Mum won't Eat - inevitable consequence

Lynne

Registered User
Jun 3, 2005
3,433
0
Suffolk,England
Sorry folks, long one ... 'Are you sitting comfortably? Then I'll begin. (Yes, I'm THAT old!)

OK - quick recap: Mum, 89 years old (but a 'very young for her age' person), mid-stage Alzheimer's, pretty fit & mobile up until about 3 months ago, very bad short-term memory loss, lots of repetition but still mainly lucid. Still “knows her own mind”, though generally easy-going in nature. Lives in own bungalow with me as 24/7 live-in company & carer, but she’s losing her eyesight through macular degeneration, which limits interests & possible occupations. Obviously a depressing state of affairs for her/us. Can still watch TV, but not follow a plot for long. Doesn't wander, not incontinent (apart from a few recent occasional accidents). Ex Nurse, aware of what Alz. Disease is/becomes.

Became increasingly anxious in April, after a week's emergency Respite care (1st respite experience for either of us, excellent care). Mum has absolutely no conscious memory of it, but since being home has started to have nightmares about “I couldn’t find you” and “I was with a lot of people I didn’t know” and so on (& on & on & on ... ) and increasingly anxious about everything, but in particular being left alone, even for half an hour for me to go shopping. It doesn’t seem to be an attachment to home, as she will happily come out with me rather than being at home alone.

During the last 2 months, she has wanted to stay in bed all the time and her appetite for food has dropped off to nothing. I have tried all variations of getting her up, from 9am to 5pm, to try & break the pattern. She will stay in bed all day if left, but that leaves no window for food (or appetite for it, since she’s taken no exercise of any kind) so I don’t leave her there. I appreciate that while she is in bed she is not burning off any precious calories, but neither is she receiving mental stimulus of any kind, and her muscle tone – such as it was – is disappearing fast, not to mention her Quality of life. I’ve therefore been getting her up whether she wants to or not at about 11am latest to have breakfast (cereal & prunes, her preference), help her wash & dress, watch the lunchtime news etc. During the afternoon I try to take her out somewhere so that she gets a little gentle walking exercise at least, and some social interaction with someone other than just me. That’s been the plan, anyway.

In the last 3 weeks or so, she has become really weak on her legs. Not surprising, because I would guess she’s eating about 400 calories a day maximum and even that is just ‘whatever I can get her to eat’ rather than a balanced diet, and then only a mouthful or two. Full milk coffee, toast & marmalade, quarter of a sandwich (ham, fish paste or chicken usually), fish fingers, ice cream. After 2 mouthfuls she says “I’m full up” and then I try to spoon-feed her or finger-feed her a little more. Anyone who’s tried to feed a reluctant toddler will know how successful that proves to be! She’s always been quite a fussy eater, even when she had an appetite. She now weighs 4 stone 6 lbs.
Granted she is only 5ft tall and has always been petite, but 6 months ago she was 5 stone 5 lbs and not shakey. 4 years ago she was a healthy-looking 7 stone and really active (b4 Alz). She’s not ‘still losing weight’ now because she’s down to skin & bone – no more fat/muscle to lose.

THINGS TRIED:
Favourite foods (obvious)
Fortified drinks (from Dr., he prescribed a Variety pack to experiment with)
She doesn’t like them - Won’t touch them. I did manage to get some into her by incorporating mild flavoured ones into coffee, jelly desserts, fruit drinks etc., but not enough to do any good. (Getting her to drink more than a sip or two of anything is a lost cause too, although I do still try.) Also, although he did give me a prescription for them, the Dr expressed his reservations about them, in that he is concerned that over-reliance on them can lead to kidney failure.
Outside Carer coming in to give her a meal (theory being she might respond better to someone else)
This scared the hell out of her, and made her anxiety worse. "Who is this? :( Aren't you going to look after me any more? :eek:" We tried it for 3 weeks, reaction the same every time, followed by heightened anxious state for rest of the day.
Increasing amount of gentle exercise (to improve appetite) – lots of moaning & whingeing, even crying, not much exercise.
On one occasion (walking round the block locally) gave her a piggy-back home! On another, had to get a taxi. You can lead a horse to water ... etc.
Drumming up more Social interaction: tried that – didn’t work, extended family spread all over the country but none local, & extra ‘local resources’ like additional daycare not available.

