Restlessness and Fussy Eating

[J@ne]

I said I'd be back! I'm spending the week with my dad. My sister was here last week so that our stepmother could have a holiday. I showed stepmum this message board and we looked at a couple of threads - I've bookmarked it and suggested she just has a little explore and reads some of your threads to see if she thinks it would be helpful - I think she will do that.

Anyway, I just wondered if anyone had any experience of/handy tips for dealing with someone with AD who is

a) extremely restless and​

b) becoming a very fussy eater.​

Wanting to go out all the time
Dad is extremely restless - I think because he was always very industrious, always working on some project, fiddling with some gadget, doing DIY, or tackling some problem. He was always a fixer - would work away at a problem (for days, weeks - even months - all alone in the garage) till he managed to find a solution, usually involving some sort of Botch-It-Yourself gadget he made out of a bent coathanger and a piece of string with a beautifully hand-turned wooden handle - he was very good at this (not to the satisfaction of me, my mum and my sister: constantly finding "gash bits of wood" screwed to things to make them work better ). So now, not surprisingly, he's bored out of his head. He can't concentrate for more than a few minutes. He can't even do a child's jigsaw any more. So he wants to go out - EVERY DAY!!!!!! Today I took him out in the morning and we went for a nice walk, had a cup of tea, went shopping (and he pushed the trolly round the supermarket and put it away after we loaded the boot Well done dad ), had lunch, hung out some laundry and dad helped with the poles, went out again in the afternoon and walked a good 10 - 15 minute walk to the shops, same back, came home and within minutes he was desperate to go out again. You'd have thought he'd been exhausted (he's spark out right now though - another night of up-and-down-the-stairs-we-go I fear ). Anyway this urge to go out every day is costing my step mum enormously - both in terms of her energy and her pocket (he does get attendance allowance so she can get some help, but petrol or bus tickets, lunch in cafe's etc quickly adds up). It's not so bad for me and sis, we're only here a week at a time, but it's taking an enormous toll on my stepmum. She's got some sedatives for him now for the night-time rambles which could help, but she doesn't want him to take them if they can get away without because she fears they'll make him more dopey and slow. I've been trying today to get him to help out with little chores and he did with some success (see above - hooray!). But all he can think about is "what do we do now..."

Fussy Eater
The other difficulty that is very trying and draining is that he's becoming very fussy with food and is starting to turn his nose up at food he always used to like. I made him a bacon and egg fry-up for lunch which went down very well - although he quibbled that the mushrooms were too dark (he adores mushrooms!) - I think his memory is partly the problem, if he has trouble recognising something, he won't risk it. I convinced him to cut one in half to satisfy himself it was okay inside, not burnt and he ate them happily. Tonight I gave him a frozen fish fillet and some peas and potatoes (sorry, veggie - not the best meat/fish chef, me ) and he really wasn't happy. Tried to tell me to take the fish out of the oven. It's so hard not to take it personally when he's picking over his food like a fussy toddler, pulling faces and grumbling. We've given up trying to cook to please him - it's no longer possible. I wonder if the AD is affecting his taste? smell? Or is it his medication? It certainly seems to be affecting his ability to recognise what he's eating or to identify something he likes on a menu.

So - any similar experiences? Handy tips? Foolproof recipies that are wonderful to eat and help people relax? I'd be really grateful.

 

[Natashalou]

fussy eating

it might possibly be that he just isnt hungry. My mother never had a particularly big appetite but she would always tuck in to cakes and sweets!! however about a year ago she began to lose weight. At first this was a good thing as she was a rather large lady, but when the loss became really dramatic the doctor became involved.
However his view was that she used up virtually no energy just sitting there all day and therefore didnt really need much sustenance. He advised as long as she drank plenty then there wasnt really much need for concern (Im not actually saying this was the right advice as where would her nutrition come from, but it was what he said)
When she moved into the NH it was of course 3 square meals a day plus tea and biscuits etc...and I thought mum was eating a bit better.
then I discovered (through my younger som who she roped in as a partner in crime) she was either trying to flush the meals down the toilet, or putting them in bags and gettin him to chuck them in the bin.
Her explanation was she simply didnt want the food and didnt want the "fuss" when she sent it back untouched.
however when I calculated her BMR it came out to about 700 which I guess she gets through milk in tea, soft drinks and the tiny bit she does consume, and as she is totaly inactive she just doesnt get hungry!

 

[connie]

I do think taste buds change, or something. Dishes that Lionel always ate, are sometimes now dismissed. Things he used not to like he eats with relish.

Maybe its the medication, maybe it's boredom. Eating is one of the things they may still have some control over. Who knows?

 

[Grannie G]

My husband is becoming very secretive, about his food and his medication.

Often, if I finish my meal before him, he tells me to leave the table and not to wait till he finishes his. I feel he wants me out of the room.

I have found food in the garden, amongst the bushes, and also tablets.

