Feeding tube dilemma; is this an irreversible medical decision?

This is going to come across as terribly blunt so imagine I'm putting my arm around you as I say it - Everything I have read about IV hydration and feeding tubes in advanced dementia tells me that at best they will buy a few extra months of very poor quality life, the dear woman is 89 years old and seems to be clearly demonstrating that she is ready to go. I'm sorry.

CP, I had the same reaction that CWillie did to your post.

I understand that you are sad that your mother's health has declined. Did you and she have conversations prior to her illness about what she wanted done or not done at the end? Would she have wanted to live this way?

Is Hospice available in your area? Having a Hospice evaluation might give you valuable insight into better ways to maintain your mother's comfort right now.

((((hugs))))))

My mother did have a feeding tube for reasons different than your mother. But there was a point where it became clear that she was not communicating with us anymore, not digesting the food, and declining in general. The decision was made to not feed her any longer, there was no argument about the decision, the doctor, staff at the nursing home, and our family all agreed. The tube was used from that point on to keep her hydrated and she peacefully passed away in two weeks. So in answer to your questions, the feeding is definitely not an irreversible decision, and keeping her hydrated is a kindness. Our doctors told us the body can easily go without food but dehydration is a painful way to die and it doesn’t take a full amount of hydration to keep a person comfortable. Blessings to you as you go through this, I remember it too well and it’s just never easy

If you are in the United States, ask for a hospice evaluation. Hospice services specialise in end-of-life care and they are the best people to help you with these terribly difficult decisions.

If you are not in the United States, if you wouldn't mind telling us what country or region you're in perhaps we can help find the nearest thing to hospice.

The thing about treatments such as hydration and feeding is that, while not painful, they are burdensome for the patient. Her body is gradually closing down its functions, and yet we are keeping them going by artificial means. At the same time, withdrawal of these life support treatments can feel like a terrible thing to do: as though we are giving up, or even worse "killing" our parent.

So the best thing to do is be guided by professionals who understand the natural processes in full and can help you decide what is truly in your mother's best interests. Whatever happens, it should be possible to ensure that your mother is comfortable, not afraid and free of pain.

Hello. I do not know the answer to your question. I just want you to know that your question and your situation touched my heart and I wish your mother a peaceful passing, and I pray that your love for your mother will comfort and sustain you at this difficult time. Know that you have done all you could for her, and that is all that truly counts. Peace to you.

Feeding tubes are money makers for the doctor and hospital. You're correct not to trust doctors much. When it comes down to it, it is really business to them.

I am sorry that you are having to experience this dilemma with your Mom.  As I read your information, it sounds like your Mom's body is shutting down and that she is physically dying.  This is a very hard situation to cope with.  I have listed some websites that discuss "End-of-Life" (Dying) and Hydration.  Copy and Paste these websites to your browser.  I hope that they can help you make the decisions that are appropriate for your Mom and that will keep her comfortable.

https://www.alz.org/national/documents/brochure_endoflifedecisions.pdf 
"END-OF-LIFE DECISIONS HONORING THE WISHES OF A PERSON WITH ALZHEIMER’S DISEASE"

https://americanhospice.org/caregiving/artificial-nutrition-and-hydration-at-the-end-of-life-beneficial-or-harmful/
"Artificial Nutrition and Hydration at the End of Life: Beneficial or Harmful?" By Cheryl Arenella MD, MPH

https://www.verywellhealth.com/artificial-nutrition-and-hydration-1132312 
"Artificial Nutrition and Hydration: Feeding Tubes and IV's at the End of Life"

https://www.caring.com/articles/end-stage-dementia
"Caring for Late Severe End Stage Dementia: A Caregiver's Guide"

https://www.medicalnewstoday.com/articles/320794.php
"What are the signs that someone is close to death?"

https://www.kevinmd.com/blog/2012/02/ready-death.html 
"How to get ready for death"

Praying that God will guide you.  {{Hugs}}

Thanks for all your posts, it helps getting feedback from people who have experienced the same.
I am from Portugal and I believe paliative care institutions in my country are not even close to what you have in the U.S. or other european countries. As so many suggested I will have a profesional to evaluate my mother´s situation.
daughter of1930, you said your doctor told you that "the body can easily go without food but dehydration is a painful way to die" .
This was also my plan, to hydrate her, subcutaneously or with the feeding tube, but no food, but I have also heard that there is no pain when dying dehydrated, in fact some say there is a kind of peaceful feeling.

Mom and I never talked about what she wanted me to do in a situation like this, so I just want her not to suffer, I would prefer her to go sooner but in peace.

