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Due to a major stroke, my Mom cannot eat or drink properly. The stroke has also made her dementia worse. I'm wondering what others have experienced with a feeding tube in a parent with some dementia plus GERD. Her MD told me she will need to permanently stay in skilled nursing due to the medical requirements associated with a feeding tube.

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I'm so sorry that you are faced with this. It's a horribly dilemma for you.

If there are no advanced directives against feeding tubes (which, in this case would likely fall into extreme measures) then you'll probably have to follow through with the skilled nursing care. Pam has the background on this, so read her answer.

If this were me or someone I loved, I'd opt for hospice care, but then I don't know the full story for your situation.

This is a supreme example of getting down in writing the wishes of the individual under differing circumstances before these things happen.

Talk things through with the doctor and no matter what your decision is ask for palliative care for your mom. Palliative care is comfort care but can still be used with feeding tubes and other measures that keep the body alive.

Please keep us posted on how you are doing,
Carol
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I was faced with this, my Mom had a living will. But to be honest if she is needing a feeding tube I would consider Hospice also. Dementia just gets worse with every sickness or surgery. I chose not to put my Mother through anymore I brought her home and she passed away with my Brother and I by her side, it was the right choice for us, but everybody is different the most important thing is to have peace with your choice.
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If this were my mom, I'd opt to keep her comfortable on Hospice care. I would think that a feeding tube with scare and discomfort the dementia patient, who would probably try to pull it out.

I'm so sorry that you are having to go through this painful dilemma.
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As I understand it, it can be very difficult for persons with dementia to remember not to pull on the tube. Often they must be restrained.

When a feeding tube was recommended for my husband and I researched it, I didn't find much in the way of evidence that it has any benefits for elderly persons in general and especially for dementia patients. We opted not to have it.

How old is your mother? What would the alternative be? If she doesn't get a feeding tube, where will she live? How will she eat? Would she be eligible for hospice care?

My brother had a feeding tube while he was recovering from throat cancer. That, in my opinion, is a very appropriate use of that technology. There was a good chance he would improve and not require permanent use. He had no cognitive issues and was not at risk of pulling it out or needing restraint. He did recover, is cancer-free, and is eating his wife's good cooking.

I think your mother's situation is very different. Please, do the research for yourself, regarding feeding tubes in elderly persons with dementia.
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If you are being tube fed, your dementia is now advanced stage. Yes, it does take skilled nursing care to do this, unless you are able and willing to take a whole lot of training yourself.
Since you have no advanced directives that say "no feeding tube", the staff will feed her as directed by the MD. With GERD, it is very possible she will regurgitate and aspirate some of the feeding material. She may not be able to tell that to the nurses. This leads to aspiration pneumonia and death.
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A feeding tube is not going to improve her life. It may prolong it. If she is suffering in anyway I would not recommend the tube. In fact I would not recommend the tube considering her situation. My mother in law with dementia was allowed just to go to sleep. The feeding tube would have only prolonged her misery.
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Now wait a minute - two thoughts - if someone is not swallowing due to dementia alone, it is one thing, and it is true that feeding tubes do not help. But if there is dysphagia due to stroke, particularly brain stem stroke, it is a different matter, even with some degree of dementia, as long as not so severe hat the person can't remember not to pull out the tube and would end up needing restraints.

Also, just having a GT does not usually mean you can't be at home - anybody can learn to do tube feeds - there are facility rules though about who can do it and what they can accept. A lot of skilled nursing facilities are set up to look and feel more like assisted living these days. One other important thing is to have a good dysphagia eval, usually with speech therapist sometimes OTs do it, so you know what is safe to take orally (if anything) just as a quality of life issue. If they are OK with foods but not liquids, consider Frazier protocol too.
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When you say she cannot eat or drink properly, is this because she doesn't have control of her hands/arms or is it because she can't swallow well? Or both? Or doesn't have the cognitive recognition she needs to eat? In any event, she would benefit from rehabilitation services like occupational therapy to help her possibly regain her ability to eat, whatever the problem is. However, if the stroke was major, it will be difficult for her to recover without any dementia, never mind with dementia. Keep an eye on how she's doing at the nursing home, but taking her home and trying to manage this much is a recipe for increased suffering on your part and her part too. Strokes and dementia both mess up thinking and learning skills. Our old rule of thumb was that if the person with a stroke can talk reasonably well, they won't be able to reason. If they can't talk, lots of time they can think through stuff pretty well. Chances are the NG tube will be very irritating and she won't tolerate it for long. As suggested, get in touch with hospice. It's time.
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I agree with vstefans. My 81 y/o mom is currently on a Gtube, I have no problems with caring for her tube--it is very easy and is giving her a quite a good second chance at recovery from a broken hip. My mom was treated like a number, left without assistance to eat for 2 months in the hospital.
It started when they made her walk within hours after her clean femur break was repaired with a couple of screws. It broke into 4 pieces and the hospital didn't notice for 2 weeks. They made her walk on it again and again, and no one reported any problems. Only after I pulled down the sheet in front of the doctor to show him her swollen legs. Next they placed a rod in her femur, and for 2.5 months they were leaving food trays out of her reach, and leaving her to fend for herself with bad arthritis she couldn't even hold the utensils.
Now she's recovering at home, gaining weight and strength, and learning to swallow and eat all over again. Prior to her fall she was active, independent and we were planning a trip to Aruba for her 81st bday. Medical advice is based on statistical numbers, not the unique individuals we are. They are quick to make you a number on a page. Do what is best for your situation.
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The question, in the absence of an advance directive, is how bad is the dementia?
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