He always says he`s hungry, and tells me how good his meal is. Now I tell him if there`s too much on his plate to leave it.

He isn`t losing weight, and I still find food in the garden.

 

[jan.]

Dear J@ne,

I have found that if dad won`t eat a certain food one day, a couple of days or so
later, he will eat it. It can be so frustrating when you`ve gone to the trouble of
cooking a lovely meal, only to find most of the contents in the bin all in favour of sweet things. So many of us seem to have had the same problem at some time and i think you just have to go with the flow and give him what he wants ( within reason ) and then " reward " him with sweet things after. Try not to take it personally as their taste buds seem to definitely change as the disease progresses.

Good luck with it, and do let us know how your getting on with it.

Love Jan.

 

[Taffy]

Dear Jane
My mum is very similar, with food she sometimes doesn't recognise what certain things are and immediately says she doesn't eat that and no prompting will get her to try it, then you could give her the same thing next meal time and she will enjoy it. With the restlessness mum is a shocker she is into everything and quite clueless she makes alot of unnecessary work but unlike your dad she doesn't want to leave the house. I think that, it's all part and parcel of this miserable disease. Regards Taffy.

 

[Nebiroth]

Likes and dislikes and taste are all managed by the brain, and dementia changes the structure of the brain. No surprise that tastes change.

I think it is also partially connected to lack of inhibition, in that people with dementia do become like fussy little children with long lists of things they will or won't eat, and can become very greedy with things they do like.

My Dad has recently become very greedy for sweets and biscuits, he is always in the cupboard after them. He then complains about dinner etc with "I'm not hungry" or "I don't want that" or even "I won't eat porridge of potatoes in case I get a blockage" (with a constant diet of biscuits no surprise that constipation is a problem).

However, we long ago decided that the temper tantrums, sulks etc are not worth the trouble that attempting a balanced diet would bring, and at Dad's age and condition, at least he is consuming calories which is better than nothing. We certainly can't force him to eat things, or lock up all the biscuits etc.

 

[Margarita]

Glad to read this thread as I have just given my mother fish man pie and she does not want it .

My mother also love bacon eggs mushroom and also complains about them , no matter what why I cook them .

She eat that every day if I let her , and ready cook chicken that you get in the supermarket also lame roast , but not the potatoes she use to love , have to cut them up to small bits or she say they are to big , also every thing ales I give her she look her nose up at


About the going out , my mother use to do that every day when we got back , it was what are we doing tomorrow , could be because that’s all she had to think about , keep herself motivated like that .


All I can think is that it must be so hard to know that you can’t do what your use to doing all your life , even thought it can drive the carer mad , in wondering how to help them, to make them relies that they can’t , and then trying to make ourselves that they is ant anything we can do , its like hitting a invisible wall that you can’t get though

So I rang SW to get her into daycentre , at the beginning she did not like it because I was not with her , now the disease has progress more she does not ask to go anywhere elas other then daycentre , also because her mobility has got worse and won’t get in to wheelchair so I can take her out , so all she has got to look forward to is daycentre , and if like yesterday when the driver said to her see you tomorrow ( big mistake ) because she does not go to daycentre on Wednesday , when she got back yesterday she was adornment, that on Wednesday she go to day centre because driver said “see you tomorrow , so today she was waiting for bus to pick her up and of course (that invisible wall ) no amount of telling her other wise would convince her , they not coming, yes I am going to have a word with the driver to be care full what he says to my mother , please just say to her “ see you angina “ NOT see you tomorrow .

So can You organize day center for you dad or does he go they also and still want to go out on the days he does not go ?

 

[jenniferpa]

I wouldn't call my mother a fussy eater, although all she will consistently eat is boiled eggs and sweet stuff. Sometimes she will complain that food tastes rancid, but mostly she's not hungry. I had to be quite firm with the nursing home. At one point they were giving her her main course (large portions as well, and she simply gets turned off by that) and then waiting because "otherwise she just eats her dessert" It was like being back at school! The effect of that was that she simply went to sleep between courses and then wouldn't eat anything: for goodness sake, the woman's 89, if she wants to eat dessert first then so be it!

As to restlessness: well she's longer walking, but when she was, I swear she must have walked miles with her walker. Not going anywhere, just backwards and forwards. All day, all night. When I tried to remonstrate with her (this was when she was still in her flat, and I was sleeping in the living room, so I was awake all the time) she said she just felt so restless, and only by walking was that restlessness relieved. She'd be dead on her feet, but still pacing. I have wondered since whether it might be a version of "restless leg syndrome" since she had that in the past, but I don't know.

 

[Margarita]

I swear she must have walked miles with her walker. Not going anywhere, just backwards and forwards

My mother does that , not at night time any more thank god .

when I ask her why she does that she says , because her leg hurt her

restless leg syndrome"

never know it could be

 

[Nebiroth]

Is she taking any of the anti-psychotic medicines?

