Constant complaint the food is terrible

[BeMintFatball]

My mother has been in nursing care home for exactly one week.
I chose the care home for its closeness to me and its luxurious feel. Fees are nearly £10k per month and that is not even for the most expensive room!
Mum has an aggressive brain tumour. In this first week most of the wider family have visited. I’m hoping they make their own minds up but all mum does is complain.

I was able to eat with mum the first day and the meals were a very high standard. We ate in the dining room no special treatment we had the same as the other residents.

In the space of this first week Mum has gone from counting down the minutes and eating every scrap of hospital food to lose
of appetite, doesn’t finish anything. And her speech has decline dramatically.

I feel so disheartened. I had hoped she would experience a little comfort in her final weeks but all she does is complain.
Praying I don’t get it in the neck from family when this is all over . I’m anticipating the what a shame your mum hated the care home.

My hands are tied. She can not live at home. She needs 2 carers and a Sara stedy for every transfer.

No point in this post other than to rant to people who might know how I’m feeling

Can you take her in some little treats to tempt her to eat. She may just not feel like eating or the illness could be affecting her sense of taste. You can only do your best.

It might be her illness making her not like the food. If you're worried about what others think, tell them what you've said about choosing the best place and her previously loving the food which you've tried yourself but her illness making her no longer enjoy it. Sorry you are going through this. Sounds like you're doing the best for your mum

If her speech and appetite have declined significantly, unfortunately that is likely to be progression of the tumour, I'm so sorry. Repetitive complaints could also be the same.

It's unusual for severe brain tumour patients to complain about food as the high doses of steroids generally make them ravenously hungry.

It's possible a review of her steroids may reverse this at least to some extent, for a bit longer.

I am so sorry you are both going through this.

The fact that her speech has declined dramatically suggests that not liking the food is actually not the main thing going on here. I know nothing about brain tumours, but I'm guessing that they can affect appetite and also taste. If she's not eating much, it may be more to do with the illness and less to do with the quality of the food (which you know yourself is very good). Or perhaps complaining about her environment is all that's left to her to 'control'?

You're doing your best OP and have clearly found her somewhere very nice. She probably doesn't want to be there and doesn't want to be ill, because who would? But don't feel bad - as you say she can't be at home - she's too unwell

If anyone says 'what a shame she didn't like the care home' say 'what a blessing that she had 24 hour care in the last phase of her life with all her needs met'.

It was a huge relief to me when my dad was in his care home not to be worrying that he'd fallen down stairs, fallen and couldn't get up, wasn't well, wasn't eating or able to get any food. The removal of that worry is priceless. The trade off is their reaction to the setting, which is very often negative even if the setting isn't at fault. But that's an unfixable problem. They want to be at home and they can't be (in some cases because they actually have an earlier home eg childhood home in mind). You can only do the best you can do. 💐

I'd take in something that would normally be a sure thing as food, like chocolate biscuits. My dad's eating patterns changed. He also complained about food, mainly because he couldn't remember what he'd had and saying he hadn't liked it became his default mode.

I’m so sorry to read this. I also feel it’s part of her condition. My aunt had the same illness and she said all sorts of things. My DM was in a care home and I could stay to have lunch with her. Can you do that @BeMintFatball? It’s ok to see what she’s given and make a judgement yourself.

As far as family go what have they contributed to her care previously or had input before they moan at you? They need to educate themselves about the condition before moaning at you.
I worked as a Marie Curie nurse and looked after several brain tumour residents. The change on personality can be rapid and they can become frustrated, irritable and sometimes aggressive. None of which is their fault. Food was often an issue too, "Trying to poison me," etc.
Treats are a good idea something nice might tempt her taste buds.

I agree it is probably part of her condition. Brain injuries/tumours can change your experience of both the taste and texture of food. It is a shame she can't enjoy her food any more but unfortunately it is probably due to the progression of her illness.

Is there anything she still enjoys, often sweet foods remain popular. If you can think of something she definitely used to enjoy you could take it in and see how she gets on with that (maybe some type of cake or dessert).

Please try to not to worry about others criticising the fact she's in a nursing home. You know you have done the right thing for her.

My gran changed so much at the end of her brain tumour. She went from a proper just make the most of it, never complain attitude to shouting abuse at people (never ever heard even a mild swear from her before), flipping food off the table if she didn't like it and aggressive. It's probably the tumour not her.

Maybe take in a few snacks you know she likes. It may just take her a bit of adjusting to.

And her speech has decline dramatically

Is she able to still chew and swallow her food safely, without choking, coughing etc? Can she still swallow thin fluids like tea/water without coughing? If her speech is suddenly so affected, I'd be very concerned that the tumour is affecting her swallow reflex. She might be eating much less due to difficulties swallowing, rather than the taste. Blaming the food is sometimes easier than admitting ones own fragility. Does she enjoy food brought in from outside? Is she dehydrated? Is her tongue dry?