Please let me know if you have any other thoughts about this, or experiences you would like to share

Thanks a lot

Cpampas, based on what I glean from some articles online, there are three types of palliative care within the Portuguese health care system, ranging from independent PCUs (Palliative Care Units, which are essentially hospices) to hospital based palliative care to home based teams.

Does the NNICC mean anything to you? "National Network of Integrated Continuous Care" it stands for, apparently, and this network is responsible for providing hospice services.

You could also look online for charities that offer support for end of life care.

Who is providing the caregiver? Is that a nursing agency or is the caregiver someone you hired yourself? Does the person have nursing skills?

The trouble with artificial hydration is that if your mother's kidneys are not functioning it is no good loading extra water into her.

Talk to your doctor, ask about palliative care or hospice services, and don't be afraid to be pushy. I'm very sorry you're going through this. I hope you get some help very quickly.

A feeding tube is reversible but...
Please do not do a feeding tube.
It can be confusing and many with Dementia will pull them out either the nasal one of the one that is placed into the stomach.
When a person is reaching the end of life the requirement for food lessens and to give food when the body is not using it can do more harm than good. The body will, as it slows down stop digesting the food so it may accumulate in the stomach or intestines causing discomfort possibly impaction that may require surgery.
Just hold her hand, tell her that you love her and she has nothing to worry about.

At this point what I wanted for my Husband was just that he be at peace, no discomfort. He was no longer the Loving, Vibrant, Funny, man that I had fallen in love with 35 years before. I told him I would be alright and that it was OK for him to go...

Thank you all, for your input. You have helped me so much.
I wouldnt imagine that the responses would be so overwhealming against feeding tubes in late stage dementia. All of you believe that at this stage is much better to let the natural course of life happen, rather than try to counter it, wich I now understand, after all it is a irreversible condition, and it only gets worse, so what would be the point of forcing the continious suffering.

I will seek help from hospice profesionals as you said CountryMouse, and thanks for your contacts, I will use them.

DeeAnna, the links you sent were so enlightning, I read them all, specialy the one from "americanhospice". Some times I had to stop reading and cryed, and I still need to find a way to accept within myself.
It is probably in our genetics to preserve the life of our loved ones, but I I know I will find a way to cope with it

All the best for you all
Carlos

Dear Carlos:
This is such a bumpy road we are all on. It seems you have received your answers. I tend to agree with your distrust of the medical people but have also found if you look hard enough there are some good people out there. It's unfortunate no one educated you prior to the tube going in. I was going to suggest an organization called Curadux which helps in complex situations by having access to experts and helping to review options and the best decisions. Take comfort in knowing you are not alone. There is a great group of people here and I think we keep in each other in thought...take care...

Although you did not indicate it, I believe your mother is or should be in Hospice? If so, they have professional people that help advise and guide you in this situation. Call them.

If she were in hospice, they would NOT have put in a feeding tube, but instead given her morphine to ease her transition. (Although I suspect the morphine is more for the benefit of the family than the patient). A lack of interest in food and drink is Nature's way of dying. It is hard on the caregivers, but the person dying is better off than being forced to have feeding tubes, shots, etc. Sometimes you just have to let go and let God (if you are religious). No one lives forever. What would you want for yourself? I have told everyone in my family my wishes.

Your mother is in what we call active dying. Her body is shutting down. I know this is a difficult time but my suggestion is to reach out to your local hospice organization. They are there for your mom and for you! God Bless you for being her care advocate!

So you're asking whether the "Sub-Q, - typical short name" e.g. under-the-skin hydration should be continued? It seems as though she may not be benefiting from this process. It also seems like she is not benefiting from the feeding tube. Perhaps you should seek Palliative Care.

My uncle wanted my dying grandfather hydrated. The nurse could not get a vein so he was sent to the emergency room by ambulance. Long story short, his organs were shutting down so he drowned in the fluid. Look into the palliative and Hospice programs in your country. Use morphine patch to ease her pain. Do not fear her death, allow her to die with dignity.