Two weeks ago I called the Dr out for a home visit, at my wits end to know what to do with her, and very worried about how unsteady on her feet she had become.
All he could tell me is “I’m afraid this may be how she will go.” Don’t get me wrong, I know he’s only being truthful and straight with me, which I have always asked him to do. He’s a good, kind man and a good GP. But holy s**t, *** am I supposed to do now?

In the last week Mum has had several ‘near miss’ stumbles & falls (when I’ve caught her) & two actual falls. The first was on Saturday evening at Mike’s house; we had just arrived, she was in the act of sitting down on the couch when, instead of leaning back, she toppled forwards and pitched head first on to the carpet. No major damage done, just a little graze on her forehead; carpet-burn really. But worrying, obviously. Within 10 minutes Mum had no recollection of falling, no ill-effects.

Today (Monday) she toppled over backwards when getting out of bed to go to the loo at about 7a.m., hitting the back of her head and her arm on bedroom furniture on the way down. She didn’t lose consciousness at all, and only suffered a small cut to her head and another on her arm, and had a fright, and then embarrassment because she had wet herself. I lifted her back into bed, changed her wet PJs for a clean pair of pants, put a dressing on her arm and sat with her for 5 minutes until she was calm (fast asleep, in fact!). Then I put the kettle on for a cup of tea and heated her a wheat-bag in the microwave in case she felt cold (shocky). But she didn’t; when I woke her half an hour later, she was fine (if ‘fuzzy’, but only as is normal for her these days), no pain anywhere, good pulse, warm. Again, no memory of having fallen. At 9a.m. I phoned the health centre and asked for an urgent home visit. At noon the Dr arrived (not our own GP) and gave Mum a thorough check over; head, arms, legs, hips, collarbones, the lot. Slightly bent in a couple of places, but nothing broken. Afterwards I asked his advice about the lethargy > non-eating > no energy > lethargy roundabout. Basically, same answer as Dr #1. Kindly delivered, but the same. If she won’t eat, she will die.

So, my lovely friends, the experts` verdict has been spoken but - not being ready to knuckle under for that yet - I come to you for ideas. Please. Any ideas, however obvious, will be welcomed. Naturally I hope & expect I shall have tried many of them, but sometimes you can be so close to a problem that the blindingly obvious doesn’t occur to you. Help, please.
 
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christine_batch

Registered User
Jul 31, 2007
3,387
0
Buckinghamshire
Dear Lynne,
I feels so much for you with this problem regarding eating.

A brilliant Consultant once told me if a child is not taking any food, then give them chocolate.

You have tried so many ways to make your Mother eat and with the falls it is a constant worry.

Perhaps the respite although they took good care of your Mother, this may be a knock on effect.

Although both Doctors' have given you their verdict, it does not mean that as Carers we are going to give up easyly.

I do hope that someone comes on line and gives more advice but apart from chocolate, cream cakes - something different to try.

When Peter went through that stage, I use to give him Guinness or Mackeson but did check with the Doctor regarding medication.

I wish you all the best
Christine
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Lynne - all I can suggest is additional calories in the food she IS eating: additional fat (butter/cream), more sugar, possibly the addition of protein powder in some things (available from your local health food store). I found that fruit based drinks seemed to work better (with the addition of protein powder). Basically, focus on nutritionally dense food. My mother seemed to get bored with the act of chewing, for what it's worth, so liquids that could be sucked through a straw were good.
 
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Grannie G

Volunteer Moderator
Apr 3, 2006
81,447
0
Kent
Hello Lynne

First the food......

