Choosing an acceptable meal or menu

dancsfo

I ponder whether to ask a PWD what they want to eat, or whether I should just choose what is healthy. The former brings some joy but may not be healthy. The latter may be good for health but a person may dislike it. Ideally, you can find something that meets both needs.

I understand that the sense of taste or smell declines, so that what was desired before may not work anymore. There's also the issue of not remembering what one ate, so you can end up with repeats.

I read this document which discusses many issues (including safety) which depends on the stage of dementia. Any good experiences to share?

https://www.alz.org/help-support/caregiving/daily-care/food-eating

Emily 123

Hello,

It seems like that's written for earlier to mid stages. It can't hurt to be as healthy as possible, as long as it's enjoyed. Repetition shouldn't be an issue because of the memory loss.

Even back in stage 4, my mom was becoming pickier about her foods--wouldn't touch rice, wouldn't eat meals where food was mixed together, like in a stew.

I think you take your victories where you can, and go with what works, and that can vary. Eventually keeping on the weight becomes a challenge.

dancsfo

Thanks @Emily 123 I agree that keeping weight is getting harder, and my mom's doctor set-up a session with a nutritionist, but those recommendations are so hard to keep. They recommend weight gaining smoothies, and to eat more than 3 times a day (add snacks, or small meals), but when you're picky and don't like smoothies, or don't "feel like" eating, it's hard to force it. So I thought of making things one would like.

harshedbuzz

I feel like this nutrition is a moving target in dementia.

In the earlier stages, diet is part of best practices. A diet like the Mediterranean, or DASH or diabetic if indicated, is best if it's what the PWD is used to and will eat. This is especially true if the PWD does not have anosognosia and is focused on what is best.

But as you hit late stage 5, I would prioritize "joy" for the PWD and ease for the caregiver. Food, along with scent and music, are among the last things PWD can enjoy. By mid-stage 6, feeding becomes about maintaining safe feeding practices and getting calories in to minimize the inevitable weight loss.

HB

dancsfo

@harshedbuzz Thanks for the insights. It's quite complex and I admit it is hard for caregivers to make appropriate tradeoffs (especially if the meals are prepared for the caregiver too, who may have their own needs)

M1

I'm impressed with how our MC does it. They always start lunch with a very spicy soup (usually containing sausage, beef, or chicken with beans and vegetables), then they have a choice of two entrees--one of which may require a fork, and another that is strictly finger food like chicken tenders or sandwiches. Gives a good choice. There is always a dessert, and there are also mid-morning and mid-afternoon snacks. They will also prepare a pureed diet for anyone who needs it. Seems to work pretty well. I take picnics on weekends with treats like fried chicken or cheeseburgers, and keep her supplied with cashews (her favorite) and/or cookies for her to keep in her room. Easy for us, because she's never had a weight problem or diabetes. I figure at her stage she should have what she wants. She clearly eats better when I go to share a meal, so I'm trying to be there most lunchtimes.

dancsfo

Those are great ideas, and MC has lots of experience so I would trust what they do. I think the spicy soup makes up for the loss of taste or smell sensations. Not everyone may like that, so I can try to have some seasoning at the table (perhaps some spicy sauce)

SDianeL

My DH is down to 2 things for breakfast. Cereal with banana or waffles and maybe bacon. After his diagnosis, one morning I fixed eggs and he looked at me and said "I don't like eggs" and I said since when?? We had been married for 38 years and he always ate eggs once or twice a week. It's been like that ever since. He says he doesn't like chicken but will eat it in soups. Tonight I made chicken, gravy, stuffing, peas and he said it was great. I don't ask him what he wants. I realized he couldn't choose early on when we were still going out to dinner. The men overwhelmed him. Sadly, we no longer do that. I just fix things until he tells me he no longer likes it and then take it off the list or try to mask it. He no longer recognizes food or the names of most foods and will ask "what's this" His latest thing he no longer likes is lettuce. His doctor said to watch his diet since he's diabetic but after I explained the challenges, she didn't press it.

