Mother remains in big academic hospital after her SNF stay… which was filled with drama, her agitation/delerium that had their psych MD suspecting dementia. She became increasingly aggressive until one day she got low level physical with a staff member. Ambulance called and local hospital had to give her Haldol and Ativan because she was hitting at staffers, wrapping her Oxygen tube around neck. One notable thing is her O2 sat was 80 when EMS came, since she was not wearing it during her agitation. Not sure for how long. Head CT showed no stroke, and some evidence of possible vascular dementia, ischemic changes and prominent sulci/ global volume loss. No Dr seems to think Mich of the CT. Shes has since been only barely responsive at the sister hospital she was take.n to. Mostly asleep. Arousable for a few mins. A lot of unintelligible words,, a “Hi” and a “Bless your heart.” Recognized my hubby, and me other day. Today she wouldn’t make eye contact w me. Recognized her friend but not friends husband. Some staring and just not focusing.Dr says she might have had a hypoxic brain injury from the repeated removal of oxygen.
They found her vancomycin levels to be sky high, and kidney functions BAD. Yesterday’s eGFR was 15 creatinine was 3.15. Today’s slightly better at 15.9 and 2.94. They’ve been holding the Vanc. Giving IV fluids, and did a Foley cath since she’s been retaining urine for some reason. Big dilemma now is they want to do a feeding tube. Mother never wanted one. Her Medical POA paper states in general no invasive measures. She told me a while back she didn’t want a tube or to be coded etc. Her friends say she’s told them the same. Dr says her new baseline won’t be the same and she’ll never live at home. And you all who have followed my story here know she was barely functioning at home anyway.My issue is the docs seem to really want to tube feed her. They say they can stabilize her kidneys, but she needs time bought to do this with tube feeding. I feel like a monster denying her food, but my thoughts are … what for? So she can go to a locked SNF ( that’s the plan if she ever gets strength back to be mobile). Keep her alive for … locked SNF, oxygen dependence, damaged kidneys, mental / cognitive issues and aggression? I’ve asked for a palliative consult, and depending on how that goes, maybe I’ll ask for hospice. They seem puzzled that I’m not permitting a feeding tube. She’d yank it out anyway….
I so agree with you, what for? She knew when she was of sound mind that this was not an action she wanted and made sure you understood what she wanted. God bless her for giving you that gift.
Unfortunately, we are nothing but guinea pigs to medical science and I applaud you for keeping your moms wishes for her end of life journey.
May The Lord give you strength, courage and peace for this difficult time.
Ask for a hospice evaluation; if you aren't getting results from the folks you are talking to at the hospital, call the SW and/or Patient Advocate department.
The poking needs to stop; your mom needs peace and good meds.
Now I will tell you I am against tube feeding in most instances.
A person with dementia does not do well with "tubes" of any type.
If a person reaches end of life the body does not require food and fluids the way you or I do (this is one of the reasons a person stops eating and drinking, the body knows how to die). If a feeding tube is placed and the body is not processing what is being forced in it can create more problems.
Sorry about what you are going through. Be your mom's voice.
Your DUTY is to honor your mother's wishes. Tell the MDs you want hospice now for mother and you absolutely refuse further treatment. And kidney dialysis, even temporarily, should be absolutely out of the guestion. To my mind this sort of intervention in this awful long TORMENTING journey your mother is going through is ABUSIVE. The doctors should be discussing Hospice and Palliative care choices and it is UP TO YOU to demand these rights for your mom.
Ive tried to explain, but I don’t think they get how her mental issues, even if there is no dementia or brain damage, will prevent her from having any peace in SNF. Not to mention her inability to wear the O2 when agitated, failing mobility, a crippling host of spinal issues…
A palliative assessment seems a practical & reasonable approach to me. (I would do this myself). I would push back at any medicos thinking this is.. unusual or whatever. You are being a fantastic advocate & taking into consideration the known values/instructions (ie nothing invasive).
I met a family recently where the elder had noted *No invasive treatments. No fututile treatments*. The Medical Decision Maker had underlined the word *reversible* in the treatment section. That jumped out at me as a useful word. Because, just as you are facing, if you agree to a particular treatment & if it was NOT reversible, yes, in theory it could result in extended life but not fitting with the living will or quality of life values.
I hope there are some answers to help you, ir bounce more ideas off. I am here to listen.
Or more medical tests thay help shine more light onto a pathway that feels right.
OEdgar, your dear mom seems like she's nearing the end of her life now based on what's been happening lately. It can be a sudden decline, too. Once one thing goes wrong, suddenly it snowballs and 10 things go wrong. While it's difficult to make decisions with so many things being thrown at you all at once, I feel like you should think about what's best for mom now. Poking and prodding and tubes and heroic life sustaining measures, or allow her to be comfortable and let nature take its course in the meantime? I would (and did) choose hospice (for dad) at this point because mom has suffered enough. There is no happy ending to this story, as you've said, she's facing life in a SNF with locked doors. And the locked doors are nothing, really. It's what they represent. Dementia and loss of one's senses to the point they're trying to run off. To where? The massive confusion is awful. This lack of mental competence is a dreadful thing for all concerned, you and her both. I witnessed my mother die the long death in Memory Care Assisted Living for the last 3 yrs of her life. Her misery and longing for her dead parents and siblings was horrible. I prayed God would take her daily.
There is no quality of life left for mom no matter how you roll the dice here. You're not wrong with your decisions. As my late mother would often say, "make the sign of the cross and move forward". However that statement relates to your particular faith, bless you as you move forward.
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