If so then a side effect called akathisia can result. It manifests as an inner feeling of restlessness, and results in the patient feeling they cannot sit still or rest leading to things like pacing.

It is not the same as tardive dyskinesia, which means involuntary muscle movements like twitches and tics.

 

[Margarita]

All my mother is on is Exbixa ( last staged of AZ medication ) Medication for diabetic , cholesterol , blood purser , water tablets .

Has Exbixa got anti-psychotic medicines in it ?

It manifests as an inner feeling of restlessness, and results in the patient feeling they cannot sit still or rest leading to things like pacing

My brother does that his on Modicate anti-psychotic medicines.

 

[Margarita]

Exbixa


Says it has anticolinnegics (substances generally use to treat movement discords or intestinal craps

Barbiturates (generally used to induce sleep) no wonder my mother use to sleep so much , not so much now, but yes at night

Neurleptics (sustenance used in the treatment of mental disorders )

Its even got nicotine in it

 

[sue38]

(substances generally use to treat movement discords or intestinal craps

Should that be intestinal cramps? We know what you mean and your description may be more accurate.

Sue

 

[Margarita]

lol @sue

 

[mel]

I always found this a problem with mum.....at one stage she would only eat toast,banana sandwiches and chips.....even so I still used to find them in various hiding places

As for wandering...mum constantly paced from room to room....this used to worry me so much...however when i asked her if she was ok she said "yes...are you?"...so i eventually accepted it as part of her.....
She always wanted to go out so I did actually manage to fit this into our daily routine.......bit disheartening though when you've been out for 2 hours,pull up at home...only to be asked"are we going out today then?"

 

[J@ne]

I knew you people were wonderful....

Thank you all so much - you've all helped a lot. None of you have said anything that surprises me but it is hugely helpful to have the reassurance that it's not just my cooking (daft as that sounds) and that my dad is "normal" for someone with AD. And to have permission to stop worrying about it. Couldn't have got there without you all.

I've printed out your comments to show my step mum - I think they will be enormously comforting to her too.

Thanks all of you - it's been a darned long day and I'm too tired to try to respond to each of you individually and dad is sound asleep on the sofa so will no doubt be bounding around again after two am.

Just to share a funny with you - you gotta laugh or you'll cry

After the second of third time he got me up last night, I said something like "dad, it's three in the morning, and I want to go to sleep" and he gave me superior look, and said "actually, it's four in the morning" . I (mentally) said "AAAAAAARRRRRRRRRRRRGGGGGGGGGGGGGHHHHHHHHHHHHH" and gently suggested he head back to bed, which he did - for probably ten minutes.

Cheers all, and a million times squared - thank you.

 

[Nell]

Someone has probably suggested this, but have you and your step-mum considered day care for your Dad? I know it can be hard to get our patients to accept day care, but perhaps you could approach it (as one TPer does) as a "club"???? Only you and your step-mum will know if it could help - even a day or two a week could give you the much needed break you so obviously need from his restlessness.

 

[J@ne]

Someone has probably suggested this, but have you and your step-mum considered day care for your Dad? I know it can be hard to get our patients to accept day care, but perhaps you could approach it (as one TPer does) as a "club"???? Only you and your step-mum will know if it could help - even a day or two a week could give you the much needed break you so obviously need from his restlessness.

Thanks Nell - he does have a day at a day centre, and he has a volunteer from Age Concern who takes him out for a couple of hours once a week so not bad support really, but he hates the centre - he was really distressed this week when he got back. He's still aware enough of what's going on to feel it's an affront to his dignity to be sent there, and he was never one to join in things. He just wants to be with my step mum. However the alternative is that she completely cracks up with the pressure and he ends up in residential care or something!

I did steal all the teabags and replace them with decaff ones - but I'll have to wait a bit and see if stepmum notices a difference.

Also I feed him up each evening - something sweet like a donut, - I read somewhere our bodies are programmed to sleep after food to ensure that we store the calories.

But the days out continue - I think it's boredom - he can't do the things he used to.

 

[Nell]

He's still aware enough of what's going on to feel it's an affront to his dignity to be sent there, and he was never one to join in things. He just wants to be with my step mum.

You could be talking about my Mum here Jane!! She too is still sufficiently aware to feel she is being patronised and to be deeply affronted and offended by anything she sees in this light. Like your Dad, she was never a "joiner" and is even less happy about joining in with "people like that" (as she terms her fellow residents in the NH!!

We were fortunate with Mum in that during her really restless stage she was always "busy" (doing what we were never quite sure! ) and therefore was not seeking extra stimulation or getting bored. Now that stage has passed she seems happy to do very little, altho' she is still terribly demanding of all of us (my sibs. and I) to visit her in the NH.

I hope your plans for your Dad are successful. Can;t remember what has been said about his medication - is he on anything that could reduce his restlessness??

Thinking of both you and your step mum and sending you good wishes.