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Elderly parents

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PermanentTemporary · 25/01/2024 22:05

Firstly thickener.

There is no evidence of benefit to thickener, and significant evidence of harm from it.

If you challenge its use, you will find that the rationale slips away and changes. It will be said that it prevents aspiration (you can't tell that but it probably won't), and that it is 'safer' (it isn't at all, it can often be less safe, but who cares about 'safety' in this context?)

If you challenge those things, the next will be that it's more comfortable. That is sometimes (not always) true in terms of coughing, but there are often other ways round that, and people with dementia won't remember coughing or dread it or worry about it. It is much less comfortable in terms of how fluid feels in the mouth and how long it sits in the throat.

If you challenge that they will probably say it's the speech therapist's recommendations, which they must follow. True that it's the recommendations (though bear in mind that it's still the patient's choice, or the attorney's choice for them, or a decision in their best interests. One profession's advice is only one piece of advice).

If you go back to the speech therapist, talk about what they've seen and what makes them recommend these things. I hope you will be able to have a sensible discussion and get the recommendations changed. If not, ask for a best interests meeting including the GP.

Examples of possible alternative things a speech therapist might say: normal fluid at risk of aspiration, coughing and death; normal fluid from a teaspoon only at risk; water only at risk.

If anyone mentions 'feeding at risk' which they should, it's a good thing, ask them to write down what risks they are talking about. You cannot agree to at-risk feeding without knowing what risks you are accepting.

PermanentTemporary · 25/01/2024 22:39

And about giving food in these circumstances: why?

Again, a best interests meeting may help thrash things out.

Too often things get done a certain way to save the carers' or families feelings. That may align with the person's best interests or it may not.

Horsemad · 25/01/2024 22:48

We were very lucky in my Mum's care home that when she started refusing food they didn't go ott with trying to get her to eat.

They recorded everything she ate & mentioned whether she ate 'well' or not but I felt they were listening to us when we said it's her body starting to shut down & they didn't force her.

MereDintofPandiculation · 26/01/2024 09:33

SeriouslyAgain · 25/01/2024 10:58

@Valleyofthedollymix
There's a 'Letter of wishes' which the solicitor drafted at the meeting where we also sorted Power of Attorney for Health and Welfare.
It's not in any particular format, just a list of paragraphs, saying (possibly quite unhelpful!!) things like 'I want to stay in my own home irrespective of cost, but if I have to move into a home I want an ensuite room' 🙄😂.
But other bits have been useful: I can prove that I'm following her wishes by refusing to let her be taken into hospital. + if there was any debate ever over tube-feeding, I've got that covered.
She's also stated that at all points she was quality over quantity of life, but that doesn't really help in this situation where she's taking a very long time dying without anything 'acute' wrong.

I can confirm that our nursing home took the Letter of Wishes quite seriously. We did override his desire to not be on the ground floor, because he wouldn’t have had free access to the lounges there - it wasn’t that he wanted to sit in them, but he wanted to walk along to them and back, and he also liked to walk along and chat to the manager. But everything else is adhered to.

MereDintofPandiculation · 26/01/2024 09:37

StiffyByngsDogBartholomew · 25/01/2024 16:38

My mum kept a little pink skirt suit that my granny wore on special occasions. It's the tiniest thing, as was she (less that 5' tall) and will never be worn again. It's even got her hanky and fishermen's friends in the pocket still. She died 30 years ago. But when mum is gone, I will keep it just as she did before me. Clothes are a powerful token of a person, so many memories attached, especially to special occasion clothes,

My mum kept a scrapbook with a square of cloth from all her clothes. A more compact way of keeping the memories.

popularinthe80s · 26/01/2024 13:26

@SeriouslyAgain and @AgitatedGoose how terrible to have to witness that. So dehumanising.
@PermanentTemporary do you see situations like this frequently in your practice?
@AInightingale I'm smiling at your dad's sweets.

