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?
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.
I have been a nurse for 25 years, much of it in long term care. I believe feeding tubes are helpful for short term use while someone is recovering from an injury or illness, but should not be used for long term nutrition. Studies have shown that they will only help someone to live longer for a few short months(2 - 3). It doesn't seem to me like putting them through the trauma of surgery and having to adjust to the tube is worth it. Not to mention that people with dementia often pull them out.
The nourishment she needs now is love and kindness from people who care about her in a familiar place where she feels comfortable and at peace.
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.
When a person is declining the body has less and less use for food. A bit of food to keep the heart and the brain functioning. The amount of food that is processed through digestion is minimal. If you give her more food than her body can digest it will remain in the stomach and can cause pain, possible infection and possible impaction. (This may require a surgical remedy)
WE are the ones that are uncomfortable with seeing our loved ones not eating.
WE feel the hunger if we have not eaten.
We are brought up with the thought that food is love, food will make us better, food will soothe us, food is memories.
Food is all that but it is a source of energy and when your body no longer needs that energy the food is not needed.
There are other problems with feeding tubes and dementia. If this will be a permanent placement then she will have to have an anesthetic and a "minor" surgical procedure. The problem with this is that anesthesia can be problematic for people with dementia and she will be uncomfortable with the incision after the procedure.
Then there is the possibility that she will keep trying to remove it. (happens often with dementia patients)
If this will be a "ng" tube there is the discomfort with that as well as the process of inserting it.
Think back to what your Mom was like 20 years ago, 30 years ago....did she ever have a discussion with you about what her wishes would be?
Would she have wanted a feeding tube given the circumstances she is in now.
And as long as we are on the subject...have YOU made your wishes known to your loved ones? Might be a good topic to bring up ...maybe at dinner one evening.
Modern medicine allows us to keep people alive, but at what cost to quality of life? Managing a feeding tube is difficult enough with someone who has their full faculties; with dementia, the procedure itself can be risky and the day-to-day management incredibly difficult.
What quality of life would a feeding tube be adding?
I think if the OP's mother has advanced directives that specify her wishes, those should be followed. Unfortunately, many people did not take the step of specifying their wishes, so the POA or family member has to guess. Let's all do our loved ones a favor and get our wishes in writing!
Ask yourself if you are considering doing it for her or you. When you can answer this honestly you will know what your decision is.
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.