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My mom has dementia. I am her caregiver. She has lived with me for over a year. Today, out of the blue at her doctor appointment she made me leave the room then told the doctor I withhold food from her. I have never skipped a meal for her. She has been in good health this whole year. I was questioned by her doctor about this. I told him this is not true. He said he can tell she is eating because she is healthy. Now he is obligated to send someone out to question me. I am very upset by all this. Mom doesn't remember saying anything to her doctor nor does she remember asking me to leave room so she could talk. This came out of left field. We always get along. There has been nothing but love and understanding and excellent care given to her. I know it's her dementia and I dont fault her for this. It just is a horrible and sad experience both she and I went through today. Any words of support are welcome. Thank you.

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Your mom has lost the ability to reason. Don't get yourself upset when she says strange things. Trying to convince her that she has eaten will be a futile effort. It is the disease. If she continues to complain about you, her Dr. will see the pattern. My mom (aggressively) tells me not to burn her whenever I turn the water on for her shower. I have never burned her, it's just something she says. I ignore it. Give your mom small portions, put each addition serving on a different plate, leave the plates in front of her. If she has set activities, plan her meals shortly before them so that there is a time limit.
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I have been following this trail of comments but don't see anyone mention about what to do about Mom, who is 87 and lives with me since Dad passed away last August, is foraging (I was calling it Grazing) on her own (to the refrigerator every 10 minutes in the afternoon when she is awake, and ALWAYS right after she wakes up from napping, which is all day long.) She doesn't ask for anything just keeps going back, even when I am in the middle of preparing dinner. I keep yogurts, fruit cups, Ensure drinks etc. there, and she keeps making Jam sandwiches. She gets defensive when I remind her what she just ate for lunch. Her non refrigerated "go to" is cereal. Several times a day if I let her.

How do you deal with this when they are mobile on their own? I feel awful trying to stop her from another serving of whatever. "But I want it!" She just dumped the rotissierrie chicken on the floor rumaging in the fridge. I keep the toaster under the counter, unplug the microwave, (she burned bread in it a few weeks ago), and took the knobs off the stove.

I know it's the disease, but it makes me just about quiver with frustration. She was doing this before, but dealing with it on an hourly basis is awful. I Suppose it could be a lot worse, and probably will be. I keep a regular journal, and started to do a food journal for the particularly bad days. Will run it by her Doctor this week.

Any other helpful hints?
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polarbear Feb 2020
bixbro1 - you should create a new thread and ask your question. That way other people will see and reply to your specific situation. Otherwise, your post will be lost among other posts.
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Ask doctor to evaluate her for palliative care/hospice care. After this, he should be able to have her evaluated.. This means that a nurse will come to your home and take vital signs etc.
With Hospice, they checked her "weight" by the diameter of her upper arms, above the elbow. This is an indication if fat is building up, or going down.. as far as I recall.
If you take pictures, take selfies with her holding a milkshake or something with you, make it a fun and happy picture so she doesn't get upset about it. Play music,,.. You can always mix her ensure with a milkshake to make it taste better. That is what my friend and I did with our moms when they were roommates at a board n care. We made it fun, lively and happy..:)
Is she able to participate part time at an adult day care a couple days a week? Insurance may help pay for it.. I don't recall. I don't think they did with my mom, but that was a number of years ago... Senior activities during the weekday, to give you a break, and mom something new to do to activate the brain differently.. New people, activities, daily news, where in the World are we Talking about..Geography... puzzles,etc... you get it... IF YOU CAN ENGAGE HER IN OUTSIDE ACTIVITIES A FEW DAYS A WEEK, WILL HELP TOO.
So when she comes home to you, she will be happy to see you...and she knows you are doing the best you can... Sometimes, all of us need a break.. :)
Glad she is around for you to get concerned... :)
Glad is able to talk, and make conversations... When that stops,,, IT IS REALLY SAD...:(
On that note, please be patient with mom, do not correct her if she doesn't get a name right, or a date right, or what she had for breakfast... When she stops talking, that will be very devastating. I asked mom what was my name, .. her sister's name popped up... I corrected her.. she stopped talking... It hurts... then you are the master of facial expressions, you think... happy? yes... frustrated/confused? looks like it....crying...it hurts, or she is sad......or scared...
I am glad your mom is well taken care of... you are doing a good job! Keep it up. You are all she has, make it fun, enjoyable and happy... You Both Deserve It!
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Take a cell phone photo. A picture is worth 1000 words.
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cherokeegrrl54 Jan 2020
Yes and they’re also time/date stamped!!
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Because an agency may get involved start documenting when and what your mother eats. To be on the safe side I would keep notes about her daily activities. You never know what she might say if there’s a home visit and you never know what information might be asked of you. Take note of visits by family and friends.
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NHLGAL77 Jan 2020
I did this too ... we just kept a general journal about EVERYTHING going on with my mom - meals, when changed, when her linens were changed, what meds were given and when. It's great for continuity of care between caregivers and also a good defense against unfounded accusations.
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I think another thing worth mentioning - and one of the determinants that hospice is appropriate - is when they are eating fine but not gaining, and perhaps even losing, weight. It's called 'failure to thrive'. As they near death (in the approaching year or so) their bodies no longer utilize nutrients as designed. They eat but the nutrients exit their bodies without being utilized as they would in a younger person, making your stronger, healthier, more energetic etc. It could be why they feel they are not eating at all, or enough. Looking back I remember my mom saying she didn't think she was eating enough because her weight was dropping. We didn't know it at the time but she was in her last year of life and her physician told us of this 'failure to thrive' shortly thereafter.

