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Thanks for your update to us below.
I am glad your mom is comfortable just now, and having the goal of a "walk" sounds positive. The best news is that her mood is so much better.
I know you know that this is a reprieve and that you will make good use of a little light.
Wishing you the very best.
Its my understanding that once a feeding tube is placed, it can't be removed unless a doctor orders it or a patient is competent to ask to have it removed. So, if Mom becomes incompetent to make informed decisions, the proxy is needed. I think, too, if its been determined that the tube is a lifestaining, to get it removed would mean Hospice getting involved.
Remember years ago the man who wanted his wife's feeding tube removed and he had to go to Court?
No. She did not want to try that.
The good news is she seems to have turned a corner and we are not as much in a crisis situation anymore, my update is below.
Thank you for asking.
We did have the palliative nurse come for an evaluation. The best thing that came of it I would say is she asked my mom what her goals were. It was the first time she verbalized wanting to go for a walk, etc. It was funny tho because she also said she wanted that to be the only visit. But she did agree to another appt in July.
It's hard when every new visit is an assessment or evaluation and very little seems to actually get done!
Anyway, she's doing a lot better mentally, the dark dark cloud seems to have lifted and everyday she's doing something she didn't do before. I believe she still had hospital delirium residue. She's working with the speech pathologist who helped her last time, and she likes her physical therapist.
I had also engaged with our local Elder Mental Health Outreach Team and still on a wait list for that 😤.
I do worry of course because with aging new issues always can and will likely pop up, but at this moment in time things are on an upward trajectory overall so I will just be happy for that in this moment. 🙏
Anyway, that was the palliative experience for us. Another comment is it's hard also when many of these folks are so damn young lol!! I'm 58 and when I hear "she's adorable" "she's so cute" about my mom I want to punch them. And we hear a lot of suggestions we know all about. I always figure if I can get one useful piece of advice or information I didn't know then that's a win . Rant over.
I
Thank you for asking, no she did not have another surgery. This episode came on quite suddenly. No root cause could be found after about 10 days in the hospital with various scans and tests but as before the swallow study pointed to the hardware from the fusion as potentially limiting or partial blocking the way to her stomach...
Silent aspiration was the result of that study so she's on strict NPO and in a deep deep depression... All I can do is sit with her and validate her feelings, and hope that our initial visit with the hospice folks on Monday can provide some guidance.
That said, I'm sure not all palliative care teams have to be told to Google what symptoms mean, or are so obtuse as my team is. If you can find a good team for your mom, it may make a huge difference for her.
Good luck in your quest.
I'm so sorry to hear your team is so dense for lack of a better word! Thank you for sharing your experience with me.
Just having someone come visit you who is comfortable talking about your fears, death, hospice, etc can provide great psychological support. As far as I’m concerned, there’s no downside to palliative care if someone qualifies(and of course you can discontinue at any time).
It has nothing to do with giving up on treatment or life.
There is also, however CHOICE involved.
As a retired RN I have seen enough that certain things are written clearly in addendums on my advance directive as to what I will decline now and always (I am currently 81 but it has been there for decades); among those is the placement of a feeding tube for any reason, even temorarily, either NG or PEG, and any other artificially introduced feeding (IV TPN et al). When I can no longer feed myself the nourishment required for life it is my choice to die, something that we all will do. I feel the same about dialysis, chemo at my age, and etc.
This isn't about depression. It is about reality for me. It is about how I feel about quality of life.
This also isn't about YOUR choice. It is about your mother's choice. And she is the one who should be making this decision.
Please discuss what you mother wants with her.
Then go with her to her doctor to discuss this.
The doctor can then discuss with her the need to see a counselor to comb out her wishes and the reasons for it, to decide whether a trial of a mild anti-depressant might help, or if this is a decision she has long help for her own quality of life.
Then referral is made to palliative care, hospice, and etc.
Your mother may also wish to explore options for VSED in future, if that is her wish. It is a process, not a decision made on a whim.
Unfortunately, in the USA we seem to have developed a hesitancy not to acknowledge any of these issues, and not to discuss them with the very person whose very life is involved.
I hope you will discuss all this with your mother and she will feel free to discuss all of this with her medical team.
I wonder if it would help her to join a forum/Facebook group for others living with feeding tubes. I’m sure there are YouTube videos of people living and thriving with this condition (that you could screen and share with her).