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Ok, mom has brain tumors, we know dementia is at play. She's had 18 (TIA's) and 1 massive stroke. In December 2022 we discovered she had brain tumors again after clearing metastatic lung cancer. It's back, hospice is in! Mom has arterial stasis wounds stage 2, but you'd think she was dying from the sores. She refuses to get up, demands to be waited on hand and foot. The new problem started a few weeks ago. Mom was taking Tylenol as needed for discomfort when the sores (ulcers) were at their worst, she had no pain whatsoever, only discomfort. After a pulled muscle in her back, a nurse quietly mentioned the cancer may have spread (it hasn't) she just pulled a muscle, but they started opioids. Back was better in like a week, but now she's on round the clock opioids and demanding stronger! We are all baffled as she will smile at you and when asked about paid "10! It's a 10! 10 pain, 10 pain!" She screams. Level 10 pain is (crushing a hand, having a baby, being burned alive) not 2 sores on a foot. What gives? Is she addicted to opioids in hospice? Yes, she is in hospice, but I feel like she doesn't know how to process the stimuli. I've explained this to the nurses, as her BP is perfect and her heart rate is excellent! That's not indicative of mind bending pain! Is this behavior? Is it addiction? I mean we went from Tylenol as needed to Vicodin to Morphine (which I put the brakes on) to Norco. She claims the only thing that helps is morphine and Ativan? So something is up. When I told her she would have no more morphine unless she was having air hunger at death (what it was actually prescribed for) she pouted. Then started telling anyone that would listen about how she's being deprived and left to suffer in her lowly state. She has sores, two level 2 arterial sores. Yes they are uncomfortable, not to the bone, nerve tissue, etc. They are sores which are being treated very well. What on earth is going on with her? I'm not depriving her, she has Norco but I'm not drugging her because it's there! Then when she truly needs it, it will not work! She's urinating on herself because she doesn't want to get up and go to the bathroom (5 steps from her) she will not leave this bedroom, bathe or allow bathing, etc. She will be laughing on the phone with my aunt in one breath and dying of this miserable pain the next. I feel like I'm the one losing my mind!

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This is how I look at pain with a person who suffers from Dementia. They become like small children. When a sm child scrapes their knee, you may think they were dying. I think this is how a person with Dementia feels, IMO. It may be mothing but to them its a lot more. And I do think there is info that opioids can actually cause more pain, one reason people take more and more. If Moms B/P is not going sky high then I would not think she was in physical pain, may be a mental thing.

But I agree, she is dying so give her what she thinks she needs.
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Brain tumors hurt - I had One and yes I was falling down and given 6 months to Live . Ativan is for anxiety - if you Know you're going to die you would want Ativan and Morphine . I was in a Burn Unit for a Month and given Morphine - Thank God - But I Lived and they stopped the Morphine . The Hospice Nurses know what they are doing . I would respect your Mothers wishes and pain because Knowing you are going to die is a tough Pill to swallow .
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The Maid, I'm so sorry to hear she had another stroke, and sorrier still to hear about her addictions that robbed you of your mom.

((((Hugs)))
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Read the first few paragraphs of your post again. Then try to gauge what constitutes "real pain" for your mom who's already at the end of her life but "should" have her pain meds strictly regulated bc you don't feel they're warranted? She's "faking pain" in other words? Really, who cares? It's insulting to suggest such a thing so I'd stop doing that and give her the benefit of the doubt in this situation.

I am going to make sure my loved ones KNOW for sure that once I'm in hospice care, I'm to get whatever comfort meds I request. Period.
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Themaid Jun 2023
I grew up with her addicted to any mood altering substance she could get her hands on. So forgive me for giving her a bit of the side eye. Ooh btw. I'm the ONLY caregiver - I have a sibling but she doesn't help because we both left home at age 14 due to abuse of any kind you can think of!
And I'm asking if this is normal with dementia to scream in pain when they can't process the stimuli. I don't want her drugging for the hell of it. I'm not enabling the behavior that I had to live with my entire life because she's dying. I still have to live with myself
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At this stage of the game, there should be no stigma about the use of opioids. My pain is mine, your pain is yours. We all have differing levels of tolerance to the pain.

Just give her what she wants/needs. Don't try to 'figure her out' esp with dementia. It's impossible and you'll go bonkers trying to decide if she's really hurting or if she's faking.

If the drugs are a part of her Hospice Cocktail, then use them.
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Like already said, who cares if she becomes addicted to morphine or any other pain medications hospice may give her as she is dying. So let her die in peace and pain free.
My late husband who was under hospice care in our home for the last 22 months of his life, and had had a massive stroke many years earlier, suffered great pain the whole time. Hospice tried morphine, then fentanyl patches and eventually he had a fentanyl pain pump. And he still suffered in pain.
His hospice nurse came to the conclusion that because of the damage done to his brain from the massive stroke and the many seizures he had over the years that his brain was no longer able to process pain medication like a normal brain would. To me that made great sense.
Perhaps that is your moms issue as well as you say she's had several strokes too.
But the bottom line is, please don't let your mom suffer in pain. It doesn't matter what you think at this point really, as long as your mom is comfortable and can die in peace, and hopefully pain free.
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Themaid Jun 2023
Thank you, this is what I sort of wondered. If there was an issue processing the stimuli. I still have caution signs because she spent her life as an alcoholic and addict so I just get worried.
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Hospice is end of life care. You have described a dire set of conditions, any one of which would be bound to cause severe pain. Pain is "subjective", not "objective". That means that a patient is asked about his or her own pain levels. The answer to how much pain your mom has should come from her, not from you in my own humble opinion as a retired RN.