As I said it's also one of the things medical professionals look for when deciding whether and when hospice is appropriate.
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Give her more food. When I visit my mom in her facility I always serve a small meal regardless of how soon after lunch or before dinner it is. Usually we share low fat cheese sticks with crackers, fresh fruit or canned fruit in 100% fruit juice, and milk or low fat Starbucks coffee drinks in bottles. I usually buy packages of fresh fruit already cut in chunks and small snack packs of fruit. Since the cheese sticks are individually wrapped they last longer in the fridge than sliced cheese. These foods are quick, easy to serve, and easy for her to eat. I’m conscious of controlling calories so that guides my choice of foods and the quantity I serve. If she lived with me I would feed her on demand. I definitely wouldn’t fight with her about food. Pick your battles.
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Propstmnk: You're very welcome.
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Well, for what it's worth just about this time a year ago a former disgruntled caregiver for my mom filed a complaint on me with Adult Protective Services. APS is obliged to investigate every claim no matter how outrageous, so I had the inconvenience of having to meet with the assigned case worker. Of course, she could tell right off that the complaint was baseless, but we had to go through the drill. Theoretically your mom could go around making complaints to everyone with at least some professionals obligated by law to pass on the complaint. Just know that these agencies deal with thousands of complaints that they know are ridiculous from the get-go and just keep giving your mom the great care you are giving! Sorry you have to go through this, but that's more of the fallout from dementia. Hang in there!
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Propstmnk10 Jan 2020
Thank you. Yes, I will continue to give her my loving care.
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I don't understand the obligation to send someone to visit with you if your Dr. Knows she has dementia. Just remember your doing your best. My father claims he is hungry and hasn't been fed but he ends up throwing most of his food away saying its awful or no longer hungry. I hate this disease. Hang in there.
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We weigh my aunt (93 dementia) weekly. She doesn’t have CHF or other water retention that could distort her weight so it makes me feel pretty confident that she is eating enough.

Her blood work shows she is not dehydrated and all numbers are good.
A daily log is kept of her BP, O2 and Pulse readings. Various other things are checked off that are being tracked.

On the opposite side of your mom is my late MIL, also with dementia. When visiting we would ask if she had eaten and she would say she had and then would describe a huge meal that usually began with fried chicken. FIL ( also with dementia) would listen in wonder and then complain that he wasn’t invited to that meal. He had eaten only cereal he would grumble.
Of course, she had not eaten the meal she described. (Nor was he living on cereal).

