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You say that you do not want your Mom to die of "bleeding out". Have you examined why you feel this way? Because we all die of SOMETHING, tho most things cannot be "seen" in the way that bleeding can. Dying from loss of blood is easy compared to most deaths from heart, kidneys and lungs shutting down. I had a friend with leukemia who, after a long battle and the certainty that she could not be cured, DID go to ER, but refused blood, and was quickly and gently gone.You Mom has refused treatment interventions. And the fact is that treatment may come to little relief in the long run.
I would not move her and that would be my own personal decision (you will be having to make your own and apparently even Hospice is leaving this decision to you. I don't, as an RN, see the sense of filling Mom up with blood, just to have this happen again. I WOULD be certain that there are not now any blood thinners, or ASA on board at all.
I am so sorry.
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AlvaDeer Jul 2022
I know Hospice would have told you this, but it is unlikely also that your Mother can remain on Hospice which is end of life care, and still go to the hospital for treatment.
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My mom was in memory care and was placed on hospice due to GI bleed. My mom refused colonoscopy. My mom’s living will stated she wanted no interventions.

if you send her to the hospital, I would think she would have to come off of hospice. Personally, I would not do that…but I’m one who believes at this stage , man’s medicine can get in the way… Hospice will keep your mom comfortable. Sounds like this may be what takes your mom. Hard to say, I would embrace the process ……My mom passed in her room. Hospice kept her comfortable, the chaplain who called on her came, read to her , prayed over her, sang for her… hospice came out when she passed, arranged for the funeral home etc…

hugs to you
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tinabyrum Jul 2022
She is on hospice pallative care not end of life. She has the start of congestive heart failure but no heart meds, she has had stage 3B Kidney disease for years, and has late onset alzheimers. She can still walk with her rollator, takes herself to bathroom, gets up outta bed, and eats well. Is not suffering. Does fall occasionally.
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Tina, welcome and (((hugs))).

What does mom's advance directive say?

Have you spoken to the hospice nurse about whether they recommend stopping hospice to get some intervention? She can be treated and go back on hospice.

What sort of intervention for the GI bleed is contemplated? In your shoes, I would opt for comfort above all. Hospitalization is rarely comfortable for folks with dementia.
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tinabyrum Jul 2022
Mom has a DNR. She had a GI bleed last May and admitted to hospital for a 4 day stay where they just monitored her hemoglobin levels. The bleed stopped. It was a lower gi bleed most likely from diverticulitis. GI doctor’s plan was to treat mom with noninvasive treatments. Put her on protonix.
Hospice nurse will do whatever I decide. I obviously do not want her to die from bleeding out. And yes, the hospital is her worse enemy. That is why I am hesitant about sending her there. At present I am trying to wait it out til Monday so I can call her GI doc. Doc said to call him if she had another bleed. The Memory Care med tech was freaking out and calling on Hospice to do something.
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I would keep her in hospice and hope her days of suffering are not too long. Why do you want to consider prolonging a life of suffering unless you feel she should be kept alive at all costs? Is that what she would prefer?
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tinabyrum Jul 2022
I feel like I would feel guilty if I dont at least have her checked out but do not want her traumatized in the hospital setting again.
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When my LO was diagnosed with COVID I requested that she remain in her MC unless she was in evident and imminent distress.

My request was based on both her condition at diagnosis and her original intentions from the paperwork when giving me POA.

At the time she was 90 and already failing rapidly.

She lived without hospital intervention and had a second much milder case of COVID, but also had a fairly good quality of life following her second recovery.

If you are basing your decision on the amount of discomfort from her current health emergency vs. her observed discomfort during hospitalization, it may help you make the difficult choice between two alternatives that are not necessarily
“happy endings”.

I had no “good” choices when my LO got so terribly ill, but did have consolation in knowing that my thoughts and decisions were in line with what hers had been when she’d signed her papers.

Hugs and hopes that you’ll find a measure of peace as you decide.
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Asking for a clarification here..."hospice palliative care, not end of life". Hospice is for anticipated end of life. Palliative is somewhat different. How is she she on hospice palliative care?
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What is 'hospice palliative care not end of life' mean?? If that means she can go to the hospital w/o being taken off of the hospice program, then you have to weigh the pros and cons of taking that measure.

This isn't about you feeling guilty and taking her to the hospital as a result. You said the hospital is your mom's worst enemy; if so, why would there be any question about taking her there again? She's been thru a GI bleed in the past, according to what you said below, and nothing was done about it in the hospital; it cleared up with Protonix, if I'm reading your words correctly. If that's the case, why not have her take Protonix or Prilosec or one of those meds, which should be okay with hospice.

Once my mother with advanced dementia, living in Memory Care, was on hospice care with a DNR in place, I did nothing to extend her life. She was taken off medications/supplements and only left on pain meds and Prilosec needed to keep her comfortable, and hospice added Ativan and morphine as needed. Without Prilosec, she would vomit ALL the time b/c she had a bad stomach.

Your goal should be to keep mom comfortable and not agitated or upset. If taking her to the hospital would be upsetting to her, don't do it. That would be my criteria if I were in your shoes.

You may also want to check with your hospice group about what their function is EXACTLY so there's no misunderstandings in the future. Know 100% what you signed your mother up for, and what your options are and aren't. Hospice doesn't allow hospital visits (except for certain extenuating circumstances like a broken bone), but again, you're using terminology that makes no sense to me, so IDK what the deal is with your hospice group. Do you?

Good luck.
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Personally, I would ask GI doctor as well as hospice if there is anything that could be done IN hospice (I suspect minimal... maybe Protonix, etc but I don't have any idea). I swear we are programmed to "freak out" at the sight of blood. There is no "correct" decision, but for me and my LO, I would avoid the hospital at all costs. My LO has severe dementia and is in MC. His hemoglobin is slowly dropping without an obvious cause. I may soon be crossing the same bridge you are. We all know hospitals aren't pleasant environments, and I would not want my LO to undergo repeated blood draws or vitals checks, infusions, or be in a noisy disruptive environment. I would also hope that whatever problem was going on that people would be calm and reassuring to my loved one that he will not be alone or in pain. My understanding is that hospice is that calm, reassuring place... I would find it valuable to know how things turn out for you. I'm glad you reached out for advice and I wish you peace with whatever decision feels best for your situation.
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If the GI bleed is not related to the condition(s) stated on her admission to hospice, then yes.

If it is related, then no but contact her hospice provider without delay (and if necessary jump up and down until they come and make sure she's comfortable and her symptoms are relieved).
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Fil has been hospitalized twice for gi bleeds within the past 12 months.

The first time was a bowel obstruction. They removed half his small intestine after which he was fed intravenously and in severe pain for 10 days. This was the latest of many anesthesia’s. His subsequent falls resulted in two hip and one back hairline fracture, resulting in more er visits and doctors. Since this op, he’s often nighttime incontinent.

Enter Act 2 when the aide discovered his diaper full of blood. The hosp admitted him and put him through colonscopy and endoscopy and finally figured out it was a big internal hemmeroid that had popped. He was there four days. Oh, and because he was covid positive at the time, no one could visit.

FIL doesn’t have dementia. I can only imagine things would be so much harder if they do.
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