Mum, 97, in palliative care.

[Marcelle123]

I have (almost) stopped feeling guilty about tiring Mum on her birthday, but I am so worried about Mum in hospital. I am starting this thread so I can say what's happening to her, as it is so helpful to me to hear of others' experiences.

Mum was taken in on Wednesday - today's Saturday - and as she lay in the ambulance, she looked deathly. She had a high temperature and pulse, her face was pale and sunken, and she was extremely weak. Once she was in hospital, on fluids and an oxygen mask, her colour improved. The next day - Thursday - I was told that a chest x-ray showed pneumonia and she'd also had fluid retention so they'd catheterised her. The urine was very dark, which seemed to indicate an infection. She's also had two loose bowel movements in hospital.

She slept through, the night she came into hospital, so for most of Thursday, she was not too bad. She was awake, and though she was confused, her dementia was only a bit worse than usual. Because they'd thought that aspiration of food or drink might have caused the pneumonia, she was 'nil by mouth'. I felt a little reassured that things would be okay.

 

[Marcelle123]

Yesterday, though, she was worse, though not quite back to the way she was on being admitted to hospital. Her colour wasn't very good and she just slept all day and was very confused. She didn't recognise me at first, which is rare for her. The speech therapist found - rather to our surprise - that she did have a problem with swallowing, so she is now on the thickened liquids diet but she is not interested in eating or drinking and has only had a couple of spoonfuls of yoghurt.

She has been moved to a different ward, as the EADU is only for initial assessment. However, I've been told that I can visit in the morning if I want - I wouldn't stay too long.

I've told the hospital to contact me at once if there's any danger of Mum dying. So far they haven't given me the impression that it's the end, but then they are bound to stay professionally upbeat.

I feel very lonely, being the only one of Mum's six children who lives nearby. I have power of attorney for finances (the old epa) but not for health. The County Council Social Services Department took on guardianship for Mum's health last year when we moved her from hospital to a care home.

One of my brothers will be coming up on Monday, so that's some relief, but I have learned so much from people on Talking Point about what to expect and how to cope.

I so want Mum to recover and have a bit of time left at her lovely care home, where she's known and looked after and has settled in. But if she doesn't die, her medical needs might be greater and necessitate a nursing home. I mustn't look too far ahead, though...

It has done me good to be able to offload my feelings. I feel on the verge of tears the whole time. I am managing to sleep because I know Mum's in safe hands and I also know that I have to get some rest and stay well or I won't be any use to her.

If you have read so far, thank you.

Thank you in advance for any replies.

 

[MaryH]

Dad had a staph infection while he was on ng tube (through nose) at the hospital and he was burning up and not responsive for about 3-4 days. They were thinking of a PEG tube (through stomach) and the specialist in that area said dad was not a candidate since he kept pulling out the ng tube.

The only way to be sure if he had an infection is via tests and dad's urine was dark but due to low level of liquid (IV) and the fact he had a high temperature so factor in some dyhydration.

Be vigilent but don't give up hope. Hope your Mom recovers soon since they seem to be rehydrating her and giving her antibiotics I think.

If your mom have trouble swallowing, the SLP for dad told me if dad is not swallowing properly, sometimes stroking under the chin and down the throat helps to trigger reflexive desire to swallow.

 

[LadyA]

@Marcelle123 I hope you can knock the guilt monster on the head! You are in no way responsible for the downturn in your mum's health. Her great age and her dementia, which is basically a degenerative illness, are.

I hope your mum can go back to her Care home, as you say, where she is known, and everything is familiar. I suppose a lot will depend now on whether she responds to antibiotics. I'm glad your brother is coming. It will be someone to share the burden with you.

 

[Prudence9]

Large, very supportive hug to you Marcelle, what a stressful time for you and yes, thank goodness your brother will be coming to share the all-consuming worry with you.