My mom used to complain that when my nieces and nephews as young children would arrive at her kitchen table, they would say they hadn’t eaten. My mom would frown at my sister. It would make my sister so upset with them. They had just finished eating at home but when they got close to GM they got hungry for whatever she was cooking. Everything tasted wonderful there. I wonder what your mom’s doctor would do about that? Have CPS visit?
Doesn’t he know that your mom has dementia?
I’m sorry that the doctor is not allowed to depend on his own examination and tests to temper her remarks.
She might mention he was inappropriate with her when you stepped out of the room, what then?
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cherokeegrrl54 Jan 2020
Had to laugh on the grandkids always being hungry...I remember doing the same thing to my mom, saying to GMA that i was starving, when in reality we had just had lunch or supper. And my two children did the same to me with my in- laws. I always heard, dont you feed these kids?? They knew that my children were well fed and taken care of. I think its a GMA thing. Lol 😄 Brought back some good memories with my grandparents.
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When we were caring for my grandmother who had Alzheimer’s many years ago, she would eat dinner, walk down the hall to use the restroom and come back after washing her hands and say “what’s for dinner? I’m starving!” We’d tell her “Grandma, we just ate. see? We’re cleaning up the dishes.” She’s say “what did we eat?” And we’d tell her, and then she’d say “did I like it?” and we’d tell her “you sure did! you cleaned your plate. It’s almost time for “Wheel of Fortune”, so go watch that while we finish the kitchen and then we’ll have some dessert.” That always seemed to satisfy her. I think it was the distraction and the routine. 🤷🏼‍♀️
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Propstmnk10 Jan 2020
Hahaha, that sounds like a normal conversation and night at my house. EXACTLY. Breakfast , lunch , and dinner. Too funny. Thank you.
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It must be very upsetting. There you are, having taken your mom into your home to care for her yourself and now you're being subjected to unwarranted scrutiny.

Sadly, it's all part of dementia. Your mom is in brain failure. On the plus side, it will now be documented that your mom has a history of unfounded reports. That will be a good thing if this becomes habitual.
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I work as a service coordinator for in home care and train caregivers. Here is the advice I gave recently to one of our family caregivers who was facing your situation. His Dad claiming at the doctor's office that he wasn't fed. = Keep a dated and time noted journal with every meal , snack and beverage you serve. Also document exactly what foods your parent ate/ beverages, and approximately how much they consumed. Using measuring cups for servings will help. I would also recommend you have your parent sign every time you offer them food or beverage or when they eat/ drink. ( If they resist you can make it fun by making up a " menu" and let them pick what they want and sign it like a restaurant order. )You could even take photos of your parent eating, with your cell phone with a time stamp to add to your notes. Documentation covers you/ your loved one, and helps the doctor or dietitian know the diet of your parent and the memory loss/ or attention seeking behaviors presented. / I hope this helps! : )
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Propstmnk10 Jan 2020
Very great advise. I actually have been having mom write a food journal. She writes everything in it , food and beverages. This whole week we have done this she hasn't said she is hungry. I also have been taking pictures of every meal to remind her. Thank you very much for reinforcing my actions. Yay.
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The doctor saw that she was well nourished. Can you speak with the physician?
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Propstmnk10 Jan 2020
He and I spoke in his office. I called my sister who is witness of my moms dementia and the unending mantra " I haven't eaten , I'm starving" . She supported my innocence and let him know that mom is well cared for . She let him know that for 8 years mom has been through 4 family member caregivers. All of which, she claims never fed her. I began taking pictures of her meals again. I am now having mom work with me on journaling her meals. I also take records of her vitals and memory questions. Age , date , day, etc. Thank you for taking the time to help me with advise.
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All too common experience with people with dementia. If the doctor knew (a) she has dementia and (b) she was well nourished, it should not have escalated. Or, hopefully, if the doc felt obligated, they noted that the patient has dementia and it is not likely to be a founded claim.

