This Is Hospice, part 1

Part 1

I know everyone responds differently to hospice & morphine. But no one prepares the family for what could happen (how can they really)—phone calls all day asking for help. Groaning. Saying she can't breathe. Confusion. Anxiety. And while on the phone, repeatedly 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. Even an unusual attachment to one member of the family, regardless of who visits. And THIS is if your loved one is in a facility. A loved one at home is a whole other story. But, 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, even days that seem like they are getting better. You will not understand why, about anything, especially the hard days, or the moments you see your loved one in pain or zoned out.


It was so different with my dad. He had goofy moments, saying things like "bon journo essay" and talking about trips he never went on. He knew he wasn't coming home this time, even told Adam he would see him on the other side. His appetite was small (he didn't want to eat). There were times he would be agitated but hardly ever (usually because someone touched him, like the EMT's when they needed to take him to the hospital---he punched them, which was SO out of his character). And then he just slipped into a state where he barely recognized anyone. Then fell asleep, or coma, whatever you want to call it. And then he died. I know I have other details somewhere, but really he went in for therapy, and never regained enough strength to go home. We were told if we took him home they could call adult services because my mom could not take care of him (true). But his journey was quieter, he didn't call, but that could have been because he couldn't hear well. He did have really bad muscle cramps, got dehydrated really easily and had a uti. But like i said, everyone is different.


When i really think about it, for my mom, this started after my dad died. But it really took a turn when she had a bakers cyst. Everything fell apart after that. And what comes next is what I observed, felt, thought, saw and heard from November 16, 2021 til January 24, 2022. Know this, it's an emotional, physical, and spiritual exhaustion. —This is hospice—


Miralax started nov 16. 

Stool softener on nov 14, then 19 & 20

Metoprolol

spiriva

Flovent

Tramadol--back pain, compressed disc

Albuterol

Vitamin d

Emetrol--stomach upsets easily

 

Pretty sure no regular bowel movement since Nov 6. Some came out nov 19. Stomach swollen & hard, noticed nov 19, but probably longer. Drinking water, eating beans & lentil soup, crackers, but nothing regular. 

 

Nov 18–-miralax, stool softener, slice of pear. 

Complains of pain in bottom, maybe hemorrhoid. Weak legs. Afraid to even go pee because of being so constipated. Hasn't slept much in 3 days

 

Has COPD, oxygen at 3, 24 hour use

DNR on file

 

Went to ER nov 20 because her stomach was very distended. admitted to hospital. Enemas given. Kidneys were hurt because of not peeing. UTI. Given a cath and put on morphine. 

 

Nov 21, still in pain and another enema (4 now I think) and on meds. Liquid diet. 

 

Nov 24. Finally pooped and whatever the nose tube is moved some too. Meds are helping. Still miserable. Still can't eat. IV fluids, 1mm of morphine, still uncomfortable 

 

Nov 25. Enema given this morning, but no poop. On liquids, broth juice. Urine is still dark. Pt done but all she could do was sit up for a bit. In the morning she was more awake but at night now so much. 

 

Nov 26. Stomach was more swollen. Pooped early/middle of night, but again only after enema. Circulation is not good, feet turning purple even with compression. Pain, back sore, and then she was spitting up bile. One time was a lot. Stomach was hard. Pt came in, sat her up but lots of discomfort from stomach. Nurse turned nose thing on and out came about 850ml. Stomach softened, but harder again (7pm). She's on 2m morphine and toradol in between. Finally fell asleep. Talked with doc earlier, really not sure what else to try as they have treated aggressively and nothing gets even close to full relief. She allowed morphine dose to be increased and given more often (4hours vs 6). Even her doctor isn't sure what else to try. Papa, please give us wisdom...

Comments

Cooleyade said…
My heart hurts for you and your Mom. I went through so much of the same thing with my Mom. Life is definitely NOT EASY or for the faint of heart ❤️❤️❤️.-Janice
March 17, 2022 at 7:34 PM
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