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Flat refusals - Page 2 - Carers UK Forum

Flat refusals

Share your ideas about the practical side of caring.
Yes, good thinking. I'll give it a try!
She herself often says that when she goes to sleep at night she hopes this is 'it' and she doesn't wake up in the morning. Cruel!
Hi Jenny

I wish I’d thought of/heard of the man’s towelling dressing gown thing before mum died. Such a garment would’ve swamped mum and she would’ve loved it!
Devoted daughter??? That’s a new one on me but, actually, your comment has made my day, so thank you…. Have a cyber kiss :kiss:

Hi ExD

What your mum says about wishing she'd die in the night is probably nothing more than the blunt truth. Might she be in pain from refusing to have her incontinence pads changed regularly? Nappy rash is agony.
Ironically, she may be refusing to have them changed because that would hurt too much, even though only changing them will seriously help solve that problem if it exists. She may not realize this because of her dementia. Remember, people with dementia know when they're in pain but often cannot articulate why or where.
If your local district nurse is not involved in your mum's care contact your mum's doctor's surgery. They'll arrange a visit and a good district nurse is worth their weight in gold. Ours was brilliant, and helped a great deal with mum's incontinence problems which developed shortly after what I call her big decline.

Regarding Fortisips and Ensure Plus’s, they are like garlic, Guinness and Marmite. You either love them or hate them.
My mum was prescribed 3 Ensure Plus’s a day and absolutely loathed them with a passion and a half.
When Ensures were not available she got Fortisips instead and hated those just as much too.
Quite frankly, I didn’t blame her as they are both totally vile. They’re tooth rottingly sickly sweet with an awful slippery, slimy texture and, to cap it all, a really weird nasty after-taste... YUK and double YUK!
At first I tried diluting them with full fat milk and extra vanilla extract. That kind of worked, but I considered myself very lucky if she drank a full one a day or, very rarely, two.

I was complaining about the above to our pharmacist and she recommended another nutrition drink called Amyes (website below.)
The pharmacist gave me a starter pack will all flavours in it and a shaker. You mix the powders with full fat milk and they are absolutely delicious. Mum liked all the flavours except banana (she hated bananas anyway) but she particularly liked the vanilla, so we always ordered the vanilla.
You’re supposed to mix the sachet with 200mm of milk but I’d mix them with 400mm – more calories that way and mum would happily sip away at them all day long. What a change from me spending over an hour persuading/cajoling mum to drink an Ensure, and often failing.
The beauty of the vanilla flavoured ones is you can bulk them out with liquidized strawberries, etc. Mum's fave was an Amyes Vanilla shake liquidized with a good couple of dollops of Co-op's bramley apple sauce.

Have a word with your pharmacist and get a starter pack to try out on your mum. If I ever fall ill enough to merit nutrition drinks I hope to god I get the Amyes ones or I’ll starve to death otherwise if given Ensures or Fortisips!
Oddly enough, when my dad was undergoing various cancer treatments he was given Ensures/Fortisips and loved them…. No accounting for taste is there?

https://aymes.com/collections/aymes-sha ... upplements

I’ve just remembered that about 3-4 years ago I was asked by Carers UK to write a short paper on encouraging people with low appetites to eat. I’ll hunt it out and post it here if I can find it.

P.S. The baby blue ultra-soft, delectably snugly warm dressing gown I got mum from the local British Red Cross shop is now mine.

Found it, finally. It’s actually dated on my Word Document Nov 28th 2013. That’s nearly four and a half years ago…. My, how time flies!
I mention using bananas below. I’ve just remembered that it’s banana flavoured things mum didn’t like not real bananas.
I’m now going to change the font colour of the copied & pasted Word doc below for no good reason than I feel like it to demarcate my letter to CUK from the rest of this reply to your thread.

I’ve been asked by Carers UK to write about my experiences regarding getting mum to eat when she left hospital earlier this year. She’d had a mini-stroke and was in hospital for two weeks. In that time she lost her appetite completely and lost a lot of weight she could ill afford to lose, as she’s always been slim.

I left my job at Tesco’s to become mum’s full time carer; I’d previously been her part-time carer since Jan 2011 when my father was diagnosed with cancer. He needed someone to mumsit mum as he’d noticed that she was losing her memory, repeating herself, leaving the gas on, etc.
I’d do so whilst he was attending his various out-patient clinics, and I got a job working in the evenings so that I could be free during the day for my mumsit duties.
These duties increased as mum’s dementia (I hate that word; I’m going to invent another one) as mum’s ‘spirit wanderings’ increased, plus her arthritis also increased.

