betsy1
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To all of you….thank you for your compassion and tender words.
Even though I found you so late (I wonder why Paula did not tell me about you, nor continue her conversations with you) I feel more connection here than within our own circle of family and friends. I believe it is because of the understanding that is only possible with shared experience.On Monday, October 14, at 6:25, Paula breathed her last breath. She had spent a very rough weekend, with pain and agitation. She had a blockage high in her digestive tract. Whether stool or cancer, I don’t know. On Sunday for the first time in a while she vomited. Meds for nausea, pain, and anxiety were administered with apparent minimal relief. Night on-call hospice came two or three times. On very early Monday she began vomiting copious amounts of brown fluid. I believe it was liquid feces that could not exit her body in the normal way. Her meds were adjusted. She stopped talking. She was too weak to hold the sippy cup that we used for her water. Her mouth dropped open, her eyes were half closed and a bit rolled up. She did not respond to anything. I constantly had my hands on her, telling her she was beautiful, perfect in every way and that she was safe and would be fine. I thanked her for all the years of caring she gave other people and for teaching us to take care of one another and ourselves and assured her we would be fine. She moaned constantly, sometimes saying ‘mom’. The only time we heard other than moans was when she made a quip in response to something someone said. She experienced severe abdominal cramps and appeared to be comforted and worked with me when we did deep breathing together. The nurse suggested I call the family. When her daughters got there, the moaning stopped, but not her disappearance. This continued for several hours and I feared she would breathe raggedly and be in pain for days. I was out of the room for a few minutes and felt the need to go back. When I walked in the nurses had raised her bed and were telling her I was not gone I was right there. I ran to her side, followed closely by her brother. I took her face in my hands and told her I was there and would not leave her. I asked her if she could look at me. To my amazement, her whole face made a movement that was reminiscent of a camera adjusting itself. She looked straight into my eyes with clarity and intelligence and held my gaze for 5 to 10 seconds and left without a sound.
Thank you all for your kind concern. Paula was diagnosed, had surgery, chemo and radiation at OHSU. Her hospice was Odyssey until they were bought out by Gentiva out of Texas. I think Paula went on board with them while they were making the transition. The hospice people who work with Paula hands-on, are good people. The gentiva administration…not so much.
Once she went on hospice, all treatments stopped. It has all been symptom -driven pain and anxiety relief. Her only doctor is the hospice doctor. She had never met him until August of this year when her left femur broke. He came to visit her at St Vincent Providence the morning she was released to go back home and back on Gentiva home hospice.
Until the fracture, hospice had her on fentynal patches, dilaudid and lorazepam.
While in the hospital for the bone repair, she was changed to OxyContin 120 mg am and OxyContin 120 mg pm. She has as prn sublingual oxycodone, oxycodone 5 mg tablets and sublingual lorazepam. She was recently put on lactulose for constipation and to help clear her confusion in case she had a buildup of ammonia. Her confusion is worse and nausea and vomiting have started about the same time she started lactulose. She is allergic to morphine. Fairly early in hospice they tried methadone for pain relief but she had a severe reaction to it.
She is also on a creme delivered topically for nausea. They have mentioned haldol, but she is not on it.
I was surprised that her OxyContin dose remained so high after her surgical pain eased somewhat.I never argue with her nor correct her behavior when she lashes out. I understand it could be caused by many things and I never would want our last words to each other to be harsh.
She is married, but her husband is paraplegic and he is physically limited in his ability to care for her.
Susie, I see we live in the same town. What doctors do you see? Are you currently in a treatment program? Is your cc intra or extra hepatic?
My daughter has declined dramatically since the fracture. She is very thin and very weak. I don’t see how she can live much longer in such misery…and I am brimful of anger and despair that this is so hard and nothing seems to help.
I just spent an hour on a long hunt and peck answer, but it seems to have disappeared before I completed it…so I will just say she was diagnosed with stage 4 intrahepatic cc. Probably 4 yrs ago
About 3 years ago she went home from the hospital to home care hospice with the professional guess of a life expectancy of 6 to 9 months. No treatments. Just palliative care. Until her femurs spontaneously broke at the site of bone lesions we didn’t know she had. Hospice noted the leg pain and treated it for pain but not for finding reasons for this new pain. This was about a month ago, and she had titanium rods put in both femurs and radiation at the break sites. She is back home, catheterized, bedridden and miserable. Her belly is quite swollen, and she is being treated primarily with pain killers and Ativan.There are pages and pages of pain and difficulties I have not addressed here.
Like you, Lainey, this daughter and I have been very close..and of course we have weathered anger, upsets, etc. But this behavior is different. It appears to be purposely painful, and has been aimed primarily at me and her husband. And now her own daughter.
