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.
Needless to say, by then he was extremely weak. His oncologist gave him "marching orders" to quit smoking, and drinking and to gain weight so he would have the strength to go through treatment. Dad took all that in stride and was determined to get well. He was transferred to a beautiful rehabilitation facility where he could focus on his goals, and work with a physical therapist. Unfortunately his ability to swallow had been compromised, and he wasn't able to have anything but pureed food, and thickened beverages.
My father loved to eat, and this was nothing but a downhill battle. He "couldn't figure out how someone could screw up shrimp scampi like that!" He had been prescribed Remeron to stimulate his appetite. It wasn't effective. In fact after his death when I was looking at the bottle, I'm not sure how something like that would stimulate anyones appetite. It had strict instructions for handling the medication, that made it sound like pure poison!
Two and a half months later we were informed that the tumor had grown, and because my father wasn't able to gain the strength for treatment he was asked how he wanted to spend the remainder of his life. Dad wanted to go home. When my parents were out of ear shot I asked his oncologist about medical marijuana, for the pain he was experiencing. He looked somewhat surprised, then he smiled and ordered a prescription. Talk about the appetite that may have saved his life! After his pureed breakfast the next day he was asking for dessert! We'd been told he probably had a few months left, and all I wanted was to get him home so he could have his cigarettes, and a Jack Daniels even though he hadn't said anything about missing that stuff. I thought he deserved it. A few days later I called to check in with him, and something was terribly wrong. When I arrived within the hour I was told he was actively dying. I signed a DNR and got busy, making arrangements with hospice, and a CNA to get things set up at my parents home. My mother was a wreck, with all of this happening so quickly. I sat with my dad that entire day, waiting for an ambulance to transport him home. We finally got home that evening where he would pass away in his great room facing Lookout Mountain in Golden, Colorado. He departed this life early the next morning. He was only 72.
Although my father didn't live a particularly healthy lifestyle, he was still young enough, and he wanted to be around awhile longer. This experience has taught me many things. However, one thing is certain, we have to stay on top of our parents care, medications, and the various physicians. We can't take everything the experts tell us as the absolute truth. There are so many "specialists" instead of one doctor, on any given case. They frequently don't communicate, or read notes written by or for each other. The information available on the internet is indispensable, helping us know what questions to ask, and to read between the lines of medical jargon. I hadn't even thought about Marinol as an appetite stimulant at the time. I was concerned about my dad's pain. What they'd prescribed caused him to hallucinate! For instance he informed us to make sure we got "mustard on the ants" while we were making sandwiches one day! My dad didn't like feeling that way, and although we laughed until we cried, there really wasn't anything funny about it. As consumers of medical care we no longer have to be at the mercy of physicians being the ultimate word. The playing field is becoming more even, and being able to be informed, we get to participate instead of believing we don't know what we need, or what's best for ourselves and our elderly parents.
Good luck Sujean. These decisions are never easy, and asking about an alternative appetite stimulant certainly won't hurt anything. It's worth a try before going the route of a feeling tube.
There is also a technique called hypodermoclysis where fluid is just given subcutaneously in boluses. There are times that people get themselves dehydrated and then feel bad and then because they feel bad won't drink; you will also find most hospice literature indicated right at the end being a little dry reduces secretions problems and should be accepted. But if you are not at that very end, being dehydrated can make you headachy and nauseous and probably should be treated. And if you are needing to fight off an infection of heal a pressure sore, decent nutrition is pretty important.
Its not so much help to give an answer here to this kind of question, but to give ways of thinking about all the options and how to formulate your own answer, which is best done mainly with both love and care, and maybe a little more knowledge and experience if you can find it :-)
In order to pick alternate agents for my husband's POAs I held a family meeting of my 2 sons and his 3 daughters. One of the things I handed out was his healthcare directive. I talked a bit about things he had said over the 30 years I knew him. And I said, don't become his healthcare POA if any of this disturbs you and you are afraid that you couldn't carry out his wishes. None of them ever had to carry out POA duties (I was able to do that right to the end) but I think the healthcare POA would have carried out my husband's wishes.
I think you did the right thing, too (for you in your situation).
Best wishes to you as you heal from the trauma of her passing.
Tough call in your mom's situation. I can tell you this: My mom is a very picky eater who hates the food at her facility and often wants only toast and jelly with milk, but also will eat a banana occasionally and loves Ensure or Boost. She calls the latter two products a "milkshake in a can". If you can find something nutritious your mom loves too much to refuse, perhaps your mom's facility would provide it?