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….
Your mother expressed her wish not to have any tubes. You should honor that.
And I think hospice is the right thing.
(((hugs)))
‘None of the other issues will be gone. I would follow what she has made clear she wants.
Regarding the Pallative care. It could be a bit of wait and see right now. Once she is on a non curative status then billing issues could pop up for a hospital??
Since you didn’t accept their work around on that issue with the tube, they probably have a sign off procedure on next steps. Perhaps so many hours need to pass while they watch for how she responds to status quo before having legal authority to suggest next steps….
If she improves you will need to figure out if an acute care hospital might be the next step which might be paid for by Medicare. You haven’t told them to stop caring for her only that you don’t choose tube feeding.
I hope you get some rest along the way. I’m glad your DH is so supportive.
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.
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.
Med student asked about a surgical one and I said NO. Mother had said many times she was done with surgery.
When my hubs had an NG tube to suction out stomach contents after a second surgery due to a botched gallbladder removal , a whole bunch of med students came in with the “ teacher” who said hubs tube could be removed. These med students turned into toddlers begging to be the one to pull it out .
I’m a retired RN . Have put in and removed NG tubes countless times . You literally just pull it out . There is no fancy technique , yet they begged . I’ve also heard them talk to each other . It becomes a competition , who got to do what and who didn’t.
NG tubes are also often used to hook up to suction to empty stomach contents, besides for feeding.
I'm not a fan of feeding tubes unless it is for a younger person who can drive, walk, talk, go to their job etc.
The other person I know with a feeding tube had bad results from bariatric surgery. She cannot eat real food. She has a feeding tube every night for the rest of her life. She's not a fan of it. But she drives, walks, has a job etc.
I remember your other threads. If I recall your mother is a smoker? She will never be happy in any locked down facility and always seeking to go home so she can smoke.
I've had one experience with a feeding tube and before that I was clueless. My boyfriends Dad had very late stage dementia/alzheimers at a young age. The family put him on a feeding tube. I thought a feeding tube was like a 30 minute meal like you and I have. No it is not like that. He had a port (I guess into his stomach). The port was hooked up to a tube and a pump and the formula every night. He had had the feeding tube connected for 12 hours in bed every night and this pump pumped the nutrition into his body. Since he rolled around in bed sometimes the tube disconnected and pumped the nutrition all over the bed. He was non verbal and could not sit up in a wheel chair without straps when the family installed the feeding tube. He lived for several years after this. I think the family could not say goodbye.
I think feeding tubes are uncomfortable for the client.
I wish you the best with your decisions.
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…
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.
and her life would not be of great quality , IMO I would go with what your mother said.
I agree that your mother would be anxious , agitated pulling at the feeding tube , oxygen etc, or drugged to the gills to make her stop . Either way not a great quality of life.
“So when are feeding tubes a good idea? Feeding tubes can be helpful when the main cause of the eating problem is likely to get better. For example, they can help people who are recovering from a brain injury, stroke, or injury.
“The tubes also make sense for people who have difficulty swallowing and are not in the last stages of an illness that can’t be cured. For example, they can help people with Parkinson’s disease or people with amyotrophic lateral sclerosis (Lou Gehrig’s disease).”
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.
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.