Mom is only 69 and healthy in every way except she has advanced Alzheimers. The doctor says she is stage 7d (7f being the final end stage, or death). She just entered Hospice care this week and they mentioned something I've never heard of before--Do Not Hospitalize orders, in case she gets a future infection or something like that. Does anyone have experience with that? What are your thoughts on it? She keeps getting bedsores and infections even with very good care and is going to the hospital once a month or so with something.

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What is the hospital doing for your mother that can't be done for her at home?

I agree that it takes a certain, painful mental adjustment to comprehend that taking your acutely sick loved one to hospital is not the right move. The penny dropped for me when my mother was in rehab post-stroke, her b.p. and respirations suddenly fell, I called the nurse, the nurse came... and nothing happened. I realised I'd been expecting the nurse to go into overdrive and get my mother transferred back to hospital stat. More slowly it dawned on me that the reason that the nurse had stood calmly by and watched was that in any case there would have been no point in calling an ambulance. To take my mother to the ER... for what? For aggressive resuscitation? For intensive therapy? These were not procedures my mother could have endured. There would have been no point in taking her to hospital.

Your mother's symptoms can be relieved at home. The disease that is killing her, sadly, cannot be cured anywhere. Keeping her out of the mechanised, impersonal, frightening environment that most hospitals are is much the kinder option.

But meanwhile, I find it difficult to square "keeps getting bedsores" and "very good care." It is hard work to prevent bedsores in a bed bound and/or immobile patient, but it is not impossible and it certainly should not "keep" happening. Is your mother supplied with the correct equipment for her physical needs? Who is caring for her day to day, apart from the hospice team?
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The lady I care for is under hospice care and we can't call an ambulance or take her to the hospital, either. The lady who did the initial paperwork asked my dad if he would take her to the hospital if he felt she needs it, he said yes and she said that is grounds for hospice termination because hospice means you don't speed up or slow down death and the hospital is slowing it down. You have to call the hospice and get instructions, I never had to do it yet so idk what happens. I was able to get her antibiotics because I felt she had a uti based on her symptoms from another time. The hospice won't provide the antibiotics since it's curing something but the nurse did call her dr for a script. Another weird thing is they only changed the catheter insert part once in 11 months and it was only because it fell out. I find that terrible and I'm in constant fear of sepsis but their policy is to not change it unless it's broke.She does change the tube/bag every 6 weeks when I ask. I don't really agree but I guess if you end up feeling like you don't want to agree to the terms, you can leave hospice and return later if you change your mind. I know that some people get so much from it and some don't. It's what you think is best for your loved one and your family.
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My mom is much older (93) and has dementia, as well a several other issues. She is not yet on Hospuce; we have chosen to do palliative care at this time. We have a Do Not Transport order, meaning that they will not transport her to the hospital for a fall, worsening heart or lung issues.

Every time mom goes to the hospital, she comes back in worse shape, contractures, spinal fractures, etc. She is not incontinent and i fear her getting C--diff more than almost anything, as she has a lifelong terror of diarrhea.

This is a difficult decision. We decided that at this point, our main goal is to keep mom comfortable and in no psychic or physical pain. Whatever can be done at the nh, that is the extent to which her symptoms will be treated.

I wish you well in coming to terms with this.
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