No desire to eat issues

Hello, again. Brand new to this forum. My name is Wendy. My sister suffered a ruptured brain aneurysm in Feb. of this year. She has been doing great in the hospital so they released her. Well, she has not been eating at her care facility. She thinks they are poisoning the food. Or she sees bugs in the food. All this makes it hard to get her to eat. She has had to go back into the ICU because she was only 95 pounds and very dehydrated. Has anyone had this happen to them or someone they know? Is it common? We are trying to figure out how to help her. ANY insight would be so appreciated.
Thank you,

I know this may not be a long term solution, but have you tried bringing food in to see how she responds to that? Might be helpful to see if it’s their food or all food.

Also, my mother was in assisted living some years ago with dementia. She complained constantly about the food, including supposedly being served wet soggy bread. If I tried the food first, sometimes i could get her to eat. But in the end, we found out one of her medications was suppressing her appetite. Once that was changed she ate again.

Sorry, none of this is tailored exactly to what your sister is experiencing.

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Hi Judi,
Thank you so much for your input! Every bit of information helps. :slight_smile: We are starting to bring in some food for her, along with the hospital food. She seems to do better when people eat with her.
We know this is a long haul to get her better. I’m just grateful to have found a support group online. :slight_smile:

Hi, hats off to yas helping her, she will appreciate it more and more as brain reverts back to better days. Was she on a feeding tube like me -(10 weeks, 6 day coma)? The transition to regular food is tough but that is normal now. In the rehab I thought i wanted a Whopper sandwich and shake so my sister brought me one. However it made me sick! They said I was lactose intolerant but I think they were just guessing? I eat dairy or anything now! Hang in there, Bless your heart dear Sister, thank you for sharing your sweet story! tc


Hey Ronk,
She was on a feeding tube for about 1 1/2 weeks, post coiling surgery for the ruptured aneurysm. She was eating pretty good in the hospital, rehab floor. It was after she was released to a care facility. And they did NOT take good care of her. She got a UTI, became dehydrated and so she, of course, did not want to eat. I am VERY grateful for your telling me about your journey with food, though, because I think her ability to like certain foods could be part of the issue, for sure! Can I ask … when you were discharged from the hospital…were you able to find a good place for the next step?? We are having SUCH a hard time finding someone who will take her. She needs a one on one right now. That seems to be a huge reason for not being taken to like a LTACH place.
SO happy that you are on the upswing!! Bless you, as well.

Also, Ronk…did you have memory issues, agitation, hallucinations, that kind of stuff?? And if so…where/how did you get help?

@winman somehow I think this got lost, maybe not. I hope @ronk gets back to you, Ron is great with sharing his experience and his rupture was really bad, not that any are good, but I think his scores were worse than most.

When I ruptured, I refused to eat in NSICU and they called BH to let the family know they were going to put me on a feeding tube. Well BH insisted they give me the phone and the wonderful RN complied. BH said if I didn’t eat, the feeding tube would go in, so against my habit of not wanting to eat when I don’t feel good. I did start to eat, not much but enough to not have a tube. I remember I just wanted a shower, especially by week three and though the Neurosurgeon ordered it, the CNA told her that they didn’t have a shower. I said of course they do, it’s right across the hall when you walk in the unit. So another lovely RN, Flora, gave me a bath in bed and washed my hair. I cannot express how much better I felt being clean. And she bought me some Japanese take out! It did get my appetite going, not much. To the chagrin of Kenna, another wonderful RN who got assigned to me every day, I stuck with salmon and baked potato and veggie for dinner, humus for lunch and a bagel with cream cheese for breakfast. I didn’t care for their eggs much​:joy:. Poor Kenna tried to get me to order other things but I refused. I always ate better when someone ate with me. BH would sometimes order meals and sometimes bring in take out. The dietician ordered me some ice cream with protein in it and I could have six a day, I usually ate four or five and would offer the others to any patient who wouldn’t eat. I really liked that ice cream :joy:

I would get agitated if the lights were too bright or there were too many sounds, it would overload my brain to the point to didn’t want to function. I had no ability to process thoughts and just kept saying my brain was black. One of the Heather’s or Tiffany’s taught me about Pandora and every time I woke up, the same song was playing. That song, “The soldier and the oak” gave me strength beyond comparison. When they put me on dexamethasone IV, I had a horrible hallucination. So bad that Dr. Walker and EB came running in and before you know it two of the Musketeers (Residents) came running in. One of them wanted to process the extremely bad hallucination and the other absolutely did not. I wish they had allowed me to, I think it would’ve been better in the long run as I still can get upset when I think about it.

