Says she’s not being fed in assisted living

kbeem3

Hello, my mom has dementia and is in assisted living.  She constantly is worried and says she isn’t being fed but we for sure know differently.  Anyone ever had the experience of a loved one worrying about her meals?

terei

It really does not matter what their fixations are: food, going home, driving, etc etc etc etc. It is all the same.    If your mother is expected to attend meals on her own, is she doing that or should she have an escort to make sure she is going? 

If she is not losing weight, she is eating enough.  AL generally keeps track of who is at which meals + you can get that information.   If you are assured by staff that she is attending meals, I would tell her if she complains of not being fed:  ‘ oh, my goodness!  I will look into that immediately!’.    If she is NOT attending meals on her own, she should be escorted, which may mean additional fees

kbeem3

Due to the pandemic, she is only eating with residents every third day.  I am told that she does receive three meals.  I just don’t understand why she is fixated on saying she has no food.  I take her snacks to have on hand and she can call for snacks.  She spends most of her day worrying about food.  She is not losing weight but always complains of a stomach ache, probably from her constant worry about not having enough food.  The workers tell me they re-assure her regularly.  Just very sad for me that she is worrying and so scared about this every day.  She does also fixate on other things such as her old car and driving, going to the store, etc.  The food thing is a big one tho.  

Jane Smith

Hello, kbeem.  I see you’ve joined recently. If nobody has said, welcome, and I am sorry tuned to be here. 

Oh, yes, my mother also used to tell me this, when she was in AL. According to her she was locked in her room, never saw anyone, did not get her meals, did not get her medications, nobody ever talked to her, there was nothing to do, and she spent all her time alone in her room. She moved to AL shortly after her diagnosis of dementia, and I was still new to the whole dementia thing, and I had not yet really grasped that she could not always accurately self-report, and sometimes she could, so it was very confusing for me at first. 

Of course I did what you have probably done, talked to the staff. I mean, I knew that they were not starving her, locking her in her room, or withholding medication, of course, but did not know what was accurate. Much to my shock I learned that she was rarely in her room except to sleep, and happily participated in literally every single activity. I was in such disbelief that the staff arranged me for to come in and visit and observe her from where she couldn’t see me. Sure enough, trivia, arts and crafts, bingo, you name it, she did it!  (Until she noticed me, and then she’d coerce me to her room “for a chat,” but that’s a whole other story and I don’t want to bore you.)

My mother also definitely had a fixation on food and meals. So does my other relative with early stage dementia. I don’t know why, but it seems to be a thing. 

Something that helped my mother was adjusting to the routine and support in AL, which happened more quickly than we expected.  Another was making a friend in AL, so she always had companionship (and that was pure luck or divine intervention, nothing we could have planned).   But the most important thing was getting her medications straightened out and getting her anxiety under control. Her fixations and obsessions were greatly reduced, once her anxiety was reduced. That took time and a good doctor. 

Specifically about the food, my mom was allowed to have snacks in her room, and once we figured out what snacks she liked best, and what her necessary stockpile amount was, that also helped with the anxiety.  If she had the right number of boxes of Kleenex, rolls of toilet paper, and boxes and bags of snacks, she was much happier.

It is sad to think about our loved ones/family/friends/persons with dementia, worrying and being upset. Everything about dementia is heartbreaking and difficult. But it’s possible that like my mother, yours is not suffering that much all the time. Until she settled in and we got the meds correct, unfortunately spending time with me, or talking to me on the phone, was a trigger for her anxiety and distress.

I hope you’re able to find something that helps. Best wishes. 

BassetHoundAnn

This sounds a lot like my mom. She often insists that no one gives her any food, even though she's given three meals a day. I check on that. She often throws the food out. I find it in her garbage. I bring her snacks but she throws those out too. She's taken down to the common area to eat with others several times a week, but often doesn't want to go. When she does she doesn't remember it. Food is one of her fixations. Along with "I need to go to the bank," "I need to buy a car," and "I need to find a roommate." 

