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?
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.
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.
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.
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.
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.
Besides, it is another way for the GI doc and/or Hospital to make some money.
Of course every Alzheimer's is different and the decision is ultimately yours. Go on Google scholar (https://scholar.google.com/) and put in key words like peg tube elderly and see for yourself. Overall evidence-based research says advanced ages with feeding tubes do not improve quality of life or lifespan.
If she is in assisted living and is getting worse, she most likely will need permanent nursing home placement. Assisted living means they can still feed and toilet themselves.
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!
three mos, whilst getting apprvd for Medicaid..due to the fact that he had ten thousand in his bk account after putting the money in a Funeral trust done, anyway he began having swallow problems, the food was very often cold and unchewable due to the slowness of the atttendants, ...he was not being hand fed one morning with an attendant feeding 8 people who needed to be hand fed..
he was of course placed in a wheel chair where he slept..ok..but I never saw the nurses giving drinks,hydrating,at the station where they are placed and I started
by buying a blender and whipping him up smoothies in his room everyday with yogurt and fresh fruits...why do the nursing homes not do smoothies for these people that do not finnish their cold food...……….its so simple..and nutricious..whip up a batch and give it to the seniors...with of course anything fresh kale,spinich,
watermenlon andthing that can be purchased that day by the kitchen staff..I did this because there was a Walmart,food loin next door..so he finally got sicker..i suspect with a UTI...there were lapses of unattentivness of the staff..I caught them...Dad could not see his water..anyhow I finally was aware that one had to hire an attendant to make sure the attendants are doing their job..low staff on weekends....and again pay out of pocket for the personal attendants..thankgod I was going every day for five mos until Dad was transferredwithr toxic shock from a UTI...horror, to the hospital where he died peacefully in a much better environment with medical supervision ten days later.
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.
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.
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.