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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.

Casole,
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.
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I so hope with the problems Mom has that a DNR is in place. That she has assigned someone her Medical Proxy and that proxy contains what she wants and doesn't want.

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?
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Is she on antidepressants?
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casole May 10, 2024
Hi Peggy Sue,

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.
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Update:

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.
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Sleepingbear May 10, 2024
Wow, I'm really impressed with how resourceful you have been in trying to help your mom. Such a gift to her. I think it so difficult to step back and remember that there are times when we really cannot solve their problem or cure their ills. And as a nurse who works in a psychiatric crisis center, I truly appreciate the profoundness of depression and other mental health issues. That said, I also know that I can't totally fix things but can set up with resources for the best outcomes. And a family member in crisis is out of the ballpark when it comes to trying to figure where you end and they begin. Thank you for posting. I had never thought of engaging palliative care.
I
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I’m sorry your mother is facing this. Did she have another neck surgery?
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casole Apr 20, 2024
Hi Oedgar23,

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.
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I have palliative care in place for cancer. I find this team of a social worker and M.D. (who retired in Dec w/o mentioning it to me!) to be condescending and minimizing when it comes to understanding terminal illness in general. They ask questions like, "have you ever thought of ending your life?" And "have you ever felt sad?" It's illogical NOT to have felt sad or to have thought of ending ones life when faced with very painful or difficult situations! I was shocked at their lack of insight, and surprise at my answers to their questions, frankly. A waste of time. But, the MD wrote me a prescription for anti depressants which have helped me quite a bit. So that component wad good.

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.
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casole Apr 20, 2024
Hi,

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.
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My husband‘s palliative care nurse practitioner was excellent, and offered him opportunities to talk about feelings regarding end of life issues and decisions. She sensed when he was wanting to talk about things and backed off when he wasn’t. I don’t know that palliative care provides counselors per se but I would imagine they could refer a patient. The nurse practitioner can prescribe and would likely discuss antidepressants or anti-anxiety meds with your mom. It’s all about improving quality of life when you have serious, chronic illnesses.

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).
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casole Apr 19, 2024
That's exactly the kind of person I think my mom would benefit from talking to. As much as we can acknowledge and validate her justifiable feelings about this dreadful situation, a different voice can be a big help. Thank you for sharing your positive experience.
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In general palliative care is an acknowledgement that you no longer wish to pursue any life extending treatments and medications, it's essentially hospice care without the formal designation or benefits..... I'm not sure what you are hoping to accomplish with palliative care.
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MissesJ Apr 20, 2024
Palliative care “…focuses on the pain, symptoms and stress of serious illness most often as an adjunct to curative care modalities.” nhpco.org
It has nothing to do with giving up on treatment or life.
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The issue we found with a feeding tube in a mentally competent person was this—my mother’s feeding tube was placed post stroke when we had a small army of doctors convinced that it would be temporary, just a bridge to help until recovery. She went to rehab, worked on recovery valiantly, but no recovery happened. In fact, over time, she lost more skills. But she remained mentally intact and miserable in a completely non functional body. So when do you pull the feeding tube and decide to starve a person who’s awake and aware? The answer is never. So it went on for four years, four long years I’ll never know how she survived in total misery. I’d agree your mother can and should receive some counseling concerning her decision. She also should be respected for realizing the full implications of what another feeding tube can mean. Tasting food is one of our basic pleasures, to be permanently robbed of that in favor of formula being sent in a tube would be a tough thing for anyone
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casole Apr 19, 2024
Thank you. I'm so sorry your mom (and you) went thru that. I will respect whatever wishes she has. Many people live on tubes and adjust. I also understand that some do not.
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You have filed this under depression, and I am certain there is some depression involved.
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.
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I would think palliative care would work with her, given that she has a chronic condition and is not coping well.
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).
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