Like your mom she often complains she has a stomach ache. I'm not sure what that's about. I've mentioned it to her doctors several times but no one seems to think it worthy of investigation. 

I do think her body's appetite mechanism is shutting down and that's due to Alzheimer's. 

I visit her nearly every day and sit her down and get her to eat and drink stuff. Ice-cream is good. Others in this forum have attested to the ease of getting appetite-challenged parents to eat ice-cream. Finger-foods like berries are also good. 

Gina Chapman

New here

I care for my grandmother, she is 94 and lives with me. Her current obsession is wanting to call her mother. You can figure out that her mother is no longer with us by seeing her age. She won’t stop asking for a phone book to find someone to call. Everyone she asks to call has passed away. This is heartbreaking and I’ve tried multiple approaches to help. Ignoring her requests or placating her isn’t helping. Telling her these people have long since passed in isn’t helping. Reasoning to her to deduce its impossible for her mother to be alive isn’t working.  I suggested she write a letter and that didn’t work either. I finally convinced her to go to bed and read her book. I’m tired y’all. I hope tomorrow is better.

kbeem3

Thank you very much for your response!  It feels good to hear others sharing similar situations. Your first paragraph is exactly my Mom!  She says all those things and it makes me feel so bad.  Then I see the monthly newsletter and my mom always is happily participating.  She reports the opposition of everything!  She says this is all new to her but it’s been 8 months.  .Dementia is very very Sad!

kbeem3

Hello and thank you so much for your response.  I bet you are right about her body’s appetite mechanist shutting down.  I’ve heard a little bit about that.

harshedbuzz

kbeem-

If the AL isn't specific to residents with dementia, it may be time for her to move to dementia-informed care. 

My aunt with dementia was placed into a regular setting because her caregiving daughter had done a lot of scaffolding a prompting giving the impression her mom was more capable that she was. My cousin is also deaf, so she may not have been as aware of her mom's decline in some ways and certainly had difficulty communicating the degree of behavior she was seeing. It did not go well. Her mom didn't turn up for meals unless a family member or personal aide could convince her to go. She claimed the other ladies were unwelcoming to her and they probably did shun her to some degree.

That said, my dad sometimes claimed he didn't eat even after we'd brought him lunch and watched it eaten. In his MCF, snacks were offered. There was no expectation that residents would routine ask for food if they wanted something so snacks were offered 3 times a day.

If her anxiety is new or increased, getting a geripsych consult would be useful. Dad's MCF had one who came once or twice a week who was awesome.

HB

King Boo

QUOTE:  "her caregiving daughter had done a lot of scaffolding a prompting giving the impression her mom was more capable that she was"

HB, best phrasing of this phenomena I have ever read!

OP-If you are sure you know otherwise, it is a common part of the disease, as others have eloquently told you.

CAVEAT-at many AL facilities, patients are expected to be high functioning enough to come to meals themselves and feed themselves.   Once this skillset goes, it may not be picked up upon quickly enough.  It's often not really monitered at a basic AL.  

Memory Cares usually will monitor meal attendance and amount eaten - it can even be part of their care plan to record what is eaten if needed.  

It's not always the dementia.  During a hospitalization, my LO insisted he had not been fed while waiting in the ER overnight for a bed.   Nurses blew this off as impossible - I insisted they check the records and lo and behold, no one had brought him anything since being admitted to the ER.

Go for data for peace of mind.  

kbeem3

Thank you so much for those tips!  I am going to look into the psychologist one.

harshedbuzz

kbeem3 wrote:

Thank you so much for those tips!  I am going to look into the psychologist one.

You want a psychiatrist who can prescribe medication if indicated. 

Most PWD are past the point where they can recall, recognize or implement strategies like cognitive behavior therapy or benefit from other kinds of talk therapy.

Good luck.