dancsfo

@SDianeL Thanks for sharing. It must be so hard, you think you understand then it goes another way and it's so unpredictable, and seemingly random or arbitrary. You're doing a very pragmatic thing: to keep trying and then try to avoid things that don't work. There's no easy way to predict.

leilani

In the early days of LO dementia, we both discussed her menu together. Now in the later stages, I just give her all her favorites. Everything is sweeter and dessert like. Probably not the healthiest, but it puts a smile on her face and at this point, that is all I want.

dancsfo

@leilani Yeah, I think providing some enjoyment is all we can ask for. It's not like when you are choosing a healthy diet as a young adult.

GothicGremlin

Now that Peggy's on the cusp of stage 7, her eating habits have really changed. I wouldn't say she was ever a picky eater, but there were a good number of things she'd avoid. Now she eats just about anything you put in front of her. I've watched her eat eggplant (which we both hate). This is all good, but she doesn't eat a lot of anything, so she's starting to lose weight. She's finger food only at this point.

M & I keep her supplied with chocolate. Ritter Sport dark chocolate with marzipan is a particular favorite. Once a week I'll bring her homemade brownies or cookies. We keep the chocolate supply in one of her dresser drawers. We tell Peggy it's the emergency chocolate. "In case of emergency ..." 🙂 We can usually get a smile out of her that way.

She's pretty healthy overall, no cholesterol, blood pressure, diabetes, etc., issues, so we're fine for now to keep feeding her sweet tooth. But I'm also of the mind that here we are at this late stage, why not give her the stuff we know she likes? These days I'm all about the joy.

I'm generally impressed with the food she's given at memory care. Dinner is beef,chicken, or fish, a vegetable and a starch. There is always a dessert. They have breakfast, lunch, and at least two snacks. Sometimes there's a snack at the after dinner movie.

dancsfo

@GothicGremlin That sounds like a good situation, and not being picky is almost a blessing.

JeriLynn66

I keep my FIL supplied with dark chocolate, his absolute favorite.. and he has come to enjoy Gatorade Lite.. he’s 97 and has dementia so why not whilst he still can??

HollyBerry

My partner is stage 3/4 and if I ask what she wants for supper or what I should pick up at the store, I get no help at all. I"ve noticed in the past few months, she's stopped asking for anything for meals - no more frozen pizza several times/week, no canned soup - and she only asks for a few favorite junk foods. She's also not complaining when I make breakfast (finally! no burnt pans!). I can finally make meals again with actual food, now that she's off the frozen pizza jag, and she'll generally eat what I offer, good or bad. I"m noticing that she doesn't remember certain foods or how to eat them (I need to slice a baked potato open and mash it a little with a fork to give her the idea of how to eat it. She didn't remember ever having French toast and thought I invented it. She can't get her brain around the idea that you can ask for something at a restaurant with one or two things left out, or on the side, and that's ok.) She's never really LOVED food like some people do, so it's not a surprise that she could go all day eating nothing but a few granola bars - it's a surprise that she'll eat food I put in front of her and actually tell me it's good! I worry about what the later stages will be like as her list of acceptable foods gets shorter and shorter.

dancsfo

I realize that many PWD's have lost some sense of taste, and can say "it's too salty", "too bland", "too sour" (for pickles) etc., even for the same item during the same meal. So I have not seasoned dishes heavily, and tried to use condiments (since you can always add, but not take away seasoning or saltiness). Take-out or frozen/prepared food is a bit harder to deal with, since they may not come bland.

However, using condiments hasn't worked well lately, if a PWD may repeatedly shakes salt or Tabasco sauce on a dish. So it can become inedible (at least to me, and bad if it's a shared platter)

So my response has been to hide the condiment after PWD uses it, figuring what's out of sight is out of mind. It's a bother hiding things and bringing it back out when PWD insists on it, but it seems to work. You can also ask PWD to taste something before seasoning it, if a hand goes to the salt-shaker early on.

