What can we expect?
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Hello Glenda,
Our experience was very similar to Rae’s experience with her Dad. When my Mother took sick, she lived with my family for 17 months. I found hospice to be somewhat helpful, but they could not explain to me why some of the side effects happen. It was helpful to hear about the confusion being because of elevated ammonia levels in the blood. My Mom got confused also, but pretty much stayed in a hospital bed the last three days because she just could not move anymore. She stopped eating the last 7 days, and drinking the last 5 days. I still tried to keep her mouth moist with these great little oral sponges that have a minty taste that hospice provided. I probably could have taken care of my Mom, but it was really nice to have the aide come in every day just to freshen her up. They know better how to move the patient with the least amount of discomfort. I was always afraid to hurt my Mom.
Carol
Hi Glenda,
I’m so sorry about your mom. My dad was taken by this disease at 70, and he also passed away at home. My mom and I took care of him.
Regarding what to expect, I know from reading the posts on this site that people have very different experiences. Our own experiences were similar to some here, very different from others.
We had overall, a very good experience with hospice, and I don’t know how we would have made it through without them. When my dad was no longer able to get out of bed, they arranged an aide to to bathe him and wash his hair, which we never could have done, at least not that well. They made sure we had medicines on hand before we needed them. We could call them 24-7, describe what was happening with my dad, and they would know what it meant, if anything could be done to help, etc.
In the last 5 days of his life, my dad became very confused, and did not always know who we were. This was because of the ammonia building up in his blood due to liver failure. He stopped wanting to eat, and rarely wanted to drink. As the fluid built up in his abdomen, it pressed on his lungs, which made him a bit short of breath. He refused the oxygen that hospice had brough earlier to have on hand. In the last 72 hours, he became very agitated and constantly tried to get out of bed. He couldn’t stand or walk, so we were forced to sedate him so he wouldn’t hurt himself. We felt it was either that or a nursing home, which we knew he didn’t want.
I can provide more details, but I hesitate to write them here. I don’t want to upset anyone. Please e-mail me if you need more specifics at rwojdylo@semo.edu.
My prayers are with you and your family as you go through this difficult time,
Rae
Our 93 year old mother was dx with chlangiocarcinoma in Nov 2007. Bilirubin was 12 and they couldn’t pass tube to open bile duct. Had to put a tube through the side. Has had tube exchanges every 8 weeks since then. No chemo or radiation because bile duct brushing was not successful. She probably would not have chosen this route anyway because doctors said maybe would only give her a week or so extra life. Had another MRI last week and cancer has now spread to the omentem and more involoment in the liver. She is now taking pain pills where before she only wanted tylenol and it was controlling the pain. Her abdomen is becoming distended. She is not losing weight but is very unsteady on her feet and my sisters and I take turns staying 24/7. She has a bedside commode but needs help to get to it. What are the changes that we can expect and what signs do we need to look for and be aware of? Mom doesn’t really want hospise, just wants her girls there. She was in perfect health and was raking her yard and living byself until the jaundice and itching started in Nov.
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