I was plunged right in the deep end regarding mum’s nutrition when she came out of hospital as I knew next to nothing about nutrition. My idea of a gourmet meal was a Chicken & Mushroom Pot Noodle washed down with a can of fizzy Orangina, or tinned spaghetti hoops on toast (white bread of course) followed by a Tesco’s Value Crème caramel or four!
To make matters worse, she hated those Nutrisip/Ensure drinks, describing them as too heavy and slimy.
So I diluted them with semi-skimmed milk and added a few drops of vanilla essence. I’d give my milk/nutrisip/Ensure mix a quick blast in the liquidiser and pretend it was a home-made milkshake. She’d now drink them…. Sometimes!
The strawberry and banana Nutrisip/Ensures tasted vile, according to mum. So I only ever used the vanilla ones, and would occasionally add fresh strawberries or a banana to my ‘milkshake’ to ring the changes.
She never managed to drink 3 a day, but at least I was getting some nutrition into her. That was a start.
I learnt via trial and error. I didn’t join the Carers UK forum until mid-september, so really was on my own.

Here are my top six tips for dealing with someone who has a poor, or no, appetite.
Everybody’s different, so they might not apply to everyone.

1) It is only human to present a pile of food to someone who needs to put on weight but, counter-intuitively, this was the first mistake I made. Mum would look in horror at the massive plate of piled high food I’d slaved over. Large portions are intimidating to someone with a low appetite.
Now I present all meals, even a Sunday roast, on small side plates.
I think it’s important that mum doesn’t feel left out, or feels she’s being treated differently, so I serve everyone with the same meal as her on the same sized plate. If anyone wants more they can always have seconds.
Plus, because I have to chop mum’s meat up into bite-sized pieces, everyone’s meat is chopped up too. I’m big on food equality as I don’t want her to feel she’s being treated like a baby.

2) Mum’s always loved fruit, and I noticed that she’d eat a lot more of it when I’d forgotten to put her fruit in the fridge after a shopping trip.
Food, especially fruit and salad, tastes much better at room temperature than when chilled. If you don’t believe me, try this simple experiment.
Take a punnet of soft fruit; place half in the fridge, and the other half outside fridge. After a couple of hours or so eat one from the fridge, then eat one of the room temperature ones. The difference will astound you; it did me.
Such a simple thing, but mum’s consumption of fruit nearly doubled overnight when I served it up to her de-fridged.
The same with salads. I’d always make these a good couple of hours before we would eat them, and leave them on the kitchen worktop covered with glass lids.

3) I resorted to tricks to get her to eat. Whenever I asked if she wanted something to eat, she’d always say, “No, maybe later.” Later on, I’d ask the same question. Her reply was ALWAYS later. I gave up asking her in the end.
Instead, I’d fry an onion, and leave the doors open so the smell of frying onions would waft through to the living room.
I’d then walk in with a plate of cheese toasties/whatever. I’d casually start munching away, without offering her any.
This would either annoy her, and she’d demand some of ‘my’ food. Or, if she didn’t ask for any, I’d pretend I was full, and ask her if she wanted the rest.
About 70% of the time my stratagem worked.
I also ended up piling on the pounds too, in my efforts to trick her into eating.

4) Although she was very frail and weak when she left the hospital, she wasn’t bed ridden. But she was chair bound though.
After about a month, when some of her strength began to return, I insisted that she joined dad and me at the kitchen table for meals.
This made a tremendous difference. Listening to dad and me squabbling/nattering away meant she sub-consciously picked away more at her food than previously. When she joined in our conversation, she’d still pick away, and would often finish nearly a whole meal.
With hindsight I wish dad and me had eaten our meals with mum in the living room, instead of leaving her alone until she could join us. Perhaps feeling abandoned at meal times made her appetite worse than it actually was?

5) Mum now eats much more slowly than before. So I found it important to serve up hot foods that taste just as nice when they’ve gone cold. Chips and roasties aren’t very nice when they’re stone cold, and taste even worse when they’ve been re-heated. But boiled and mashed potatoes taste just as good cold as when hot. Fried eggs taste, and look, awful when cold, so they’re out. But scrambled eggs and omelettes taste fine cold, which is just as well as mum can take up to half an hour or more to eat her morning eggs.

6) I’ve trained dad and me to eat at mum’s pace; again so she doesn’t feel ‘different’ or abandoned, as we all finish eating and leave the table at the same time. I’m sure the stimulation of our meal talk times is helping her in other ways too, and not just with her appetite.

Not everyone will have the time to spend an hour eating super, but if you can manage it, give it a whirl if you too have a slow eating caree.

Naively, I thought once mum got her appetite back, that would be that. It isn’t. She can go days eating quite well, then she’ll lose her appetite again, and the whole rigmarole of tricks etc will have to start up again.
I know as people get older they need less food, but mum’s lack of interest in food, unless actively encouraged, puzzles me.
Is it a symptom of dementia? I don’t know. It has occurred to me that if her brain is changing, then why would her appetite be unaffected? Perhaps some eat too much for the same reason?
Regardless, I’m convinced that if she were living alone she’d have starved herself to death by now.

