She has been going downhill more quickly during the past 3 months. She has been pocketing her food and chewing less and less. We recently found out that we may soon need to make the decision to have a feeding tube put in. They do not deal with feeding tubes in her present facility. We realize that moving her to a different facility at this point will be extremely difficult for her, not to mention dealing with the feeding tube. She is not able to make new friends at this point, and we are concerned with a move. But of course, she needs to be nourished somehow. I am so unsure on what decision we should make. She has no quality-of-life right now, but she is still very aware of people around her. We may have a few months left before making this decision, but I can’t get it off my mind. Any thoughts?
Does your mother have an Advanced Medical Directive? Has she ever talked about her feelings on this? Sometimes, that helps in sorting things out.
I would read as much as possible about the studies, reports, opinions from professional organizations, etc. on dementia patients and tube feeding. I was surprised at what I found. It wasn't what I expected. I would ask the medical professionals you are dealing with if they can tell you how much longer your mother would survive with tube feeding and what the risks are. (If she pulls on the tube, how does physical restraint work and would you be comfortable with that?) And compare that with your research.
The Alzheimers Association has an opinion based on their research. I'm sending you that link by PM.
A PEG tube is placed by a surgeon through the abdominal wall directly into the stomach and allows periodic feeding by "pushing" the food (a pre=mixed liquified formula) through the tube with a syringe. Receiving food this way can be painful for the patient. This is a permanent solution for patients who can not get adequate nutrition by mouth.
One of my grandmothers had an NG tube while she underwent P/T for swallowing difficulties. The tube was removed when her swallowing improved following therapy. This grandmother did not have dementia.
My other grandmother had Alzheimer's and had a PEG tube inserted in the hope that getting proper nutrition would improve her mental status. It didn't help her mental status, though she was tube fed for several months (possibly a year or so.) Her kids had to make the decision to discontinue tube feeding. At that point they moved her from NH to the home of one of her sons, where she died about a week later.
You need to know what kind of a feeding tube the facility is suggesting and WHY. I would also seriously consider your statement that she "has no quality of life" -- do you really want to prolong that?
Also you state that you "may have a few months left before making this decision" -- I'd advise you to focus on your present situation, enjoy spending time with her while she is still very aware of the people around her, do your research into the "what" and "why" of the feeding tube suggestion, but don't worry about it until you MUST decide. Lots of things can happen while an elderly loved one finishes out life's journey, and you may be spending your energy worrying about a situation that won't actually materialize.
My point is if your Mom already has dementia, and she is prone to picking or removing scabs, bandaids, IVs etc, make sure her doctor knows this habit. I would try alternative food preparations like ground, puréed, etc before this last ditch effort. If her assisted living does not help to feed residents with meals, she may need to move to NH, where they have aids that actually feed residents that can’t manage it anymore. At Moms NH many people have one-on-one help at mealtime.
Feeding tubes get recommended by professionals because it is their responsibility to help prevent a person from aspirating or being malnourished or dehydrated. Or at least letting family know options. Nursing and physicians and social workers in nursing homes should discuss all this with the family.
Feeding tubes are life-saving for someone to keep them alive while they recover from an accident or a stroke.
If you have the DPOA you make the choice based on what your loved one expressed or wrote in their living will.
You do not have to agree to the recommendations for a feeding tube.
You do not even have to agree to a change in diet texture or thickened liquids. Some things are for comfort measures-each family has to decide what is right for them and their loved one.
I personally would not agree to a feeding tube for myself or a loved one if they had dementia and were no longer eating. I would consider that a sign that their body and brain are shutting down. I would agree to a modified diet and thickened liquids if it is easier and more comfortable for the patient to eat.
They told me that they would put a feeding tube in my mother too. I explained this to her when she was lucid for a moment and she understood. It helped for a while, but eventually she had to be on a puréed diet.
Have you considered Hospice? If you have not had a Care Conference in a while, it may be time to call one.