What can I do if I think I made a mistake deciding to keep my spouse alive with a feeding tube?

Let me start by saying how very sorry I am for the situation you are living. It is one we all fear happening to our loved ones. Your first priority should be to sit with the doctor and discuss a DNR ( Do Not Resuscitate ), which dictates that if your husband stops breathing, his heart stops or something similar no extreme measures will be taken, meaning nothing will be done to stop him from dying or to bring him back from dead to living. While that may seem extreme or even cruel, consider the condition he is in now and then consider if he has another stroke or a grand mal seizure that leaves him with further impaired functioning. Would the man you married want to live the life he is now living or the life he would have to live if anything else happened to him medically or would he consider this existing? You are one of the few people, possibly the only person, who knows the answer to that question. Again, as the doctor will explain, a DNR will advise all carers that, in the event of a medical crisis, no interventions are to be taken so that he can be left to go in peace rather than be forced to stay and be kept on machines. This has to be your choice as his next of kin but it is definitely something that needs to be discussed immediately, before another crisis occurs.
If you are not prepared to initiate a DNR you may have to go to court to be named guardian for your husband so that you and you alone can make the medical decisions for him, since you and his daughter cannot agree on the way to proceed with his care. Given your questions above about proxys I am thinking that there is not one in place naming someone to be the voice for your husband when he is no longer able to speak for himself. I do not know how long ago his dementia was diagnosed but if he was formally diagnosed while still competent his doctor should have discussed this with you in depth. If he/she did not I am deeply sorry for the impact you and your family are now experiencing due to their negligence. Far too many families find themselves in your exact shoes without any planning in place. My hope for you is that you and your husband had a close relationship where you were able to talk openly about your wants and needs if these situations ever arose in your later years. With that you may have some clarity and peace of mind.
I wish you peace going forward. You are on a path filled with bumps and steep curves. Be sure to lean on any and all support you have available to you, including here. This is far too much to take on alone, nor is there any reason to do so.
Love your husband through this but remember to love yourself as well. I look at dementia as something that needs a village to tend to it. Let the carers tend to his medical and physical needs. Then you can get back to being his wife, in whatever way that works for the two of you at this point in his disease. Treasure the moments you have with him as you will not know which will be your last.
Take very gentle loving care of yourself. With peace, gratitude and grace XO

It is much more difficult to have a tube removed than to refuse it in the first place. Fortunately my husband (and I ) had advance directives to never have a feeding tube inserted, but when I made the decision against it , his 2 sons and their wives were horrified. My husband's dementia was mild, but the effects of the massive stroke--unable to use the left side of his body, loss of central vision--left only a future where he would be bedridden and unable to even read or watch TV. Twenty years before we had watched my stepfather slowly whither away (took 15 months) attached to a feeding tube unable to talk--just looked to slowly be losing his mind, and neither I nor my husband wanted to end like that...not to mention the cost and strain on the caregiver. My in-laws cut me out, even though my husband and I were happily married 32 years. Fortunately I have my own children and they are totally in agreement with my plans, my nurse daughter is my health care proxy. Yes, it is painful to watch someone starve, but he seemed to be in no pain and I would choose the same for myself as being far more humane than a permanent feeding tube.

Holly, speak with the social worker and express concern about the continued downward spiral. How old is he? Can you put a 'do not resuscitate' in place? Is this a second marriage for you? Is there a health care proxy in place? Does his daughter have any regrets about the feeding tube?

Hollymore, the feeding tube will not keep him alive as his organs shut down. Please talk to the doctor about prognosis with or without the tube.

So sorry you're going through this...we had a feeding tube placed with my mother post stroke. It remained for several years though there was no real recovery we'd been told was possible. She reached a point, the one it sounds as if your husband is experiencing, where she was no longer digesting the food placed in the tube. Her body was slowly shutting down. We knew we'd never "starve" her, no one likes the thought of anything like that. The nursing staff recommended both slowing the rate of the feed and diluting the feed with water. This kept her comfortable and hydrated. She drifted into a coma like state where she no longer responded to us and passed away in about two weeks. She was peaceful. I hope you can find a peaceful resolution for your husband, it's never easy. Blessings

If the residue is just building up in his stomach, there's obviously very little that leaving it in is doing. Can you talk to a social worker privately at the facility and ask her about hospice? I have a feeling that hospice would not remove the tube unless it were making him uncomfortable, and if the rec is made for hospice by the doc, the daughter might pay attention and agree, especially if she's told it could be 6 mos as an outlook for death.

We just went through this with my dad not eating etc! Then we all sat together one day and talked about what would he want this is not what WE want for him its all about dad-so we all decided that dad would NOT want to have a feeding tube or any thing else to prolong something that is going to happen eventually-remember think about him not yourselves! Its a very hard thing but in the end you will all feel better that he left on his own terms! My dad just passed one week ago.

I am so sorry for your situation. I would consult hospice and honestly, think about changing doctors. If in fact your husband is slipping away and his body is shutting down, someone needs to explain what impact that feeding tube could be having. Having something sitting in your stomach because your body no longer digests, can not be comfortable. As for the DNR...considering your husband's fragile state, it should also be explained what heroic measures can have on his body. These are things that hospice can help you understand and your step daughter. When a person is passing, what "we" imagine or project isn't always what is actually the case. For example, people assume a person is suffering/starving when not receiving nutrition, when they may actually be more uncomfortable because they're being fed/hydrated and are unable to digest/absorb it. I don't know if his "output" (urine/bm) correlates with his overall body functioning? I hope that this time doesn't become fraught with friction between you and his daughter. That is the last thing you need to deal with. Wishing you peace and strength.

It is possible to remove a tube or stop using it, and just let him have whatever tastes of anything that give him any pleasure, or just keep the mouth and lips moistened if he really can't do that. OTOH, if he is getting anything out of being alive though - maybe impaired, but not vegetative - and the stroke was brainstem, the reason for the tube was dysphagia, and in that case the rest of the GI tract should keep working. If he would be aware of hunger and thirst then it is not so wrong to have put in a tube, and the focus should be on any human contact or activity that would make a good memory and that he could enjoy in any way. That might be where his daughter is coming from, though it also sounds like she may just not ready to let go. These things are controversial - feeding tubes are usually not recommended in really end-stage dementia as they do not add to either quality or quantity of life, but they are not all bad either and they can add years to life and improve health for many people too. So, whatever else happens, you do not have to feel that you made a mistake!

If things really are shutting down, that tube will not keep him alive indefinitely in any event. I like Heather's comment, even though just having the tube probably does not hurt and there might be other reasons for the high residuals/slow stomach emptying that could be helped medically. Worth the discussion with a compasssionate medical person to see what could be done, and your opinion on whether he is in pain would be very pertinent. Someone like that can try and help explain more to your daughter if she is not grasping what is happening and thinking recovery, imrpovement, or stabilization is in the works when it isn't. The decision you make with your heart and your head - lovingly but realistically - cannot really be "a mistake."

You may have wished to keep your husband alive when his medical condition was better than it is now. At least, that is a perfectly acceptable thing to think and to say. But now, he seems to be beyond hope, and it is reasonable that you might want to change what you think must be done. No one should blame you for "re-visiting" your opinion.
So... consultation with doctors and specialists who agree that his feeding tube should be removed might give you the grounds you may need to convince any doubters in your family that your husband's wishes would be to let him go.
That will be a sad time for you all, but it would be what he would have wanted.
Just a suggestion as to how to proceed...