Dhiren is losing interest in food too but is not at your mother`s stage yet.

I can only suggest hourly feeds of very small amounts, especially high calorie food that does not need too much chewing, food that slips down.

So if she likes ice cream, a couple of spoonsful every hour, full fat dairy ice cream, Cornish ice cream, or make your own custard ice cream with eggs.
Have you tried egg custard, a very old remedy everyone used to make for the sick. It just slips down.
Or old fashioned blancmanges, of different flavours.
Milk jellies. Evaporated milk jellies.
Would she eat smoked haddock steamed in milk or steamed plaice. My grandmother used to love steamed fish with buttery mashed potatoes.

Now her anxiety........

Her anxiety identifies her dependence on you. She would prefer to go with you than stay at home because she is frightened something might happen to you and she`ll be left alone.
Dhiren doesn`t like me going out and leaving him. He is frightened I`ll have an accident. He doesn`t even like being in a room by himself for long. he says he is lonely.

Perhaps she is drawing to the end of her life. She is very old and very frail. But as a devoted daughter You are not prepared to let her go without knowing you have done your very best for her.

Love xx
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Dear Lynne

Nothing much to add to the excellent suggestions you've received. Perhaps make tiny ice lollies from Fortijuice, sometimes sucking on something cold can be pleasant, and maybe easier on the digestion than full-fat foods?

Apart from that, just keep trying. For your own sake you need to know that you never gave up.

With love and hugs,
 

connie

Registered User
Mar 7, 2004
9,519
0
Frinton-on-Sea
My dear Lynne, feel the desparation and sadness in your post.

I sat and watched last week as you tried to cajole your mum to eat - what was it - less than a 6th of a sanwdwich and about 2 strawberries, at best, and cream. I just do not know what to reccommend.

Sylvia's words:
I can only suggest hourly feeds of very small amounts, especially high calorie food that does not need too much chewing, food that slips down.
but certainly you need to get her up out of bed for hourly feeds.

I know her first words to me, after I greeted her were:
"yes, but I am not awake yet. Feel very tired"

Sending my love to both you and mum. Take care sweetheart.
 

gigi

Registered User
Nov 16, 2007
7,788
0
70
East Midlands
Hello Lynne,

I'm sorry to read about your mum's loss of appetite/reluctance to eat..that must be so hard for you.

Everyone has given good ideas...one thought from me..full fat yoghourt and honey. When dad was ill and could no longer manage solid food we fed him on this.

Thinking of you, pet.....

Love gigi xx
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
Any ideas, however obvious, will be welcomed



Silly question I know , but I am wondering if the doctor ordered full bloods tests to be done on your mother , also taken urine simple ? As I am wondering could something else be going on, beside the dementia
 
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Tender Face

Account Closed
Mar 14, 2006
5,379
0
NW England
Dear Lynne

Once upon a time there was a daughter called Karen thought her mother could defy everything ....... well, perhaps not - but with her daughter's help, we were going to prove every doctor wrong, ever, ever, ever in the world .... sound familiar?

You know you can rely on me to play devil's advocate - and I will apologise now if setting down my thoughts offends anyone - especially you - but based on my own recent experiences with my own mum wondered if sharing this helps ...... and, just for you, I have reverted back to my original signature...... I respect anyone's right to choose 'life at any cost', but just as I knew little about dementia a few years ago, as you know I have been on the steepest learning curve of late regarding palliative care .....

Ok so you've been given a verdict and don't like it, of course. We didn't much like the original diagnosis did we? And for some time - for me certainly - I could seek great solace in denial ....... You know I will fight and fight, and have done ...... but perhaps there comes a time to stop fighting? A time to accept and adjust accordingly? And you know what a hard thing that is for me to do ....... I don't particularly sit easy with the phrase 'giving up' .....