My mother constantly claimed that I had not done things for her but, fortunately, not that. At her AL she claimed they did not remind her about meals or feed her but, thankfully, it was a great facility and they had good records.
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Take a video and ask her what day does the newspaper say it is-- and then what time it is. And then show her and take her into going to visit a neat hotel where they feed you snacks AND meals. ( do not tell her it is an assisted living)… BUT do tell her they have entertainment there, lotsa things to do... you can lie in the sun or watch movies... paint pictures, play cards, bingo ! She'll love it ! The main thing with all dementia related stuff- re-direction ! Steer you loved one to an new exciting subject and keep them from getting stuck like a scratched record on a record player. It is YOUR LIFE, too. Or you can be co-dependent, and enable your mother.
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Pity4mom Jan 2020
Dang!! That's goood!! I need to save this for when I've had enough of my accusive
Blaming Alzheimers mom
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Give her one small piece of fruit or cracker.
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My mom did the same thing, at first I would say "You did eat." But she would get so sad and say she was hungry. So she would get a scrambled egg from me and be very happy.
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Dear Props, my mother said the same thing for awhile. When's supper? Mom we just ate. No we didn't.. Yes we did.. well I don't remember.. So I would give her some crackers or a 1/2 banana, trail mix , a piece of bread, something to eat again, she would look at it take a bite and say I'm full, I said that's because we just ate! She was losing weight after her stroke and then being in ortho rehab on pureed foods she refused to eat. After 3 or 4 visits to her new Dr. we were referred to Hospice for protein malnourishment so I was always worried about being turned into APS. So I would get my phone out, and say the date and year and then record mom eating. Then when she said what's for supper after just eating I would pull it out again and say mom I didn't hear you, what'd you just ask me? When she remembered what she just asked me I would say well we just had supper but since you don't remember eating I will get you some more to eat ok.. I did that to cover my butt.. she would tell Hospice I didn't feed her, and I would show them the video. She said well there's the video of me eating so I guess I did eat but don't remember. so my suggestion to you is get your phone or camera out and record her every time she eats. Also my mom told the hospice nurse I wouldn't let her eat cookies, I said mom you had 9 cookies today you don't need more than that, she would snicker and tell them I do like cookies. so they knew she was eating them. I hope and pray you get a good social worker come out! Good luck
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All I can say is this is part of dementia. they tell stories and forget them five minutes later. the doctors are not stupid and the people that come out to check on the complaint are not stupid either.. they will see the love and time you put into mom and her care. they have to come out when there is a senior complaint. once they realize mom is ok and being treated well they wont be back. yes it is very upsetting but its part of the disease and doctors must report it.
my mom complained that I wouldn't let her sleep in a bed but I put her in the dogs cage at night. now as silly as it sounds her doctor had to report it. they came out and laughed, had cup of tea and wished me well with her caregiving.
I learned to take everything they say to me and anyone with a grain of salt. they will forget it faster than they said it....
good luck....
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disgustedtoo Jan 2020
I had to laugh at the dog cage too! I'm sure that went over great at the time she said this, but clearly whoever came to "investigate" saw through it and all was good!

You reminded me about what happened with my daughter at school. When I went in for the usual reviews, first thing teacher does is ask me how many kids I have... Ummm, 2 (thinking where is THIS going?) She then asked about their rooms. Each has their own bedroom. Then she tells me how the kids get a topic handed to them and have to stand up and talk about it. My daughter mentioned sleeping on the floor... Ahhh, the light dawns!

I assured the teacher we three ALL have our own rooms and beds. At her dad's, she was at that time sleeping on a futon, not the floor! Maybe to her it was more like the floor, compared to a regular bed.

By some good fortune, I dodged a bullet there, eh?
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Wow I can't believe the Doctor would even call anybody knowing your mom's condition. On occasion my Mom tells me that she didn't eat. I would tell her that she did. They will see that she is well taken care of. Get some help so that you don't feel alone. I am trying to do the same.
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Take photo of her eating...Show it to her when she says she hasn't eaten...Of course she could say it is a picture of a previous meal.