Memory issues are quite common with a rupture as can be hallucinations and agitation. I was an avid reader before I ruptured. My best friend brought in an easy to read mystery book and I had to ask anyone who went by my room what a word meant. They never blinked an eye and told me the word. A wonderful med student, EB, showed me how to use my phone to access a dictionary but I often forgot.

The way I explain a rupture is through driving. Say you drive the same way to work everyday. All of a sudden with no warning, you’re rerouted to unfamiliar roads because the road is out and you need to relearn a new way of travel. Our neurotransmitters are like roads in our brains, they tell the brain what we are seeing, hearing, experiencing, etc. when we rupture, those pathways are broken and the brain needs to build new ones. Merl with @ModSupport often explains the healing as it not being a broken leg or arm, and instead of six months and the cast is off, healing can take years. Dr. Sperry down in Texas has been doing a decades long research that I learned about right before I ruptured on head trauma. He has been following children. When I was in university, I was taught that any damage to a brain after age five was permanent. His ongoing study has proven that the brain can continue to heal and I even used that with my Neurosurgeon when she said my brain had healed as much as it was going to. He was correct and my brain continues to heal almost ten years out.

I would suggest looking at whatever medication she is on, some may be causing some of her issues. I know music was a great help in my healing and there’s an abundance of studies that prove this as well as exercise. She should be receiving some type of PT in the facility she’s at now among other needs. I know when my Dad went into convalescent care, he always complained about the food being cold. I took it up with the Social Worker and the facility dietician. I threatened to bring in my thermopen, an instant read thermometer that is extremely accurate. The dietician and I discovered the issue when he hit the elevator button. The person with the food cart was talking and joking around with someone, we could hear him. 15 minutes later the elevator finally came down with the food. The entire cart for that unit was taken back to the kitchen and new trays were brought down. At another facility Mom was at, she wouldn’t eat because she didn’t like the food. It was mostly over cooked and fried. We started bringing her in food from home, that she would eat.

If you know a Social Worker in the county she’s at, or your county if it’s different, you may want to ask them what facility they recommend. I know as a CPS SW, I worked with the APS folks and they told me the two best in our county. It’s based on the number of reports they receive. The one my Dad went to was the worse and when the best had an opening, he refused to be transferred. It meant I had to stay on top of them every day and visit every shift at different hours so they didn’t know when to expect me. It upset them to no end😂.

If her private pay insurance expires, she will need to go to Medicare/Medicaid. Her Health Care Power of Attorney should be looking into that and speaking with the Social Worker at the facility she’s at now. Make sure someone in the family goes to the weekly meetings, they aren’t long, no longer than 15 minutes, so any issues and questions you have need to be written down as not to be forgotten and have them addressed by the team. Once on Medicare, you will have to learn all their rules. UTI’s can be common, decubitus ulcers are unacceptable and need to be reported to the Ombudsman immediately. The facility Mom was at was one of our better ones. She wanted to be home for Mother’s Day and the facility was refusing to release her. The wonderful Night Charge RN might have left Mom’s chart open on the med cart and I may have perused it seeing that the facility doctor had not entered in her chart the first entry that says when Mom would be released which is a huge “no-no”. She also fell in the bathroom and laid on the floor for a couple of hours until a visitor heard her crying out for help. When I went up to the front desk, I requested a pen and piece of paper. The secretary asked what for and I said I was writing down the Ombudsman’s number as this all needed to be reported. We never had the first family meeting and despite repeated requests, the SW never told us when the team met. Mom was released that day. Apparently Medicare would pay the full cost for 21 days and then the patient has to start paying their share, so facilities like keeping people the full time. As for one on one in a Long term care facility I haven’t heard of one, doesn’t mean they don’t exist though.

Whoever has the Health Care POA should talk to the Neurosurgeon and find out what should be happening with your sister and when her follow up images and possibly an angiogram will happen. If she is married, it will fall on her husband most likely. I don’t know Idaho laws on that, it will be in their General Statutes. If she isn’t married and has no children, it may fall on to parents or siblings and a lawyer can explain that as well as draw up the paperwork. If she is unable to make decisions someone will need to get temporary guardianship.

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hi Wendy, yes after coma went to Bryn Mawr rehab, one of the best in USA. Had memory issues, agitation, anger but was usually provoked by nephews sever dysfunctions. Most things come back slow ie appetite, calmness, wisdom etc. Its npt easy transition, be patient , i know that must be difficult for all involved, hang in there, things will improve, tc Thanks Moltraub for the heads up! My e mail was hacked! OK now i think. take care, always love!


You’re the best Ron! Big hugs!