But what I have been taught these last few weeks - mostly from the hospice and now mum's NH (you know that fairy tale, too - no way is my mother ever going in an NH :rolleyes:) has been about quality of life, respecting mum's wishes (as best we knew them previously or she can express them now) and accepting that perhaps sometimes it is best to let nature take its course (again very much dependent on individual beliefs).

Sure, with mum's lack of appetite at first (now cancer confirmed of course) I went through all the 'tempting' scenarios ..... and indeed, both medics and now nursing staff reassure that's all can and should be done .... 'forcing' anything is not a part of palliative care. As far as possible, balancing the risks (even of aspiration) mum gets what she wants when she wants it ... if she wants to sleep all day she is 'allowed' to ... if she wants gravy on her ice cream or custard on her pureed peas what harm is it doing if she enjoys it? If she only eats two mouthfuls but enjoys it - that is what matters now ......

Lynne, I'm sure you already know this has been one of the toughest times in my life and the soul-searching has tortured me ... I was terrified of having to make the decision about artificially feeding ...... but terrified more by mum's prognosis .... and NO - I haven't give up ... I have just had to shift the focus from preserving independence - preserving life even - and concentrate now at this time 'fighting' to keep mum pain free and comfortable .... to accept the medics telling me that her lack of appetitie is her body's natural way of communicating her needs .....

And therein the underlying problem ... what *I* think and want may be very different what my mother wants .... and what right do I have to say I am not ready for this when she was/is communicating that, actually, she is? I am happier now that this is not giving up - it is simply changing focus...... and rather than fighting to maintain life the battle is to ensure there is as much 'quality' as she can enjoy .... one fight I was never prepared for. Who is?

But, Lynne, I know I am STILL doing my best for her ... as you are trying for your mum .....I can't take away the dementia nor the cancer and the 'happily ever after' was never meant to be ...... I can't deny I am gutted nor that I am struggling to 're-learn' what care can be about ...... but the learning is damned hard .....

My only practical thought - on top of my hugest love, sympathy and empathy which goes without saying - might it be worth contacting the local Palliative Care team? Who knows ...... you may not need them just yet .... but perhaps you'd find some comfort for yourself just now? You might not be ready to 'knuckle under' but perhaps mum is? We all know caring takes an infinity of selflessness ... I know I have to dig deep to find my reserves at times ...... but 'doing our best' takes on different meanings as the tides shift ...

I send you all my love to you and mum for what it's worth ..... and know I am breaking my heart with you ...

Karen, x
 

SusanB

Registered User
Jan 15, 2008
155
0
Hove
Hello, Lynne

Your post was very moving and sad and I thought I should just add my thoughts to the suggestions of others on here, and you may not totally appreciate what I have to say.

Your dear old Mum is reaching the end of her long life and her dramatic decline in appetite and wanting to sleep all day are surely obvious symptoms of this. You simply cannot make her eat more than her body and mind will accept, it will distress her and upset you also.

Two doctors have given their honest opinions as kindly as they can.

Do try to let her go - organise some end of life care or arrange another way for her to pass away peacefully when the time comes in the most dignified and gentle way possible - very soon it seems. I know that you love her and that you don't want to lose her but I think you may need to.

When my Dad died everything "slowed down" - he slept often, ate very little and frequently "drifted away" from us. He then died very quietly and peacefully one Sunday morning two years ago. I recognised the signs and was able to talk to Mum about it. She did accept the situation but it was very hard

The suggestions on here are kindly meant, though I think they mostly miss the point. Hope you're not hurt by what I've said.

Susan
 

Lynne

Registered User
Jun 3, 2005
3,433
0
Suffolk,England
Thank you all very much

All suggestions are gratefully received, all comments & opinions re. her age, end of life etc. accepted in the kind spirit they were made.
Any further contributions will be welcomed also.

Lots to think about & mull over, so this is 'just' thanks, a LOT.

