My 88 year old mother is in Hospice care. She has been prescribed a pain medication. One side effect (said the Hospice Nurse) had caused my mother to feel that she is in more pain than she actually is (hallucination). She had gotten too much of the said pain medication built up into her system (not an actual overdose) and since then she has been in worst pain than before. The Hospice nurse since then prescribed a stronger long-lasting pain medication, a sedative, and another medication to perk her up during the day and continues using the same pain medication that caused her hallucination. I'm left with the impression that she may not be in as much pain as she thinks she is and the medications are causing her to be in a worse state than she actually is. Is it possible that they are mistaken and making her condition worse via the medications? Because a week and a half ago she was able to use her commode with assistance. Now she cannot bare being turned in bed. Before she could have a coherent conversation. Now she is in a dream-like state and muttering. I can only imagine that the only way to find out what her real status is is to find another medical program that would reevaluate her condition. This would be difficult to do wouldn't it? Or are they doing the right thing? Or perhaps I am not willing to admit to myself that my mother is dying and there is nothing that can be done about it? Also, it is hard for me to believe/understand that her condition is deteriorating this rapidly. ***I did not know if it was necessary/appropriate to include specific details of mother's illness and medications being administered.
Your description of your mother's symptoms do suggest that she is approaching the end of her life.
At this time i would her to eat or drink very little and sleep most of the time.
Bone cancer is very very painful and any movement is very uncomfortable. If you can give a dose of medication half an hour before moving her.
Methadone dosage is very difficult to get right which is why liquid morphine is usually used in combination with a long acting narcotic.
Dilaudid is a good pain reliever but not often used these days. My personal choice and I emphases personal would be a fentynal Patch and Roxanne (liquid morphine) for breakthrough pain. It itially fentynal patches take about 24 hours to start working and they are changed every72 hours so there is no break in pain relief. There are chart for calculating doses based on previous use of similar meds.
Would you rather that mom was sleepy and pain free most of the time rather than being kept awake with an amphetamine?
You have every right to refuse any drugs or treatment you feel is not helping Mom.
I would address these concerns with the Hospice staff first thing tomorrow morning when all the proper people are available.
You have two of you providing care so you should be able to manage this care Many people do it alone which is too much. Hospice should be sending someone in 2-3 times a week or more often to assist with things like bathing. make sure you both have somewhere quite to sleep during your down time.
If all else fails change Hospice providers if there is a choice in your area.
My mom was on hospice at her NH. Hospice coming in 3 days a week type of situation & augmenting the care already provided by the NH. Very different Hospice than the in unit experience with MIL. Mom on Hospice 18 long, long months; MIL 3 weeks. Very different paths to death. Hospice is an amazing resource for the patient and thier family. If this is Medicare benefit Hospice, bereavement counseling is available for you later on should you want it.
If you and your brother don't have confidence in yours, speak to hospice and ask for someone to visit or at least call you to go through any questions you have. Make a list of questions, if you like. Don't hesitate - you're not complaining or arguing, you're just asking perfectly reasonable questions and you have every right to considered answers.
" do you think that there might be a combination of pain meds that would allow mom to be comfortable AND coherent, or is her disease so advanced that we can no longer hope for an alert state? ".
" Is this the right combination of meds? If Dilaudid is causing hallucinations of worse pain, should we consider weaning her off that and using something different?"
I understand the sort of incoherence that comes with watching a loved one die. I was mostly mute with dread, watching my mom in hospice, except for wanting to strangle my SIL, who is sweet and wonderful, when she'd ask what I thought of as bizarre questions of the nurses. It's not easy, and I had complete confidence in what the nurses were doing. Please try asking your questions. You have a right to be without doubts.
I have been told that when cancer matastesjzes to the bones, the pain is awful but I have no direct experience. I'll let others weigh in.
I'm so sorry that your family is going through this.
From what you describe, she knew she was in pain and was slipping away. I'd do what Barb & Veronica suggests above and make her as comfortable as possible on her journey. Hugs.
You shouldn't post any information that would *identify* your mother, but it's fine to be specific (as specific as you're comfortable with, anyway) about her illness and treatment.
Thank you everyone!
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