Grace + Peace,
Bob
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lakin1013 Jan 2020
My mom no longer recognizes herself in photos.
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I have been my MIL's care taker for 3yrs. She has demintia. She weight 260 and was on meds for diabetes when she came to stay with us.. Thank goodness we have the same dr. He has been through this with his MIL and his own mother. I have never left her alone with him. She does ask sometimes but he tells her that I need to be in the room. I am POA. She is healthy now down to 160. And no more diabetic meds. He knows I take very good care of her. We all understand that dealing with memory loss, they say and do things and don't have any memory of it.. My MIL is on Hospice now and tells her nurse that I am mean and treat her bad. The nurse will just wink and change the subject. I am also a mandated reporter but if the DR reported me every time my MIL complained... Lord have mercy. She would have been removed from us 3 yrs ago.. Keep your head up and just remember you are doing the best for her. It will work out. Best of luck.
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Hi, I feel for you. My mom can’t remember she ate 3 minutes after we leave the dining hall. Same with wine which unfortunately had to come to a stop- she loved her wine. Just know you’re an awesome daughter. Your mom would be proud if she was aware of what was going on. It’s a dreadful disease and hard to watch them struggle. Interestingly enough, as far gone as my mom is she still seems to have consciousness moments when she realizes she’s been asking me the same question for the past 5 hours. She wakes up for a brief second and then never asks the same question again. Maybe your mom might somehow remember this incident and not repeat it.
My best to you and your mom. You’re a kind soul.
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I would say if you have a phone document the times you feed her with video.Get a large Gigabyte SD card you store the videos so you have proof (transfer to an external drive) .Unfortunately their minds Don’t remember and they do have to take it serious when the allegations arise.sad to say no good deed goes unpunished you now have to protect yourself.
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My mom did this too. Made some unsupported claim and next thing you know we have a 'case file'. APS workers would make unscheduled visits. Unscheduled calls. My mom's complaints were untrue and the case was filed away. But what you gain is the knowledge that this person can say whatever they want and it has to be taken seriously. No matter the good job you may be doing, if Mom says you are beating her or starving her, it gets investigated. Just do the best you can or find her somewhere to live.
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Unfortunately this may be a requirement. I would rather have a doctor who follows through though... Another thread the OP said the doctor won't administer the cognitive test unless the patient asks for it - WTH? In one of the responses, another person said the doc indicated the person couldn't have dementia as nice people don't get this... YIKES!

It was disturbing to see one response say APS showed up with the police, but then again there are times when they don't get cooperation or worse (remember that man who blew up his house, presumably with his kids in it and killed the APS worker?)

It's probably best to just graciously invite them in and they can query your mother all they want - it should be apparent to them that this is dementia working. Given that she isn't emaciated and appears to be well cared for, that should be the end of it. If not, ask for a supervisor to discuss why follow up visits are needed for this instance (food being withheld) if mom is of good weight and appears healthy.

Caring for her myself isn't something I considered. I made my decision that I could not care for her myself for various reasons, including physical capability on my part. Any complaints would have to be directed to the facility! My mother is actually overweight, so they can't be accused of withholding food! They told me once that right after eating breakfast, she said she hadn't eaten and demanded more! They gave her more food. Any time she falls, they report it to me and either have her checked out/monitored for a while. Most of her "falls" have been gentle tumbles, no injury, so again, no need for APS!

I WAS concerned when she was living in her own condo and after a few months of 1 hour checks (sanity/meds taken), she refused to let them in. I was worried about something happening to her and WE kids get the blame for not being proactive. It took some time and wrangling (she refused to consider moving ANYWHERE, including to brothers' places) but she is now in MC. The move was delayed for several reasons beyond our control, but it couldn't have happened at a better time! She "bruised" her leg, didn't let us know (she did tell her neighbor, who relayed that to me) or have enough sense to know how serious it was (cellulitis.) If not caught when it was, it could have killed her!

Funny, my almost 21yo kitty, with CKD, lung spots, previously treated for hyperthyroid, has developed kitty dementia (feline cognitive disorder.) She eats MORE than any other cat in the house! She lost a lot of weight when being treated with medication for the thyroid and being older hasn't really gained any back. So, is she forgetting she just ate or are the lung spots taking too much from what she eats? Can't exactly ask her about that! I do know that before the dementia I had trouble getting her to eat enough, but now... nom nom nom all day long! So much that she poops twice/day! :-D
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This happened to my parents once, and when two men from APS services showed up and determined that everything was fine, they remarked that when they visit a home, they generally find the situation either to be much BETTER than expected, or much WORSE than expected, but rarely JUST as expected!
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When my widowed grandfather was living in our house during the winter, my mother, who worked several hours a day a few times a week, would provide a lunch for him and put it in the refrigerator. One day she forgot to leave a note telling him the food was in the refrigerator, so when she got home he gave her a "you let an old man starve" lecture, so then she realized he had to have a note left to tell him to get his food and eat. I suspect he was really capable of figuring it out, but just wanted to "be a victim" because he had a tendency, even when younger, of being demanding.
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