Mum is so weak at the knees now that she needs supporting physically to make it into the loo from her bedroom - about 12 feet, no stairs. The Hotpoint & I are being kept very busy, as Mum has now lost bowel control. I know for some of you this is familiar territory, but it's new for me - I haven't even had any practice with kids!! :eek:
And HOW can someone who is eating practically nothing produce so much poo?! :(
 

connie

Registered User
Mar 7, 2004
9,519
0
Frinton-on-Sea
Sorry honey that you have reached yet another stage.

O.K. Lynne, practicalities. Not sure how far advanced you are along the incontinence route. Hope that you have at least a telephone number for the local incontinence nurse/team.

In the meantime the local chemist will do pull up pads, but I know how much trouble I had to get anything small enough for Lionel. Even those supplied to the home now are too big.

One idea, childs nighttime pullups. Might just save some washing, and loss of dignity if she will wear them as knickers.
Only a wild thought! Thinking of you,take care now, love n'hugs
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
What about a commode? So she doesn't even have to go those 12 steps? Also it's possible to get what is called in the US portable sitz baths and I believe in the UK portable bidets that attach to the commode (or loo) and make clean up a little easier. Although, and forgive me if this is obvious, baby wipes are great for this. Even a squirty bottle with warm water in it would help. I would second Connie's idea about the pullups. They make them now so they're not "crinkly" which was always Mummy's issue with them.
 

citybythesea

Registered User
Mar 23, 2008
632
0
57
coast of texas
Lynne,

I so feel for you. I have been away and have just been back at the computer and able to write my thoughts. I know how you feel and as Karen pointed out we have to face certain points in life. Mom didn't eat well the last couple of months of her life. I was constantly keeping with the diary to make sure she got enough to survive. I did learn tho that as she progressed I could get her to eat sweets and who cares if all she ate was a piece of cake for dinner IT WAS FOOD. I started keeping zuchinni breads and pumpkin breadss arouns and kept with the baby food. I remember on some days that I would take and make little pies for her with healthy veggies and meats...more of a pot pie type food.

I feel for you on the other issue. (Even having 3 grown kids I was not ready to have to change my mother:eek:) But we do what we do because we love them. I would suggest the pull-up type pants and to make it a little easier to transition them go ahead and put them in with her other lingerie and take out her regular panties. I found that if mom had no reminder of the others she went with the flow as if she had always worn them.

Don't take the dr. for granted that he knows everything...he may be right, this may be the way she will go....but I promise you that he has no idea as to how long this can last. With mom it was over 6 months, and I have a lovely friend whose mother is going on close to 3 years of a diet less than 500 calories a day. Granted she is at the point where she looks frail. Her daughter adds protein powder to everything. I did that too. It's a real good idea also in the sense that the body need protein to keep fighting and rebuilding tissue.


My sympathy goes out to you. I'm sending you a hug from across the little pond. I know you'll get thru this point.


HUGS


Nancy
 

Tarika

Registered User
Jul 26, 2008
111
0
I don't want to eat

Dear Lynne
This is new territory for me. My mum refuses to eat. We have tried all different options but she just pushes food away. Bottom line. If she continues to refuse food then she will die. The NH will not refer her to hospital as it won't change anything. My perspective now is that maybe it's the only control she has over her life and if she chooses to end it this way then have to respect her decision. NOT. If it were up to me I would try anything to keep her here but it's not up to me it's up to her. I don't know how long she can last but I'll be there with her.
Love Tarika
 

Lynne

Registered User
Jun 3, 2005
3,433
0
Suffolk,England
Thanks #2 (x many)

I'll try to remember & detail the things I have bought/introduced as a result of some of the suggestions.
Apart from giving you all credit & thanks for the ideas, this thread may help others on TP with non-eating issues.

She was already being offered all the full-fat high-calorie versions of every foodstuff she likes, as well as trying a few new ones which I thought might appeal
(latter not very successful; :( very picky eater & set in her ways). Will try the baby foods & protein powder added to various things; hadn't thought of those!
For anyone else trying protein powder, soya or whey derived ones have the most neutral flavour (so my helpful Holland & Barrett customer assistant tells me!) so they can be added to sweet things like rice pudding, or to savoury soups etc. Or baby foods.