IF she is struggling with food/drinks, staff can provide thickened fluids which can be easier to swallow. I'd also be asking for a staff member to support her eating when you aren't there and encourage fluids- especially in this heat.

I'm sorry. It can be so hard to see someone like this. Remember that its the tumour causing the changes and not her real self ❤️

That’s really unpleasant for you when you’re clearly acting in her own best medical interest to keep her safe, but I fear it’s not all that uncommon. My DF had a brain tumour and the personality change was huge - and distressing- towards the end. And my grandma whinged non-stop when she had to go into residential care in her last year, because her Alzheimer‘s meant she forgot she was constantly falling and leaving cookers on etc in her own home. It made a horrible situation all the more unbearable for the family.
If part of your current stress is the worry that more distant relatives will give you stick later, firstly, they clearly weren’t offering to take care of her either so their opinion is irrelevant - but you could also head off later whinges with a few messages eg to the family WhatsApp chat, pointing out that her complaints are due to her condition, and that she was moved solely to keep her safe at the end. If anyone is rude enough to criticize you, affect faux bafflement and say ‘So you’d have preferred her not to get the best care possible, which I chose on medical advice?’ People can be incredible hypocrites about this kind of thing. You’ve done the right thing.

My gran in a home went off all savory foods and existed on really brown bananas, crumble,and sweet foods. She loved things like trifle and chocolate mousse. My mum took around a carrier bag of food at the weekends.
I think it was a combination of her taste buds degrading and also sore gums ( she was in her late eighties). She had mild dementia and over a few years ate less and less and faded away really til an infection took her.

I am so sorry OP, I too have had the crushing disappointment when DPs finally agreed to go into a care home of DM moaning and groaning about the perfectly acceptable care. I think it’s just getting used to not being at home and able to control what they eat.

DM has always eaten very scantly but has recently developed a real sweet tooth. She is gluten free and I have noticed that the coconut crumbles I bring in for her seem to disappear very fast. So I would try bringing in sweet things see if she likes those.

As for relatives finding fault, you are doing the absolute best you can. Ask them what they would do differently if they say anything directly. Actually don’t just murmur something about having tasted the food yourself and it was good and just move on.Hopefully they won’t as they can see the situation.

Huge sympathies, OP - it’s so hard.

TBH we left it rather late to move my DM (dementia) to a care home - she simply wasn’t safe to be left alone at all any more. But of course she had absolutely no insight into her condition - in her head she was fine! - couldn’t remember that she could no longer even make herself a cup of tea, and TBH I was terrified about her starting a fire (there had already been a small one in the kitchen) since she was forever locking doors and hiding the keys (and forgetting where she’d put them) - she’d never have been able to get out.

But for quite a while in the CH (a lovely and v good one, purpose- built for dementia) it was a long litany of ‘Get me out of here! Have you come to take me home?’ - etc., so stressful, now and then I’d chicken out of visiting. She was always a pessimistic type anyway.

Sad to say, it wasn’t until her dementia was even more advanced - and she’d stopped recognising me - that visits became so much easier.

I do feel for you. I have spent weeks of my life dreading what the aunts, uncles and cousins would say about my mum’s care, and as a health professional I have heard some comments made. So I’m not going to say that you’re unlikely to hear anything. But the truth is your mother is very unwell and all her perceptions are being altered. You have found her what sounds like the best possible care but she isn’t going to be living her best life right now. I agree with the ‘what a blessing’ response above, or if you want to express some of the pain, you can say how much you hope they will never face such an agonising choice. But really, they will just be saying things without thinking, people do. 💐

Did they reduce her steroid dose just before discharge? If massive decline in her speech might be worth speaking to her pall care team or GP about putting it back up. Sadly that will only be a temporary fix but if it means she can communicate with you more easily, it might be worth doing.

@MycactusandI yes! Steroids completely withdrawn about a week before discharge. Meaning she is now 2 weeks without steroids.

She only has one working hand. If I’m not there to feed her then a carer helps her.
Popped in on her this morning. Flying visit didn’t give her enough time to complain about much. I genuinely think she enjoyed yesterday. I went with my eldest daughter and we found Mum listening to a concert. Live singer sung some of her old favourites.

MIL was in a home for the last year of her life. It was a good one and it was the right place for her, while she had most of her marbles she was very infirm and frail.

She was however NOT HAPPY with the food. It wasn’t bad but it was institutional. She’d been living on ready meals, cup of soup and cheese so it was an improvement. However it was very expensive and not to the same standard as the very nice gastro pubs she was taken to most weeks. I took the view that she could have her moan… she was usually distracted by a care home provided Kit Kat.

Needs urgent review by GP/Palliative Care and reinstatement of steroids.

I see this all the time, no idea why they get reduced to zero as obviously the symptoms will come straight back without them.