Which is why all those stories I keep reading about 15 minute care visits disturbs me so much. How can a paid carer possibly prepare food, and encourage their caree to eat it in 15 minutes, or even half an hour; plus all the other stuff they do? It’s an impossible task UNLESS hours are spent on it; not minutes.

Mum’s lucky. She has a very loving, concerned, caring family to look out for her. Many elderly people don’t.
I want to protect them all, but I can’t. Society as a whole can. So, let’s be selfish and demand better care for the elderly. Let’s kick these private care companies in to touch who pay rubbish wages to carers but demand all sorts from them. After all, if you’re not struck by lightning or a bus or something, you too will live to be a ripe old age.
Do you REALLY want a rushed 15 minute visit, conducted by a harried carer? Do you want your needs exploited, without actually having them met? If you don’t, then neither does anyone else.

Bit of a rant there towards the end, which I was going to redact but obviously didn’t. Sod it! Why shouldn’t I get political once in a while?
I actually used some of the above in an email I sent to my parents MP, the dreaded Esther McVey (nick-named locally Fester McVile, a genuinely rubbish MP in my, and many others, considered opinion) which I sent just a few days later after sending it to CUK. The reply I received back was nothing more than the usual DWP self-congratulatory gobbledegook.

Anyway, no mention above of the Amyes nutritional milkshakes for the very good reason that I’d yet to even hear of them let alone try them out. If nothing else, do give them a go; they taste fantastic: Sweet but not sickly sweet, and not a trace of sliminess or yucky aftertaste.

Two other things I discovered, and used successfully, after writing the above are as follows:

1a) Serve your mum’s food in/on a bright blue bowl/plate. I read about experiments conducted on dementia patients trying to increase their appetites. They tried all sorts of coloured crockery, and bright blue was the most successful, increasing appetites by an average of 25%
I thought this was worth giving a go, so hit the charity shops… again!
It worked; mum definitely ate more than usual when I served her grub on the plain, bright blue crockery.
Nobody knows why this is the case. Many think it’s a perception thing. There’s very little bright blue food around, so maybe the contrast between say mash, sausage and peas/beans on a bright blue background makes the food stand out more, easier to see and therefore easier to actually eat. Who knows? But it worked for my mum. Maybe it would to for yours?

2a) This one worked brilliantly, and was Jenny Lucas’s suggestion. I was at a point of despair getting mum to eat, despite all my tricks. Mum had gone off the fruit/nuts/seeds/cubes of chedder she’d previously loved so much as snacks I’d put on a small table next to her armchair for her to help herself as and when.
Jenny suggested buying kids’ stuff for lunch boxes. Things like little pots of jelly and fruit, dinky yoghurts, cheese dunkers, weeny biscuits/choc bars, that kind of thing.
Mum took to these kiddy snacks like a duck to water. Their size didn’t intimidate her, plus her severely arthritic hands/fingers could handle their size too. A winner all round. She’d also developed quite a sweet tooth by now (but not for the dreaded Ensures) which brings me nicely to my final suggestion.

3a) Don’t get too hung on nutrition like I did initially. When people lose their appetite their stomachs physically shrink. Therefore, ANY solidish food going into their stomachs is a good thing regardless of its nutritional content.
So if your mum will eat nothing but white chocolate buttons and Jaffa cakes, so be it. My mum actually developed a fetish for those two items for a while, and that’s what she got. Besides, at her age she was on borrowed time anyway, so she might as well enjoy eating what she wanted and if that contradicted the text books, then sod the text books!

Hope all of the above helps. Good luck with it all.

Sajehar X
Sajehar, you are a treasure!
Thank you Sajehar, I have printed that off and keep it by the cooker to read again when I'm feeling desperate. There are a lot of ideas to try and I'm very grateful.
It occurs to me that members of this forum could get together and pool their knowledge into a textbook on care of the demented!
I agree about Fortisip's gloopy consistency and sweetness and marvel at why GPs prescribe them to all and sundry, and why they are still in business. I can remember by gran having them 40 years ago (well NOT having them actually because she spat them out too.) I did try making some into ice cream but it froze solid so it had to be brought out of the freezer several hours before it could be eaten and went a bit gritty. It didn't taste bad - but you wouldn't want a lot of it, she did eat some.
Horrible as it sounds - do you ever think this loss of appetite might be natures way of ending it (animals often go off their food when they're dying don't they?) and that in a way we're being cruel and selfish keeping our loved ones alive, just because we can't bear to see them go.
All the same I just can't leave her to starve herself to death in her own filth.
PS got something for babies called bepanthen or something similar, though she doesn't seem to have nappy rash - she refuses to let me use it but will sometimes dab a bit on by herself (you know - with a sigh - 'if you SAY so!') but she's too weak to lift her bum off the bed so G knows what state she's in underneath. The carers are supposed to look after that side of things, but I doubt if they do although they do roll her over onto her bad hip to check for bedsores, and the same for changing sheets etc.
ExD, it IS nature's way. Google "Signs of Dying" and there is a good explanation of why a person may refuse food and drink.