Have bought Huggies Dry-Nite Pyjama Pants for girls, age 9-15 (pull-ups in other words, also made in boy-version). As she wears age 12 PJs, (she's about a size 6, no bum cheeks) they fit a treat. Don't have to put them in knicker drawer because she forgot which that was sometime last year! :D ... £5.43 for pack of 9; yes 9 :confused:.
I'm told that if you are buying incontinence pads etc. in Boots, and you have a Boots clubcard, they are discounted. (not baby/child products though :()
I expect other such deals may be available in other retailers, but have no details.

Nancy said:
Don't take the dr. for granted that he knows everything...he may be right, this may be the way she will go....but I promise you that he has no idea as to how long this can last.
It's OK, I understand that. We have a good Dr/patient relationship; he doesn't BS me and I don't regard him as infallible, but I do trust him - he's been my Dr for 20 years. Both the GPs who have seen my Mum recently have expressed the view that a move to hospital for 'assessment' would be most undesirable &, in their opinions, unwise. I agree.

Tarika, Susan, Karen & Sylvia:
I'm not a million miles away from your end of life comments & attitude myself, but watching her actually shrivel up before my eyes is very hard. She is lucid (though 'fuzzy') most of the time, & still knows her own mind in the main. I have actually asked her, in calm conversation & several times, does she want to die by lack of food. She has always replied that she does not. I would respect her right to make such a decision, as I would expect her to respect mine in similar circumstances.
I don't quite know what I could or would do differently if she'd said 'yes' actually.

When my Dad died 30 years ago, Mum & I each wrote out statements to the effect that if we had a terminal condition, we would not want the end stages prolonged just to maintain a life no longer worthy of the name. These were sent to our doctors to be incorporated with our medical records (paper ones at the time of course). I must ask if they still have them.

It is now 3 days since I first posted:
the good news is that the faecal incontinence has stopped (or she's just run out of ammo!:rolleyes:) now that we're all kitted up to deal with it.
The bad news is that in those 3 days she has still not eaten much more of any kind of food than you could put on a saucer.

Again, many thanks for your kind & loving support.

And so to bed ...
 

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Canadian Joanne

Registered User
Apr 8, 2005
17,710
0
70
Toronto, Canada
Lynne,
Just to say I'm feeling for you. It must be so hard to watch her shrivel up, as you say. I'm not there yet with my mother but I know it will come one day.

[[[[[[HUGS]]]]]]
 

bagpuss

Registered User
Mar 5, 2007
7
0
not eating

dear lynn,
we have the same problem with my auntie who has been ina care home for 2 years now, she has gone froma size 18 to a size 8 in a year, drs says shes ok but cant force her to eat, have tryed fortisips which she is not keen on, when i go in i try to give her chocolate, which she takes when she feels like it, it is hard to watch someone who was once a big healthly lady go to skin over bone, i was hugging her this morning and i could feel all her spinal bones, ribs ect... i recall being cuddled by her when i was little and it was such a comfort now i only hope sje feels the same when i cuddle her. We have had the same responce from the gp as you... i know you cant force someone to eat, but as she gets more frail she falls more..
if you find something your mother likes stick with it i say!! regards
bagpuss.xxx
 

Lynne

Registered User
Jun 3, 2005
3,433
0
Suffolk,England
Sorry Maggie

Silly question I know , but I am wondering if the doctor ordered full bloods tests to be done on your mother , also taken urine simple ? As I am wondering could something else be going on, beside the dementia

Sorry, I didn't answer you.
Yes, Mum has had recent blood tests & urine checked for possible UTI. All clear though. I think - as others suggested - I mustn't forget she IS pretty old, and as she is nowhere near end-stage dementia, her present weakness and frailty are probably more to do with her age than the Alzheimer's Disease.
But of course, it doesn't help!
 
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