Sergey

I know a lot of people responded. I just wanted to reassure. For us unfortunately it is a new norm. My grandma forgets right away that she just ate. Literally, as soon as she is done eating and my help cleans her plates off the table she asks her when will she serve dinner. I also know my friends who also have old people with dementia experience the same. And her doctor said that this is a new norm.

One more thing. You mentioned that she has stomachaches. Unfortunately per my grandma's doctor and what I hear repeatedly from people who have loved ones with dementia: in very old age if something hurts then you are still alive.

Last thing, somebody mentioned psychiatrist, I would be careful with that. They prescribe very powerful drugs that can make her a vegetable. My grandma has neurologist instead. It doesn't improve her condition but theoretically slows down progress of dementia.

Rescue mom

Yes, I also think it’s a common problem, and like many things dementia patients fixate on, no explaining why.

My mom used to say that about her AL facility, they actually took video of her eating and showed me, when she said they didn’t feed her....and as said, I sometimes actually saw her eat, then she denied eating (among other things).

Good, valid points about the possible need for more  intensive/MC care.

harshedbuzz

Sergey wrote:

Last thing, somebody mentioned psychiatrist, I would be careful with that.

I found my dad's psychiatrist to be more of an expert around medications than either of the neurologist we saw. Psychiatrist are the specialists around psychoactive medications. 

They prescribe very powerful drugs that can make her a vegetable.

I am sorry if you had that experience with your LO. Dad's geripsych prescribed him a "cocktail" of medications which allowed him to be on a lower dose of the more powerful antipsychotic avoiding sedation and other intolerable side effects. 

My grandma has neurologist instead. It doesn't improve her condition but theoretically slows down progress of dementia.

Dad had both; the neurologist oversaw his dementia care and the psychiatrist addressed his anxiety and the behaviors it caused. While there are medications for dementia that are able to improve symptoms (which is huge for those it helps) for a percentage of those with Alzheimer's none of them slow the progression of the disease or extend life expectancy. 

kbeem3

Thank you so much for your reply!  I think it is the new norm for my Mom.  She forgets right after eating too!  It makes me so very sad!!  

Sincerely,

Emily 123

Oh yes!

Doesn't remember eating = Didn't eat = No one's feeding her.

Showered every day, so must have showered today too.

'Bored', 'nothing to do', but frequently on the facility Facebook page doing activities (most recently with a dog from the SPCA draped over her lap).

Thank goodness for the photographic evidence, or I would be feeling guilty.  

Hang in there!

Klgm326

Hi all!

My mom is 95. She has been in AL for about 18 months. Last month, she had an episode one morning and we feared a stroke. Apparently her dementia just accelerated and her confusion increased x3 at least. I moved her to a different home with memory care that I’ve only heard positive comments about. She has been there two weeks and I am constantly feeling I made a bad decision. She is now in a wheelchair after her hospital stay (she’s been struggling with her knees but being in the bed for 5 days seemed to weaken them tremendously). She’s also incontinent, so with the new wheelchair status, she requires help. She has been obsessive for a while but it’s multiplied—the schedule is wrong, the food is cold and unedible, nobody comes to check in on her, etc are the daily rundowns she gives me. With Covid restrictions, I can only visit once a week but we videochat daily. She did see the psychiatrist who put her on Zoloft, so I’m hopeful it will help. My worry is maybe I should look for a different place. She’s never been unable to adapt before. What if she really doesn’t feel good in this environment? Ughhh...Glad to have found this group..,thanks for listening.

srrpnw

This has started happening with my Mom.  She just plain forgets she has eaten.  Her AL has started leaving her notes such as "You ate breakfast at 8:30 and had eggs and bacon".  She is still a reader and these notes seem to be helping.

She is at an AL that is geared toward keeping people in place as long as possible, and so have all sorts of tricks for dealing with dementia.  I know other places don't have that model and expect more independence from their resident.  They also have an excellent memory care section.  We are considering that at some point that might be better for her, as right now she tends to isolate herself in her apartment.  We are playing it by ear.