Mum, 97, in palliative care.
- Thread starter Marcelle123
- Start date
Thank you, Amy - that's lovely to know.
My brother and his wife are up from London to visit. I took them in and we spoke to Mum's nurse. Mum is no longer on IV antibiotics and they're switching her to oral ones today - so it may not be long till she is discharged, maybe a few days, once she's been pronounced fit and they've sorted the catheter.
Mum isn't eating much on this horrible thickened diet, but was in fairly good spirits when we arrived - waving her hands about like a showgirl, saying 'You can see there's nothing wrong with me!'
I said, 'Mum, nothing wrong with your hands, true enough - but it's your chest that's the problem!'
Her face lit up when she saw my brother, but a little later she asked him if he was 'someone from America'.
Anyway, I've left them to it. After they've visited Mum this evening (they're staying in a local inn) they'll be coming to supper with us. It's nice to have someone in the family to share things with - but everyone on TC has been so supportive.
Anyone with experience of this horrible illness is my wider family. Thank you!
Oh, Marcelle, you do sound brighter today. I hope your mum enjoys seeing your brother (no matter who she thinks he might be) and that you do, as well!
I hope your mum can be discharged from hospital soon. No matter how good the care is, hospital is not the best place for someone with dementia!
I hope your mum can be discharged from hospital soon. No matter how good the care is, hospital is not the best place for someone with dementia!
Thank you - we had a good evening, and today they'll be doing (most of) the visiting.
I'm pleased Mum's getting better so well but a bit concerned about the thickened-liquid diet she's on, as she doesn't seem to be either eating or drinking very much, and now she's off the drip, I'm just wondering if it will lead to dehydration again.
Do any of you know what happens if the SaLT team recommend this - will Mum be on it for life or will she be allowed to go back on to ordinary food and drink? If she has to stay on it, even when back in the care home, it will seriously reduce her contentment and quality of life and even health - but I have no experience of it.
When I asked the nurse yesterday, she just hedged and said the SaLT team might be coming round again as and when Mum was pronounced fit for discharge.
I'm pleased Mum's getting better so well but a bit concerned about the thickened-liquid diet she's on, as she doesn't seem to be either eating or drinking very much, and now she's off the drip, I'm just wondering if it will lead to dehydration again.
Do any of you know what happens if the SaLT team recommend this - will Mum be on it for life or will she be allowed to go back on to ordinary food and drink? If she has to stay on it, even when back in the care home, it will seriously reduce her contentment and quality of life and even health - but I have no experience of it.
When I asked the nurse yesterday, she just hedged and said the SaLT team might be coming round again as and when Mum was pronounced fit for discharge.
I don't now the answer Marcelle, but your mum should have a full discharge meeting and you should be able to speak to the Salt team then if not before. Can you visit in the afternoons and ask the nurses to make sure the doctor speaks to you. It's something our local hospital s getting better at, so worth taking advantage if other commitments allow.
Thank you, nae sporran.
I will try hard to get some answers from the doctors before Mum is discharged.
How useful it is for me to be on TP, with my inexperience. I found this thread, which in one case suggests someone might get back on to a normal diet before leaving hospital. It seems that the thickened-fluid diet is part of 'late stage' dementia, which I'm not sure that my mother has reached. But I am learning all the time.
https://forum.alzheimers.org.uk/threads/oh-dear-aspiration-pneumonia.83673/
I will try hard to get some answers from the doctors before Mum is discharged.
How useful it is for me to be on TP, with my inexperience. I found this thread, which in one case suggests someone might get back on to a normal diet before leaving hospital. It seems that the thickened-fluid diet is part of 'late stage' dementia, which I'm not sure that my mother has reached. But I am learning all the time.
https://forum.alzheimers.org.uk/threads/oh-dear-aspiration-pneumonia.83673/
Hi Marcelle, it is good to hear your mum is improving.
As to fixed visitting hours, enquire at the hospital for a carer's pass. This exempts you from the restrictions and enables you to visit at any time. It is a matter of inidivual hospital policy, but most hospitals offer one. In any case, simply asking for permission with the Ward Sister can be enough. The only wards that strictly enforce visitting rules are ones like infection isolation, or a ward where patients with mental health issues find visitors disturbing.
It is also normal for wards to block access during the mid-day mealtimes.
When my mum was in hospital recently for surgery I was able to visit more or less at any time, I could have had but did not need a carers pass. Many hospitals allow a designated primary carer to come into hospital and do some forms of care, such as helping with washing, eating etc, basically anything non-medical.