StiffyByngsDogBartholomew · 26/01/2024 17:46

OH MY ACTUAL GOD

my parents are not coming for lunch on Sunday ! I have a weekend off ! A whole one ! Although my automatic thought was, maybe we can go to Eastbourne abd pop in on the way back. I have quashed it.

im going to enjoy the first Sunday at home alone with my daughter with nowhere to go that I have had in about 3 years. I shall cook roast lamb for when Dh gets in from work at 5 and spend the rest of the day playing music with Dd (we have the local music and dance festival in March and always enter the family music). This year we're going to do something totally different and play Taylor Swift and ABBA

OP posts:
SeriouslyAgain · 26/01/2024 17:48

Hurrah!!!! Enjoy it!

AgitatedGoose · 26/01/2024 20:21

PermanentTemporary · 25/01/2024 22:05

Firstly thickener.

There is no evidence of benefit to thickener, and significant evidence of harm from it.

If you challenge its use, you will find that the rationale slips away and changes. It will be said that it prevents aspiration (you can't tell that but it probably won't), and that it is 'safer' (it isn't at all, it can often be less safe, but who cares about 'safety' in this context?)

If you challenge those things, the next will be that it's more comfortable. That is sometimes (not always) true in terms of coughing, but there are often other ways round that, and people with dementia won't remember coughing or dread it or worry about it. It is much less comfortable in terms of how fluid feels in the mouth and how long it sits in the throat.

If you challenge that they will probably say it's the speech therapist's recommendations, which they must follow. True that it's the recommendations (though bear in mind that it's still the patient's choice, or the attorney's choice for them, or a decision in their best interests. One profession's advice is only one piece of advice).

If you go back to the speech therapist, talk about what they've seen and what makes them recommend these things. I hope you will be able to have a sensible discussion and get the recommendations changed. If not, ask for a best interests meeting including the GP.

Examples of possible alternative things a speech therapist might say: normal fluid at risk of aspiration, coughing and death; normal fluid from a teaspoon only at risk; water only at risk.

If anyone mentions 'feeding at risk' which they should, it's a good thing, ask them to write down what risks they are talking about. You cannot agree to at-risk feeding without knowing what risks you are accepting.

Many thanks and massive appreciation for taking the time to write this. I'm really unclear why my Mum is being fed pureed food and thickened fluids. The CHC assessment refers to lack of dentition but she has all or most of her teeth. There's a mention of previous swallowing difficulties whilst in hospital although I suspect this was due to not wanting to eat or disliking the food. I gave Mum a drink from a normal glass when she was in hospital a few months ago with no difficulties. She's not had a referral to SALT.
I suspect that the thickened fluids have been instigated by the home and I'd imagine it's a lot easier to get pureed foods into someones mouth if you're trying to coerce them to eat.

StiffyByngsDogBartholomew · 26/01/2024 20:50

@AgitatedGoose i have no practical suggestions as thank goodness it's not got that bad here yet but that sounds so awful. You feel so powerless in the face of the medical profession and care homes. I'm so sorry, it must be heartbreaking

OP posts:
PermanentTemporary · 26/01/2024 22:15

@AgitatedGoose I'm almost relieved to hear it's not a speechie that's recommended thickener. But I'm also really sad that someone has put that in place without advice.

You can absolutely challenge it. They will probably say they want to wait for a SALT review. If you want to be That Relative, you could ask them why they felt able to start thickener without a speech review, but aren't able to stop it without.

Whether you are nice or nasty, Google the local community speech therapy team and see if you can get your views across aboit your relatives priorities and best interests to the team before the assessment happens.

Now, there is one reason why thickener can sometimes help. Some people don't react to thin liquid in the mouth and only react to heavier fluids. But again, there are other things to try if that's the case - and often it's temporary.

Puree is slightly different in my view. It is really common particularly with dementia to reach a point where any texture in the food just doesn't get swallowed but sits in the mouth. And many people would choose to avoid actually choking on a big lump of meat or something. But again, a SALT review might help get some more options.

