My mom is having a terrible time adjusting to the reality of having a feeding tube placed for the 2nd time due to acute dysphagia. She rebounded the first time after speech therapy. And the tube was removed. And she enjoyed great quality of life.
This time she says she doesn't have the will to fight it, can't go on, despondent. Her home health nurse suggested palliative care, I have an inquiry in. She is 79.
I know mileage varies but has anyone found the psychological or counseling aspect of such care to help a person through such a dark time?
There is no dementia etc. this was a surgical complication. She is capable of decision making. Not an end of life or terminal situation.
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).