As to fixed visitting hours, enquire at the hospital for a carer's pass. This exempts you from the restrictions and enables you to visit at any time. It is a matter of inidivual hospital policy, but most hospitals offer one. In any case, simply asking for permission with the Ward Sister can be enough. The only wards that strictly enforce visitting rules are ones like infection isolation, or a ward where patients with mental health issues find visitors disturbing.
It is also normal for wards to block access during the mid-day mealtimes.
When my mum was in hospital recently for surgery I was able to visit more or less at any time, I could have had but did not need a carers pass. Many hospitals allow a designated primary carer to come into hospital and do some forms of care, such as helping with washing, eating etc, basically anything non-medical.
Thank you very much. Mum may not be in hospital long enough for me to need one, but I shall look into this if she isn't discharged (as they say she will be) in the next few days.
How nice of you to ask, Prudence - you have been so supportive during this crisis. Thank you.
The answer is good news, and bad news.
Good news - Mum does seem as if she's getting better and they're talking of discharging her on Friday (see below).
Bad news - Mum isn't eating or drinking enough because of the wretched Thickened Fluids diet, and I can't help thinking that if this is to be her future way of life, she will be constantly ill through dehydration.
Today's visits: My brother rang me to say he & his wife were there an hour in the morning. The first half hour Mum was contented and chatting, but when the lunch came, the 'thickened fluids' diet, she wouldn't eat and got upset when my brother tried to get her to. At one point my brother tasted the pulverised dessert himself, and said it tasted terrible.
My brother said that a nurse told him they were going to do an ECG to check Mum's heart but if there were no problems they were thinking that she might be discharged before the weekend. This is good news - but my brother and I are very concerned about this 'thickened fluids' diet that she's on.
This afternoon I went in and Mum was tired and wanted to sleep so I sat and read beside her.
This evening John & I went in. Mum has a raised temperature, and is again reluctant to drink the thickened fluids. We talked to a doctor (not one who's treating Mum) who explained that generally patients with 'aspiration pneumonia' do continue on the thickened fluids diet, but I personally think that Mum will just not eat or drink properly and fall ill through dehydration if she has to live like this back at her care home.
I'm going to ring the ward clerk tomorrow to see if it's possible to talk to a doctor in detail about Mum's progress and prognosis. With a lot of coaxing, a nursing aide tonight got Mum to take five teaspoons of red fruity 'thickened fluid', but it really doesn't seem to be enough.
Mum tonight was cheerful but making no sense at all. She kept talking about a number of unrelated topics, making up nonsense words at times, and had obviously no idea about her true whereabouts and situation. I remember she was like that in hospital once last year, and was better the next day, so here's hoping.
Tomorrow is another day.
Here are a couple of links which seem to share my concerns about the thickened fluid diet and the dangers of dehydration.
http://www.geripal.org/2015/01/do-thickened-liquids-help-people-with-dysphagia.html
http://www.amyspeechlanguagetherapy.com/liquids.html
http://www.geripal.org/2015/01/do-thickened-liquids-help-people-with-dysphagia.html
http://www.amyspeechlanguagetherapy.com/liquids.html
And this link is also useful, about living with swallowing problems:
http://d4dementia.blogspot.co.uk/2012/09/hard-to-swallow.html
http://d4dementia.blogspot.co.uk/2012/09/hard-to-swallow.html
When you say "thickened foods" do you mean a pureed diet? My mother too, in hospital, was not keen on the food in mashed form in various colours on the plate. I bought a Nutribullet and blended bananas and custard for her which she enjoyed. My Mum had lost a lot of weight and had aspiration pneumonia so, sadly, she didn't last long after leaving hospital. I was given a leaflet by the SALT team on which foods she could have in processed form and the powder to put in drinks to thicken them. They told me incorrectly in hospital to just put a spoonful in a cup but the instructions on the powder were so many spoonsful per mg. so what they told me was way under.
I wished I had been given proper instructions as I was in a panic when she was discharged as to what I could give her. I couldn't see the SALT team personally although I kept asking. Make sure you are given proper instructions about what and how to feed her. Get a SALT referral as soon as she comes out of hospital.
There are lots of foods to avoid which I would have thought suitable, like ice cream and jelly. It all depends on whether they turn into liquids in the mouth or not.
I wished I had been given proper instructions as I was in a panic when she was discharged as to what I could give her. I couldn't see the SALT team personally although I kept asking. Make sure you are given proper instructions about what and how to feed her. Get a SALT referral as soon as she comes out of hospital.
There are lots of foods to avoid which I would have thought suitable, like ice cream and jelly. It all depends on whether they turn into liquids in the mouth or not.
Thank you for your post, nita.
