My mom was always a picky eater, so placing her in the nursing home I knew eating would be a problem. She has been in for 6 weeks and now has lost 20 pounds. She has severe alzheimers but still pretty healthy. She is a pacer and is on the move all day. She doesn't sit for any length of time. At the dinner table she started putting her head down, I think because she doesn't want to eat the food. They called me a few days ago, and said she is not wanting to drink much and is getting dehydrated. I have been going daily to try to get her to drink some gatorade and eat. She will take a few sips and probably in 3 hours drank 5 ounces. She won't open her mouth when they try to spoon feed her food or medicine. She just takes tiny bites if at all. Her bun and creatine are high, but potassium and sodium are normal. Her bun and creatine were better today then Wednesday. If levels get to high then asked me if I wanted to give her an iv or possible feeding tube. She paces and so I don't know how she can have an iv unless she is sedated. She is not aspirating food but just seems to have lost her appetite to eat. Dr put her on remeron to try to stimulate appetite. Dr said give it another 2 weeks. In 2 weeks she will be gone. Anyway, she is a fighter and always had a strong will to live, and I know always wanted to keep living. She is not laying in a bed looking at the wall. She paces around, still says I have to pee an then sits on toilet. She still says Im thirsty or Im hungry, then doesn't eat or drink much. Maybe they are just familiar phrases. I don't know if she would try to remove the feeding tube, but if it is covered up with her clothes maybe not, unless it hurts. If she does pull it out then I guess we can say we tried. Because she is still so mobile and talking, I think she may benefit from the feeding tube. Would love for so input on my situation.
With that kind of weight loss, I expect that your mother is eligible for Hospice. Have you considered that?
The feeding tube came up for my husband, twice. I did a little Googling on feeding tubes in the elderly with dementia. This researcher's remark represents a view I came across repeatedly: “We found that there is no research evidence that tube feeding prolongs survival or improves the quality of life for people with advanced dementia,” said lead author Elizabeth Sampson, M.D. “In fact, some studies suggest that tube feeding may have an effect opposite to the desired and actually increase mortality, morbidity and reduce quality of life.”
My husband was opposed to a feeding tube in his situation, and we decided against it, both times. The first time a very young speech therapist was presenting the option to us. She told us all the presumed benefits. (She did not mention that dementia patients often rip the tube out and to prevent this are sometimes restrained.) When we told her the decision was not to have a tube, she left the room to update the chart. When she came back she had tears in her eyes. She said, "I wish my Grandfather had not had a tube!"
My brother recently had a feeding tube, while he was recovering from treatment for throat cancer. He is now eating normally. I think that is exactly the appropriate use of the device -- as a temporary measure while someone improves to the point they can eat again. Or perhaps even as a permanent solution if they have a high quality of life. But when someone is approaching the end of their life anyway, I personally just do not see the value.
But that is a very personal decision. And I do know at least one person who had a tube for her loved one because of her religious beliefs.
I certainly would not criticize you for either decision. You asked for input and I'm just frankly giving you mine.
I do suggest that you do a little research with Google and have the doctor explain exactly how this will work, the benefits and risks as he or she sees them.
This is an extremely tough decision to have to make. My warm regards to you and to your mother, and I wish you peace, whatever you decide.
I will add that we were told with our father, that putting in a feeding tube at this stage with him, will not prolong his life, but it will cause much discomfort due to bloating with the digestive tract shutting down.
I think having hospice come in will be a good idea. Hospice does not mean the end...they can in some cases turn things around.
My heart goes out to you are you make these difficult decisions.
There are some good articles in the magazine CURE, which is primarily directed toward the cancer experience, of which lack of taste during chemo can be a real problem. It's a print as well as online magazine; you may be able to find some helpful information there, notwithstanding the fact that it's directed toward "chemo taste."
What were your mother's favorite foods at home, and before she developed Alzheimer's? Could you try those? We also found that thicker fruit juices such as apricot and pear juice helped when taste was an issue.
Has she had anything like Boost or Ensure?
Perhaps something as simple as your presence during mealtime might encourage her to eat. She's probably in a world of isolation, unable to communicate and feeling a lot of emotion and perhaps fear. Maybe just being there when she has food will comfort her.
If I were in your place, I think I'd do as much research as I could about loss of appetite, try different foods and then make the decision on the feeding tube if nothing works.
I would also get some music and pet therapy for her. Bring in a CD player, radio or something that you can easily set up for her so she doesn't have to fiddle with electronic selections.
"She has severe alzheimers but still pretty healthy". Alzheimer's is not healthy, nor is it normal aging. The body systems will begin to shut down one by one which will be hard for you to be a part of. Sometimes the most loving thing we can do is to let go. Do you really think your mother would want to live like this? I don't think many people would want to live when they are completely dependent on others for their care and survival. A couple of years ago in one of my mom's more lucid moments, understood what is happening to her, she asked me to help her end her life. Think your decisions through carefully and thoughtfully. Some caregivers have a very difficult time letting go, and have a very difficult time after the passing of their loved one. Your decisions will be yours, but they need to be what your Mom would want.
We spent 3 hours in the ER on Tuesday and she was dehydrated, so now I'm trying to get her to drink more water. I told a friend I feel like I'm trying to bail out the Titanic with a teaspoon. I agree with Gladimhere, think through your decisions carefully. We can only do what we can do. Our mom's bodies have their own timetable and I'm not sure we can affect that no matter what we try to do. It's just incredibly hard for us to go through. No doubt about that. No doubt at all.
It showed a medical professional working with women in varying stages of dementia. The tasks were always the same: remove a slice of luncheon meat from a package, remove 2 slices of bread from the packaged loaf, add mayonnaise and close the sandwich.
As the video showed women in the later stages of dementia, they did not know how to remove the bread, or the luncheon meat. They could look at the objects but really didn't know what to do with them.
Obviously it was very emotional to watch that section of the video but it was enlightening because it emphasized how much memory and cognition had been lost.
Perhaps that's what's happening to Sujean's mom - she doesn't remember how to eat?
I wondered if one other way of looking at it might help to clarify the choice for you: if your mother were given this feeding tube, is there any prospect of its helping her get better to the point where she wouldn't need it any more? If there is, it's worth trying. If she'd need it for all her remaining days, maybe it would be a burden for her.
Please let us know how she's getting on, best wishes.
Have you called in Hospice yet? We latched onto any small bite of food as an encouraging sign and it put us back into denial. My one regret is that we waited so long to call in hospice. Their purpose is to make your mother as comfortable as possible and to give you emotional support. They will send in nurses and CNAs to give your mother extra attention to supplement the limited attention the NH staff can provide. Sometimes the extra attention causes an improvement and people do graduate out of hospice. If not, at least they are as comfortable as possible to the end.
My heart goes out to you. It is a terrible disease and it is so hard to see a loved one go through it.
I nurture patients back to life simply feeding them the best -- fresh organic food!