Does anyone have experience with a dementia patient who only wants to eat 300 calories a day and does not realize why this is not healthy?
My mother was recently diagnosed with mild mixed dementia (Alz & vascular).
Unfortunately, over the past month or so, she has started to strike breakfast and dinner and only wants to eat 2 pieces of low calorie bread and a few cheese wedges per day.
She has developed delusions that her breakfast oatmeal is making her vomit, in addition to her evening meals. The only thing that has been working is ordering takeout and supervising the consumption on a nightly basis. She won't allow us to cook in her kitchen, so it's either takeout or we bring meals. However, she won't eat anything that comes from the freezer anymore. Every day she finds a reason why something is wrong w/ a certain category of food.
If she doesn't eat enough calories, she can't take her multiple BP meds, so we are in a predicament. She is also refusing any outside help from a meal service or nurse, She lives with my brother, but he doesn't come home until 4PM daily. He is the one supervising dinner, but he's not always successful in getting her to eat.
Asides from sectioning her, we don't see any other way of breaking this cycle. Her PCP "doesn't see the need for an Rx of an appetite stimulant" which blows my mind. Psych wrote off her symptoms as "just the dementia", despite the fact we suspect depression and possible disordered eating.
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When I started caring for my mother - I call it The Intervention - she had lost almost 40lbs in 1.5 years. On her own she wasn't taking her BP meds correctly, wasn't managing her arthritis pain, and wasn't eating properly because she was feeling poorly almost all the time. And of course, when her PCP told her she likely had Alzheimers, she was in denial. She was 80 at the time.
We got her BP and arthritis meds managed, and ran tests and imaging to rule out GI issues. At the end of it all, mom's weight loss was due to her changing perception and palate.
In the beginning, a full plate was unappealing to her, she'd say "it's too much, I'm not that hungry" and push it away, so less food on the plate, much less, 1 tablespoon per food item and no more than 3 food items; when she finished, I'd ask if she wanted more and sometimes she did. Her favorites at that time were mashed sweet potatoes and mac and cheese, so every day she got one of those. I found she enjoyed nutritional drinks, i.e. Ensure she called her shakes, and would drink those on her own. Plus, I had her favorite snacks available to her at all times, like individually wrapped cheese, fruit cups, and nuts.
I found that rather than focusing on 3 individual meals, having enough calories available for mom to choose from was just fine. Once she started feeling better, she steadily gained to a healthy weight, which she's maintained for the past 4 years.
As her Alzheimers advanced, she became a bit less picky, although still not happy with a loaded down plate. She's in a Memory Care community now, and all the staff tell me she's a "good eater".
Sending prayers for strength and patience {{{hugs}}}
I don't agree with the "15 year journey" either, but I was just trying to demonstrate she's in perfect metabolic health, has the heart of a 50 year old, never drank or smoke etc.
She has no problem taking her pills. The issue is we need to get enough calories into her so she can actually take her pills on a full stomach.
Wishing you the best of luck finding the medical answers you seek.
I'm so sorry you are dealing with this distressing situation. I agree with everything Lealonnie stated.
You wrote: "..she is 80 years old and was deemed to have another 15 years on this journey by the chief geriatrician at a Harvard teaching hospital."
NO ONE knows for sure what anyone's health and life trajectory will be so please take that prognosis with a large grain of salt. That doc's comment is based on no other variables occurring. If she's already 80, she could easily have any number of other health issues within the next year or so, like falling, a stroke, etc. Then her eating habit will be exchanged for something else. Not trying to add something else to worry about, just that giving you a long-term perspective of possible outcomes will help you to have as realistic an expectation as possible, and hopefully allow you to better assign your limited time, resources and energies as you work to help her. Bless you for being there for her! May you gain peace in your heart...
Agree with you about the 'deemed to have another 15 years on this journey...." Grain of salt indeed! It's one thing after another with dementia/ALZ and such a thought is unbearable.
My mother is 95 in Jan and 'only' dealing with dementia (thought to be vascular) for the past 5 years and has accelerated dramatically in that time period. My Aunt Connie suffered with ALZ for approx 7 years before it took her life, mercifully.
The only thing that remains constant with dementia/Alz is NOTHING. Everything changes constantly which keeps us off balance and that's probably THE worst aspect of it all.
Utterly irresponsible prediction and not worth taking into consideration IMO. I wish I had a dollar for every mistaken prediction/diagnosis by a doctor I've experienced, starting with the OB who told me I was having a boy, then blamed me for having a girl.
Becoming 'finicky eaters' goes with the territory with dementia and usually, they resort to only wanting foods that taste sweet, although that can change too. Finger foods are a good idea, and small meals that are offered throughout the day (healthy snacks) are recommended. The thing about dementia is, once they get an idea stuck in their heads, you cannot chop it out of there with an AXE! So if your mom believes the oatmeal is making her vomit, then it's making her vomit PERIOD. You won't change her mind on that, so remove oatmeal from her menu. Arguing in general is an exercise in futility with such elders, so find a way to avoid it!
If the meds can be ground up and put into the food she will eat, that's a consideration. You don't mention your mother's age? For me, I feel that dementia robs a person of their quality of life, so taking life extending measures are cruel anyway. If you can't administer her meds, so be it. If she won't eat but a few things a day, offer other things that look/sound appealing and leave it alone if she refuses. Palliative care means you do the least invasive/annoying/bothersome things to an elder and just let them be. But keep them safe and keep the chemicals out of reach, etc.
If you feel she's medically depressed, the doc should be willing to write a script for anti-depressants to see if they help her. Depression is common with dementia; my mother has been taking Wellbutrin for 10 years now and the further she declines with dementia, the worse her depression gets. Nothing helps after a while, frankly. Keep in mind, too, that the more prescriptions a demented elder takes, the higher the risk the dementia increases! Many doctors like to keep the scripts to a minimum for that reason alone, and to make sure they can narrow down which script is causing the problem when one does crop up. Some meds can cause hallucinations; my mother was seeing mice crawling on the floor when she was put on a Scopolamine patch for vertigo!
Dementia/ALZ is really a complicated issue with no clear-cut 'answers' which is very frustrating for us 'children'. You may want to look into Memory Care AL at some point when things get too difficult to manage at home for your brother. I could never, ever handle my mother at home; her issues are way too numerous (she's fallen 81x to name ONE issue) and she's wheelchair bound and incontinent, so the Memory Care has been a huge blessing for both of us.
Go to Alz.org to read up about the disease and get a copy of The 36 Hour Day which is a phenomenal reference book on the subject; lots of great tips about everything in there.
Wishing you the best of luck with the hardest thing you'll probably ever have to deal with in your life; that's what my mother's dementia has been for me. Just last night she started having delirium and it about wiped me out. Sending you a hug and a prayer for strength.