I came up with another idea, which is to use seasoning that's obviously visible, like mustard. Stuff like salt or Tabasco sauce blends into the dish, so if you forget you added it, you will do it over and over. If you see a dollop of mustard, you know it's there, plus you actively dip food into it, so it seems to deal with personal preferences of that moment.

At this point, I don't care much for authentic cuisine and condiments, so I'll try anything like salsa, ketchup or some thick visible sauce. Another thing I tried it to dilute some sauce, like a chili / Tabasco sauce, so it can't be over-used in a few shakes,

I'm wondering if you came up with some trick, or perhaps had seen something at some elder's facility.

I know we have bigger challenges to deal with, including just getting a PWD to eat and not lose weight, but I'm trying out these things and seeking and sharing ideas.

H1235

What about giving two choices. Or let PWD pick the lunch meal and you decide dinner. Maybe you pick the main dish and PWD picks from a choice of side dishes.

dancsfo

https://alzconnected.org/discussion/comment/211995#Comment_211995

That's a good idea. Some feeling of autonomy (or "agency") can make PWD still feel better. I sense that being treated like a child upsets a PWD.

Iris L.

Please be aware that a characteristic of dementia is the inability to make decisions, even seemingly simple decisions. So simplifying or even eliminating decision making can be a helpful accommodation for a PWD.

Iris

fmb

Tastes change as the disease progresses. By Stage 5 or so, many people with ALZ crave sweets above all other foods. DH lived pretty much on coffee and ice cream for a couple of months in early Stage 7, though as he progresses through Stage 7, he is eating nearly everything on his plate despite it being pureed (and rather unappetizing). Ability to use utensils and manage food also changes, with some people graduating to finger foods for a time. DH has mostly forgotten how to load a spoon and get it to his mouth and is now hand fed.

tigersmom

@dancsfo , I’ve been struggling with this since DH was diagnosed; we’re mid-stage 5 now. As others have said, sweet is definitely preferable to all else now. Softer textures are preferred, and crispy is still public enemy #1. Interestingly, though, sometimes he surprises me. After refusing to eat raw red peppers a while back, I put them in a salad the other night and he pronounced them the best thing on the plate (they were pretty sweet). I have given up on healthy breakfasts and serve waffles or the occasional doughnut (which he loves). He will still eat a pretty wide variety of foods, though I don’t serve meat or chicken since he never ate that pre-dementia. I find what works best is stuff that looks familiar — a protein, starch and a vegetable, as long as the vegetable is not hard to chew or bitter (goodbye, broccoli rabe and arugula). Non-bitter greens like spinach are always accepted, and so is zucchini. He loves sweet potatoes and I serve them several times a week. He also loves sloppy joes, which I make with ground turkey or a meat analog. For a long time now he has been unable to make choices, so I just try to serve things that might ping recognition (stuff he might have eaten when he was a kid). I am lucky that he still likes vegetables. For dessert, Trader Joe’s sells mango ice pops that have a little vanilla ice cream inside; we both love those. If your LO is not lactose intolerant, IME nothing puts on weight faster than chocolate milk. Or real milk shakes, Boost be damned.

dancsfo

https://alzconnected.org/discussion/comment/212058#Comment_212058

This is all very useful. I admit I get by with a lot of trial and error, and I haven't been methodical by writing down what works. If it's a particular Trader Joe's mango yogurt that seems to work, I buy it again, but for all I know, there may be a pattern on why, such as lack of tartness in other Trade Joe's yogurts. I just haven't been methodical in figuring out the reason. For all I know, there's no rhyme or reason.

Hints like "stuff eaten as a kid" are good things to try and remember. As many of you know, it's fine to repeat a menu, since I get responses like: "I haven't have that in a long time! And I like it" (even though it was served just a day or two before), so there's nothing wrong with that. There's an odd benefit for forgetting if it simplifies menu planning.

I too don't focus on healthy anymore. I agree that waffles or doughnuts are fine in the grand scheme of things. It's just a habit to try to eat healthy.

harshedbuzz

@dancsfo I think you're onto something with the "stuff eaten as a kid" thing. I, too, found that dad was more accepting of foods from his childhood.