Hospice is about quality of life, about being as comfortable and HAPPY as one can be at the end of life.

I am very curious about why you would fear addiction in someone so near death?

I don't understand your wanting to deny your Mom medications at this time, no matter when or why she wants them?
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Themaid Jun 2023
She was an addict my whole life and it took lung cancer for her to stop abusing alcohol and drugs. So yes, I guess it's a childhood holdover of what if's. My mom would drug herself to oblivion. My thing is, even the doc was like this is not what the morphine was prescribed for. She was given 10mg Norco for this. Who introduced the morphine? (A hospice nurse) I had it put aside in an emergency kit. And the *pain* keeps moving- fromfoot to back to foot to stomach it's all generalized so they want to see if there is something less sedative she can take. In order to have quality time and not just be drugged up.
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When my mom was told she had cancer that was going to kill her, in short order, she opted for hospice and she never woke up again once she started. She knew they would keep her drugged and it wouldn't matter what her pain was. I agreed with her, if that's your wish mom, I honor that. She died in 5 days and she never suffered after they started the morphine.

Life gets to a point that being drugged out of your head is actually the best choice, especially with a painful cancer.

If she wants to use hospice to keep her unaware, let her. If it can't happen in your home, place her in a facility that accepts hospice and let them deal with keeping her clean and drugged on her final journey.

I know this isn't easy but, it is her end of life and she should not have to be in pain.

Oh, dementia makes pain receptors wonky, my dad had 14 teeth that had broken off leaving exposed root and never had a moments pain. So you can't judge if the pain is real or imagined, they can't either, let her be comfortable.

I am sorry you are facing losing your mom, it is hard. Hugs, you will do the best thing for her.
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Themaid Jun 2023
Im actually begging them to admit her to the hospice facility. They won't take her yet because she is only a PPS score of 40
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Hospice is providing comfort medication. I don't think you want her suffering.
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If I am ever in hospice , I hope they give me whatever I need for comfort and anxiety , don’t worry about addiction and without judging my perception of pain. Maybe her anxiety level is higher . Maybe that needs to be reassessed ….the Ativan .
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I’m sure you have the
option for hospice to be provided in an institution if that’s what she needs. Look into that so that you can keep your sanity, if she’s living at your home or hers.

She has little time left, so stop being the opiod cop and let her have whatever she wants for her pain. From what you describe, she isn’t going to be all perky and happy. If she wants to be drugged out of her mind, who are you to refuse for her? Based on some idea of how she should be? With all that’s going on in her body, there’s no going back to normal.

Very sorry you’re having a hard time with this, but it’s time for you to stop analyzing everything and let go.
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Themaid Jun 2023
Im trying really hard not to analyze, but again, I never had a mother. I had an addict I had to babysit. Really the behavior hasn't changed only now there's an actual reason for it. Of course there's always my sister who will be more than happy to pop into my home for an hour or two to tell me all the things I'm not doing. I'm tired, I've cared for this woman for 41 years of my life. And you know what, not a soul has asked me how I am or if I need a break.
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Please take a step back, at least emotionally, and stop trying to reason and explain to a person with known dementia at play. The less you say to her the better. Hospice nurses were excellent with us knowing when and which meds were appropriate and I relied heavily on their advice. Ask for an honest assessment of the pain your mother may be experiencing given the dementia and medical circumstances both. Don’t spend a minute being concerned about any addiction issue, it just doesn’t matter either way. Ignore the wailing about being a 10, hard as that may be. Have her in Depends and forget going to the bathroom if she’s refusing. Our hospice company gave me a list of workers to hire for additional in home help, they weren’t employees of theirs, but people who they had worked with and knew to be good. They all negotiated their own hours and pay with me and were excellent and proved invaluable. Please consider something like this if you’re on your own. I’m sorry you’re both going through this time, I know it’s so very hard.
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One of the problems with dementia is the inability to accurately process pain. At least this was the case with my mom, and I've heard it from a lot of posters here.

Your mother has brain tumors--seems like there's a good chance that her thinking/reasoning/processing abilities would be WAY compromised.

What does the hospice nurse say?

How is addiction an issue here?

Won't she simply be give MORE morphine if there is air hunger and her body has acclimated to it?
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Themaid Jun 2023
Well the nurse was concerned that her taking 2 opioids within 45 mins she thought it was dangerous and unreasonable since. He BP is good he is excellent. She actually had another stroke yesterday and fell in the floor. Interesting enough your post is right on point! She hasn't asked for a pain pill sincw the last stroke and only wants to sleep. So I do suspect it was the stimuli processing. Thank you for not judging and just helping me💙
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