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Hi all-my 92 year old mom has progressing dementia, undiagnosed stomach pain (no more to investigate) and weighs about 90 lbs. Stroke in November which resulted in a steep decline physically and mentally. We care for her at home with round the clock aides and me.
We were treating her with CBD and Tylenol for pain and that stopped working. Seroquel for hallucinations was a nightmare. The pain and anxiety along with the dementia really put her in full on distress. We now have Tramadol and Xanax which seem to be helping but she is so blank. I also have a comfort pack from hospice that I haven’t used yet. I’m hesitant to start it. With my father once I started he passed in a week so I have issues.
I hate that she’s now semi out a lot of the time but the distress was beyond awful. Heartbreaking both ways.
Trying to keep her medicated enough to ease the distress and pain but not so much that she’s fully out of it. Tough road to walk.
Any advice helpful.

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Your only goal is to keep your mother comfortable & out of pain, distress & anxiety now; that is what hospice is for. Extending an elder's life at this stage of the game is cruel, imo. Which is NOT to say that hospice 'ends' a person's life sooner; they do not. They just keep the patient comfortable, which is the right thing to do. End of life care is never easy, but please make sure your mother is comfortable, even if it means she's not totally aware of everything that's happening around her. Sometimes it's better that way. My mother is 94.5, in chronic pain, and takes Tramadol 4x a day which helps her leg pain a bit. She's not 'ready' for hospice, which is ridiculous in my opinion, b/c she has advanced dementia & says she's ready to die continuously. Yet here we are, as a society, insisting on taking every measure possible to extend these poor souls' lives to 100 or more. Aggravates me no end b/c there is NO QUALITY of life left for them, let's face it.

Wishing you the best of luck keeping your mother's comfort in mind as you navigate her end of life care.
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tough road indeed. Your notes here contribute to my anger re hospice. It seems routine,much of how they operate, but imo YOU should have much more support for your very reasonable goal of easing distress a and pain but not making her "out of it" . If you're the one whose not seen my prior posts and all the feedback, my mom's behavior was labeled combative and/or agitated which resulted in hospice assigned MD (since dismissed) prescribing a low dose of seroquel 2x a day. ONLY to learn from trusted neurologists nurse that the drug is a BLACK BOX drug with specific warnings for the elder or those with dementia. So there was NO WAY I was giving that to her especially when she is and never has been psychotic. These prescribers prescribe way to casually imo and they will not be the ones with us if all hell breaks loose due to a reaction...I do hope it was just your dad's time and only coincidental in re to your using that "comfort kit" though I know I would wonder the same as you. Frankly, being a novice when we were delivered the "comfort" kit I wondered if it was for the patient or for us as the caregivers! We sure could use a little comfort ourselves! The burden on family caregivers was not well explained though I would not have done things differently, but the real shock is the lack of support and information. Just know regardless of the stops you make, on this walk, you are not walking it alone.
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Tramadol should not be used on the elderly. It causes hallucinations. We had to discontinue it on Mom.
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lealonnie1 Aug 2021
My mother is 94.5 and takes Tramadol 4x a day & has no hallucinations. Be careful about giving 'across the board' advice JoAnn. Everyone is different & there is no 'one size fits all' advice that applies
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I know this is a scary time--and you've had a 'bad' experience with EOL meds--but bottom line, you want to help mom and you have the tools at hand to do it.

I sure hope my kids see my pain and treat it when I'm 'there'.

Ask yourself "Why am I so opposed to using the comfort pack?" If it's personal, then you need to make it NOT be personal, but think of mom.

Morphine, for daddy, was the absolute godsend that kept him pain free for the first time in 15 years. We ALL breathed a sigh of relief when he began to slide into that sweet peace of pain free existence. He had suffered so much.
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Ask the Nurse from Hospice to explain the comfort pack and the possible effects. I used Morphine for my Husband and I have to tell you that the first dose I was able to move his arms that had been in a constricted position for a very long time. With the dose that I gave him he was not "out of it" but he was relaxed. But with or without the Morphine he slept a lot anyway so the sleeping was not unusual.
You can ask the nurse to administer the first dose and stay to see how she reacts.
The doses are small and not enough to kill someone.
The fact that your dad passed within a week of you starting morphine is/was coincidental. he probably would have passed in the same period of time.
It sounds like your mom is "out of it" currently so if using morphine allows other medications to be discontinued (if they can be) she may still remain in the state she is now.
All that said do what you feel is right for your mom. Set aside your discomfort with medications and keep her comfortable.
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