The food is pureed, and the liquids all have a thickening powder stirred into them - even cups of tea - which makes them of a gluey or jelly-like consistency, so Mum doesn't really think of them as drinks. She is not allowed to have plain water or juice - it all has to have 'thick and easy' stirred into it. Sometimes the 'fluid' actually stiffens up when Mum doesn't drink it so in the end it becomes immovable and has to be spooned into her. She doesn't have any understanding of illness at all, and she was used in the care home to eating a normal diet, so she just can't cope with it.
However, I can see that if the medical authorities prescribe the 'thickened fluid' diet for fear of more aspiration pneumonia the carers at the care home can't be expected to go against that. I do think it would be a good idea to have a speech therapist look at Mum once she's back in the home - at present it seems doubtful that Mum will see the SaLT team again before leaving hospital. Maybe we might even have to 'go private' - I don't know - but I completely take your point that the details of this way of eating and drinking must be gone into carefully.
I didn't realise she was in a care home. Is it a nursing home? They should be very used to dealing with people with swallowing difficulties and feeding them. My Mum didn't seem to have a problem with the thickening powder in tea as she did drink it. Probably not so keen on plain water. How is she getting her medication - is it crushed into the mixture? By the way, is it safe to give her the drinks when the thickener has become stiff, perhaps you should find out. I don't think the nurses in the hospital where Mum was were very knowledgeable about dysphagia and she wasn't on an elderly ward. I look back and wonder if things could have been done better.
It isn't a nursing home, but they do have residents on the thickened fluid diet, as I was talking to a team leader, reporting back to her on the day Mum went into hospital. The team leader said she hated the thickened fluid diet and so did the people who were on it - but I expect they administer it correctly. They are good people. My worry is more that Mum will be upset and agitated about it - she is a very strong-willed person, particularly when it comes to food, and that will spoil her contentment as well as the dehydration putting her health at risk.
So far in hospital Mum seems to leave the thickened tea & just doesn't take to it at all. She does a little better with fruit 'drinks'. But she isn't drinking enough for someone of her size.
If you were looking after your Mum at home and having to administer this diet, no wonder you were worried. I would be too - it is a huge responsibility. Thank you for sharing your experience with me.
Best wishes,
Marcelle
So far in hospital Mum seems to leave the thickened tea & just doesn't take to it at all. She does a little better with fruit 'drinks'. But she isn't drinking enough for someone of her size.
If you were looking after your Mum at home and having to administer this diet, no wonder you were worried. I would be too - it is a huge responsibility. Thank you for sharing your experience with me.
Best wishes,
Marcelle
Hopefully, the care home will be able to adjust her diet to find things she particularly likes. I think mousses are allowed (perhaps she would prefer something sweet) or flavoured milky drinks? I have read on here that some people are on this type of thickened diet for a long time.
I can understand that you are very worried she will get dehydrated. I do hope she picks up once she is back in familiar surroundings.
I just rang up. Mum had a reasonable night, but didn't eat much breakfast and refused to take her tablets this morning.
I asked if it is possible to speak to a doctor treating Mum on the ward this afternoon. The ward clerk was sympathetic, so that's what I'll do. I need to ask questions and get reassurances from someone who knows, not just a passing nurse or nursing aide.
Mum's notes say that a discharge tomorrow - Friday - is on the cards but I have three concerns - her catheter (she wasn't on one before and isn't comfortable) - the thickened fluid diet which is causing her to refuse to eat and drink properly - and her mobility. After an incident on Saturday when she'd sat in an armchair all afternoon, but refused to stand up for the nursing aides who wanted to help her back to bed again, she is now on a 'hoist'.
All these items can be dealt with by carers at her care home, but it isn't a nursing home, and if Mum isn't co-operating, I can't help thinking the outcome for her life and health would be bleak if she's discharged under these circumstances.
I asked if it is possible to speak to a doctor treating Mum on the ward this afternoon. The ward clerk was sympathetic, so that's what I'll do. I need to ask questions and get reassurances from someone who knows, not just a passing nurse or nursing aide.
Mum's notes say that a discharge tomorrow - Friday - is on the cards but I have three concerns - her catheter (she wasn't on one before and isn't comfortable) - the thickened fluid diet which is causing her to refuse to eat and drink properly - and her mobility. After an incident on Saturday when she'd sat in an armchair all afternoon, but refused to stand up for the nursing aides who wanted to help her back to bed again, she is now on a 'hoist'.
All these items can be dealt with by carers at her care home, but it isn't a nursing home, and if Mum isn't co-operating, I can't help thinking the outcome for her life and health would be bleak if she's discharged under these circumstances.
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