Choux · 27/01/2024 12:00

You can absolutely challenge it. They will probably say they want to wait for a SALT review. If you want to be That Relative, you could ask them why they felt able to start thickener without a speech review, but aren't able to stop it without.

@AgitatedGoose you can ask that question in a calm manner and with a smile and see what response you get. Care homes should be acting in the best interests of their resident but that doesn't mean independently taking action to make the carer's life easier or to prolong the resident's poor quality of life when the family are not necessarily supportive of that.

I can imagine being in a similar situation to you in the future. My mum - dementia and no teeth - is already on liquid medications. Apparently when she was taking tablets, if they didn't wash down her throat with the water, she would then pick them out of her mouth as she didn't realise it was a tablet and try again. I never saw it myself so can't say if the switch was purely for her benefit or to make the carer's job easier. Or a bit of both. She still eats biscuits, sweets and regular but soft food fine but at some point I imagine they will want you to move her to purées. If at some point mum can't chew or swallow - a basic human impulse - then to me that is a sign she should not have any more life prolonging treatments like antibiotics. Mum would not want it if she could speak for herself.

Saz12 · 28/01/2024 12:31

DF has been in care home for 7 years. She has had several health crises, but each time has rallied - endless uti and one incidence of sepsis - taken to hospital and treated successfully.

Has been pretty much paralysed from chest down for last 2 or 3 years.

Ive had a "discussion" with care home refusing antibiotics on her behalf. Now has no sign of infection, but refusing food and water - well, not conscious enough to swallow at least. Been 2 days with nothing at all, before that they were syringing in thickened fluids with minimal success. I feel I'm fortunate in that as awful as it has been, I think shes had the level of treatment that she wanted at each stage. Its not what I would choose, and not what shed have wanted 10 years ago.

Saz12 · 28/01/2024 13:05

I cant see how to edit my post, but on re:reading Ive not said quite what I meant!

I'm currently sat with her, watching her die. Day 3. Im relieved the care home arent insisting on treatment, and glad the syringed fluids stopped when I asked. I think. But I keep convincing myself that this will be another near-miss - awake a lot, though not responding; started to swallow again; breathing has become more regular.

TheShellBeach · 28/01/2024 14:21

@Saz12 I'm sorry your mum is nearing the end now.

Flowers
TheShellBeach · 02/02/2024 13:40

How are you @Saz12

And everyone else? @JellyWellyBoots how are things with you?

TheShellBeach · 02/02/2024 13:41

@Metoo15 Has your mum settled down?

Saz12 · 02/02/2024 14:59

@TheShellBeach , she passed away Thursday. Thank you for your good wishes.

TheShellBeach · 02/02/2024 15:23

Saz12 · 02/02/2024 14:59

@TheShellBeach , she passed away Thursday. Thank you for your good wishes.

I'm so sorry.
Flowers

moggerhanger · 02/02/2024 15:49

Sorry to hear that @Saz12

Metoo15 · 02/02/2024 16:36

So sorry Saz12 hope you’re doing okay.
Mum has good and bad days ShellBeach. I never know which mum I’ll get the pussycat or the anxious and depressed one. We’re about half through clearing her flat, I keep taking her bits and pieces from the flat but I don’t think it helps. How are you ?

Valleyofthedollymix · 02/02/2024 16:41

Really sorry @Saz12 - I hope you can find a way through all the emotional and practical baggage this brings. Well done in helping her to be allowed to die.

Tara336 · 02/02/2024 18:07

I did a visit to the home today DF very with it. Apparently Drs dont know what they are talking about, are keeping him there for the money and not because he's ill and I should write to his MP to get him out. He has also asked DD if he can live with her and told me I should arrange for him to be released and I can care for him. Like he'll I will!

AgitatedGoose · 02/02/2024 19:25

Sorry to hear about your Mum @Saz12 . I hope her passing was peaceful and I’m glad the home didn’t insist on continuing with fluids or admitting her to
hospital. Wishing you strength in the days/weeks/months ahead.

MereDintofPandiculation · 02/02/2024 19:30

Sorry @Saz12 Flowers

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