Pre-dementia adult dad ate a more Mediterranean diet of simply prepared meats, fish and veggies and rarely ate sweets. As a kid we went weekly to an ice cream shop after her did his payroll on Friday nights where we'd enjoy sundaes and dad might have a BLT or coffee. Flash forward to dementia times, and he was putting away at least 2 cartons of ice cream a week plus cakes and cookies.

He gravitated towards "homey" old fashioned meals for a time— meat with gravy or sauced pasta were favorites. I wondered if the liquid made them easier to swallow for him. He also tended to order foods a child might in restaurants (often off the kids' menu) like chicken fingers. I recall the last time I visited in FL during mom's near-death on his watch experience months before he was finally diagnosed. The night before I was flying home, he wanted to take me to dinner but insisted in 1) me driving and 2) him sipping his cocktail in the passenger seat. I refused and there was a terrible row. I needed something to eat and drove to the nearby McD drive-through (not my jam, but I didn't know my way around and it was after 9pm) where I bought him a small burger, fries and drink— they gave me a Happy Meal and he was delighted to wolf it down. To my knowledge it was the only Micky D he'd eaten since 1976.

HB

tigersmom

@dancsfo , just realized I wrote about breakfast and dinner but skipped lunch. Here is where the repetition really comes into play. Almost every day it is peanut butter with apricot preserves, unless I swap out peanut butter and banana. Tuna is popular, too, as long as I use celery and not onions (my mom put onions in everything, and I had a tendency to do that, too). Always served on soft white bread — he can get his fiber elsewhere. If crusts are a problem, cut them off. If size is a problem, make triangles. For dessert, I cut up fresh fruit — orange segments, apple, pear or kiwi slices. Sometimes I peel them but lately not. I serve them on a board or platter so they can be eaten by hand. I don’t bother with anything with pits, much as I love cherries. And as a mid-day treat, cookies, either chocolate chip (childhood favorite) or chocolate shortbread. I use the latter as a bribe a lot — “if you’ll go pee for me, we’ll have cookies when you return.” Whatever it takes. I am shameless.

dancsfo

https://alzconnected.org/discussion/comment/212124#Comment_212124

Thanks for the ideas. I agree. I've started to rely on simple cold sandwiches too, on soft-bread (no multi-grain or chewy rolls). Hot lunches are too difficult to deal with. If the appetite goes away, then it gets cold and no longer good to eat. Cold sandwiches can wait for a few minutes, or wrapped and put away until later.

I now stick with the same things a lot lately — for example, swiss cheese — has some flavor that PWD likes but isn't too strong, it's soft to chew on, so that's on the table daily.

I used to serve "laughing cow cheese" — semi-soft cheese triangles in foil wrap that was liked. But unwrapping the foil became too much of a hassle (Insistence on "I'll unwrap on my own" yet can't figure out how to unwrap). So now I just cut slices of swiss cheese and put on a plate.

Thanks for reminding me about pits in fruits. Cherries and stone fruit like apricots are in season, but don't want to deal with accidental swallowing or chewing of pits. So it's apple or banana slices, which are available year-around, so there's a routine to settle on. Fruit in syrup (mandarin oranges or peaches) from a can seems to work (maybe it's the sweetness?) but I kind of wince at it when fresh is available. But maybe it is nostalgic thing from younger days?

You made a good point about being shameless. A caregiver has a different set of goals. It's not like we're running a restaurant or gathering praise on taste. It's a bit crass, but it's really about delivering nutrition efficiently and safely, with a bit of joy or variety as a bonus if you can swing it.

tigersmom

@dancsfo , I’m glad your PWD still enjoys cheese. Speaking of praise and running a restaurant, I got a terrible review the other day when I served three slices of smoked Gouda on white bread as a sandwich. I believe he said it “tastes like…(rhymes with hit).” So it’s back to peanut butter for him. Hang in there and keep trying. Whatever works, rinse and repeat. You are doing your best, and this is a pretty tough audience.