leaving. Kept saying she needed me to come down. A gal came in to give her a breathing treatment and some pain meds. She continued to seem upset/uncomfortable? Not sure how you explain it, groaning, miserable. Hung up accidentally. She called back at 12:20am, same thing--can't breath need help. I talked to the nurse. She gave her the morphine at 11:20. Next dose is at 1:20. She called hospice about her anxiety at night, I will too. Finally calmed down at 12:45

 

December 10. (I know this next paragraph is what i shared in part one, but this is when i wrote it) I imagine everyone responds differently to hospice & morphine. But no one prepares the family for what could happen--phone calls all day asking for help. Groaning. Saying she can't breath. Confusion. Anxiety. Even an unusual attachment to one member of the family, regardless of who visit. And while on the phone, repeated asking "are you there?" And if you aren't by their side, constant phone calls. And for the family-- Waiting. Guilt. Anger. Tears. Unknown. Exhaustion. Questions without answers. Sleepless nights. I would tell people to be ready for anything--childlike behavior, confusion, calling out for one person, repeated phone calls, not recognizing you when you walk into their room, good days & bad days, wondering if you’ve done the right thing, wondering and even trying to figure out how to bring your loved one home. You will not understand why, about anything, especially the hard days, or the moments you see your loved one pain or zoned out.

 

Not a good day at all for mom. I spent most of the day on the phone with her (off and on but mostly on). Kept complaining, saying she couldn't breath, needed help. Spilled her juice. Bloody nose. When I got to her she was licking her fingers to get the juice off (I guess, not really sure). Still holding her phone, and a grip on the call button. Confused more today. Hot. Kept saying she can't breath but that's just the anxiety. I don't think she has slept much today. Asks for pain meds way too soon, but it's just that she can't remember when she got meds. Twitching appears constant now, including a tremor in her hand. Forgot to mention yesterday and still today, urine is cloudy, actually seems built up in the tube, and not as clear. When I finally got to see her(6:30), she fell asleep which I believe was the first time today. Was still asleep when I left (9:15)