I feel your pain. I am going thru this with my mother who is also 89 but in a skilled nursing facility following a fall and stroke in the summer. She is now paralyzed on the right side and has limited use of her left arm and left leg. She has to be fed and hates not being able to do it herself. Speaking is also difficult so, she blinks or closes her eyes for yes and no. I have not been able to visit her in a month almost. I was injured and unable to drive and barely able to sit and had surgery Friday and must have another before the end of the year to remove a mass closing my esophagus off. I am in so much emotional pain not being able to see her because they called 2 weeks ago to tell me she has pneumonia. It is progressing with the meds they are giving her and I fear I will not be able to visit her before I lose her. The hospice nurse and my dr told me I can't see her since I am running fever and she is also. Pneumonia at this time would probably finish me off too if I caught it.
Even though she fights to speak, she has made it clear for years "NO STUPID TUBES". When God is ready for me, I'm going to leave this pain. She has a do not recuscitate form on file. She's told me she is ready to go. So, My family will honor her wishes to be creamated and her ashes returned to her birth home in the mountains of Oklahoma. She was a special lady who was active to the point of over doing it but, her gardens and cooking are legendary in our area. She will be missed by everyone. She wants to see her mom and other loved ones.
So yes, I feel your pain, the guilt of wishing they would live forever but for everything thing there is a season. May our parents seasons end peacefullyl

My Mom just turned 92 a month ago. Nine months ago, I took her in to the hospital because her speech was slurred and I knew she was having a stroke. She was in for a week then stayed for inpatient rehab.
She did not eat for FOUR months and lost about 50 lbs, and she is only about 5' 2". (she needed to lose about 30 lbs, though). The nursing staff and I tried to feed her anything and everything, including all the liquid supplements. She would eat little teeny bites and quit after only eating 5% of her food. Her hearing was bad. She had UTI's.
EVERYone thought she was a goner but me. Even a home health nurse told me it was time to put her in hospice. I thought it was just a bump in the road in part because she was fine before the stroke.
I had scheduled a Peg tube in March due to her poor eating and hydration, but the surgeon who put a stint in her carotid artery said it wasn't necessary and then another doc told me negative stories about the tubes getting infected or being pulled out or getting backed up. And she had periods of regaining her appetite. So, I cancelled the tube.
After Mom's 2nd hospital visit for dehydration, I had her admitted to a rehab facility, thinking they could do a better job of keeping her hydrated AND would get her mobile again and well-fed. They did none of that in the 6 weeks she was there, and the stay gave my disturbed niece an opportunity to repeatedly fill Mom's head with the notion that I didn't want her anymore.
So, I brought her home and had the tube put in a week later.
She magically got her appetite back just 2 days prior to the tube and hasn't lost it in the 6 months since.
Now I wish I'd done the tube sooner! She still doesn't have a good thirst drive, so it allows me to make up for that. I don't put food in it at all since her appetite has resumed, which is pretty amazing since she has had a hiatal hernia for years, which affects her ability to digest.
I had a PT coming to the house and she's back walking (with walker), laughing, talking on the phone, reading the newspaper, watching tv, and going with me to the grocery store.
Since Mom didn't have dementia before all this, the circumstances are different from yours but somewhat similar. I'm not trying to give you false hope; I just wanted to relay my positive experience.

I do not believe that the feeding tube is an irreversible medical decision.  Much depends now on who has medical power of attorney and/or whether your mother has a living will.

If your mother has a living will stating that she does not want extraordinary measures taken to prolong her life, then you will want to respect that. 

If you have the power of attorney, I think It is helpful to try to put yourself in the place of your mother, and try to imagine how she must be feeling.  Being hooked up to tubes is uncomfortable at best and can contribute to the likelihood of infection (and possibly a miserable and painful death by sepsis) as well as create a feeling of claustrophobia for some. 

I know what a terribly difficult time this is; in fact, it may possibly be the hardest thing that you ever have to experience.  It is heartbreaking and emotionally and intellectually difficult to arrive at what you feel is the best decision, but with guidance from physicians and perhaps even a good attorney, with your love and sincere desire to do the right thing, you can walk through this knowing that you gave it everything you had.

My SIL, who was all the way across North America from where my mother with me standing there in active dying of my late mother, screamed at me. "I'm sorry; what do you want me to do Cheri, mother is dying?" This was in regard to the feeding tube.

I am in this situation now. My dad has advanced Alzheimer's and was over medicated at a nursing home while he was there for rehab. He is now in an LTAC due to MRSA and swallowing difficulties which could be from the lethargy or the intubation. He now has an NG tube in order to get nourishment to him while it is determined if the swallow reflex can be recharged. The NG tube is temporary. If he cannot get back to swallowing he will not have a permanent tube surgically implanted in his stomach because his advanced directive states that if his condition is terminal he does not want to be artificially sustained. At that point hospice will be called to ease his transition. I have empathy for you and your situation. You want to do the right thing but sometimes it is hard to know what the right thing is.