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Thank you SOOO much for all of the insights!!! I have been really busy with my sister and work, and life…so it’s taken me awhile for me to get back to the support group.
I am beside myself with the health care system in Utah.
All the things you have said have helped so much!! I really can’t express how much this means to my family and myself.


Hey Ron,
I’m glad to know that these things are normal. It’s hard when the doctors tell us that she is just the way she is going to be. But she is only 3 months out and has had a horrible time with getting good care. So, we keep the fight going!
Bless you


awww ty, {{{hugs}}}back wonderful warrior! I’m supervising Nephew chopping down dead trees! One crashed on tennents car w 5k damage! Be careful of dead trees, i was negligent and now sorry!tc

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Not exactly that and while I was in ICU. They kept giving me a sandwich. Not sure what it was but it smelled like insect killer spray. After the nurse finally figured out I wasn’t going to eat it she took it away. The next day at lunch there it was again. Same smell and I didn’t even stop and think for a second before I told the nurse they brought me back the same sandwich they brought me yesterday. That poor nurse probably tried to pay somebody else to bring me my lunch. Every day for dinner and lunch I ate cottage cheese and seasonal fruit. They sent in a nutritionist in every day to try to get me to eat something else but I only wanted the cottage cheese and seasonal fruit. It is strange how the mind can get so set on something. But I’m sticking to my story, that sandwich smelled like it had been sprayed with Raid.

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I bet! We had the Forest Rangers come out and look at some of ours, carpenter ants are a clear sign something is wrong with the tree. We had one that he said may live another 5-10 years, a nice beech. It was too close to the shop building and decided to take it down. We didn’t know any tree cutters here and went with the one our handyman suggested. They did a fair job of removing and trimming some but it was a hefty price and I’ll see if the ones we know will come out the next time.

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Isn’t it strange! But I’m glad to read I’m not the only one who became fixated on certain foods😂

oh good you are aware, yes hefty prices, we saved 1400 by watchin You Tubes! tc

It’s been a struggle. My sister is allergic to a lot of what they serve in the assisted living place. So they don’t give her a lot to eat. She can’t afford to lose weight. She isn’t getting any proteins or healthy fats. It’s good to know that eating issues are normal, though. She tends to see spiders or bugs in her food. Not all the time but…
Thank you so much for sharing your story!!
Wendy I.

I wish I had an answer for you on this. I took care of my grandmotherfor 7 years before she passed away. My grandfather passed away and she was in the early stages but quickly went to the late stages of Alzheimer’s/Dementia. The last 4 years were in and out of assisted living, hospitals and nursing homes. At first I would cook meals she liked and take them in but she caught on to that and I couldn’t get her to do anything except drink coffee and I would catch her sneaking an occasional cookie or donut. I tried taking her out to eat and she wouldn’t eat because she was too scared I didn’t know where I was. She got down to about 80 pounds and they tried to talk me into putting in a feeding port. I scheduled to have it put in when the nurse at the hospital asked me if I knew only special facilities could take a patient with a feeding port and the nearest to where we lived was 200 miles away. Panic set in while I sat in her room and on the phone calling everybody I could think of to make sure nobody tried to put that feeding port in. It’s so sad when they get past the point of knowing who you are and being able to trust you. I wish you the very best of luck. If you need anything, even just to vent, I am just a holler away.

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I think they want to treat her like an Alzheimer patient but she is a ruptured aneurysm patient. I think that’s part of the issue. She needs different care for
her specific issue. But finding ANYTHING is nearly impossible.
Thank you for your support! Mean so much

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@winman the dietician or whomever is over the kitchen should be able to handle developing a diet for her, that’s their job. The doctor would need to prescribe supplements I do believe. Perhaps giving the dietician a list of the things she can eat will help them if you haven’t done that already. At the very least, they should be offering her some Ensure or whatever they use, if the doctor has ordered it which should be done during the tea and family meeting. They must follow this and their State rules on dietary guidelines 42 CFR § 483.60 - Food and nutrition services. | Electronic Code of Federal Regulations (e-CFR) | US Law | LII / Legal Information Institute

Since aneurysms are rare, there is probably no facility that has a wing or floor for us. We are usually put in the stroke ward or if there’s a ward for TBI’s we sometimes get there. When Granny was put on the Alzheimer’s floor, they put an ankle bracelet on her so they could find her if she wandered off. They also kept the door to that wing locked and the RN station was about 20-30’ from the door and always manned. If the facility had a fire or other emergency, the door lock wouldn’t function so everyone could get out. Just like most hospitals, even the ICU I stayed at the visitors had to be buzzed in and out. Staff got out with their ID.