Don't forget to try the Admiral Nurse helpline if you feel you need extra support that the hospital may not be able to provide: 0800 888 6678

Will be thinking about you and with everything crossed for your Mum xxx

 

[Marcelle123]

Thank you very much, MaryH, Lady A, and Prudence9.

I just popped in for ten minutes and Mum was dozing but smiled when she saw me and seems to know more about who she is and who her children are this morning. Of course, mornings are the best time, which is why I thought I'd get permission to see her briefly - this ward has regular visiting hours, 2.30-5.00 and 6.30-8.00. She liked a Get Well Soon Card from my sister that I took in, and was looking out of the window, saying happily, 'I can see Retford!' (Her home town - not where we live now. )

So I feel better about it all at the moment. As we all know, though, things can get worse during the day...

It's nice to have this place to talk. Thanks also for the Admiral Nurses number, Prudence.

 

[Beate]

Urgh, I hate regular visiting hours! They really should wave them for carers! Is there a dementia team you could talk to? You could ask whether your hospital supports John's Campaign, which is a campaign started by the writer Nicci Gerrard about flexible visiting times for carers: www.johnscampaign.org.uk

 

[Marcelle123]

Thanks very much, Beate - I didn't know, but I will ask about this.

 

[Beate]

Actually, you can search the participant's list here: http://johnscampaign.org.uk/#/participants

 

[Spamar]

Ask if you can visit at any time, or a specific time in the morning. When OH was in hospital with vascular problems, I visited when possible, but not necessarily at visiting times. Nobody batted an eyelid. On the whole, I think they were grateful, especially after I pointed out half drunk, cold tea/coffee, and pills not taken!!

 

[gene genie]

Big hugs, and don't feel guilty hope your mum improves and can enjoy a while longer. Good to hear you are getting some rest and you will be getting support from your family.
Take care x

 

[Marcelle123]

Thanks, everyone. It is so helpful to be in touch with you here.

Beate - it seems as if Mum's hospital is part of John's Campaign. That is useful to know, so the next time I'm asking consent to pop in during the morning (which is readily given) I will refer to it.

I went in to retrieve Mum's birthday cards from the care home before lunch, so I can take them in to show her this afternoon, if she is in the mood. I saw one of Mum's carers that I particularly like, and she was saying she thinks Mum will pull through. I so hope she's right!

Mum's only been there a year, but I've visited her so often there (and know the carers and residents in Mum's wing) that it even feels a bit like home to me!

 

[Marcelle123]

I was amazed this afternoon to find Mum sitting in an armchair with my niece's birthday present throw round her, but bare feet. (Her birthday bedsocks were on the cabinet.) I rang John & he went to the care home to fetch in Mum's birthday slippers.

Mum was tired and kept lolling her head to one side on a pillow, but she was well enough to be awkward and feisty - she hit me on the head when I moved her table to fit my chair in. Luckily I was wearing my fur hat!

She also asked why there wasn't food available, and why she couldn't go home, as there was nothing wrong with her! All good signs.

We went through a memory book of photos and she was fairly interested, though she did ask me several times who I was.

I met her nurse, who seems very nice, and when we went, after about forty minutes, I said Mum might want to go back to bed. So the signs are that Mum is getting better - the last time she was in hospital she was similarly quarrelsome. We'll go in again this evening, but stay only a short time if she's either asleep or on the warpath!

She has come off the drip but is still on a catheter. One of the thickened drinks was on her table - what my husband calls 'Slick & Easy'.

 

[Prudence9]

Oh she does sound a lot better

Great advice from Beate, I think visiting times should be cast aside for patients with dementia too, it's little but important slips, like your Mum having bare feet, that go unnoticed but that you will see and put right.

Must admit, when Mum's been in hospital I've always been allowed on to the wards at any time, but it obviously depends on how the ward is run. Here, they seem to appreciate the help, even though I am a control freak!!

I hope it won't be long before your Mum is back home, where she's obviously loved and you can relax and enjoy being with her again xxx

 

[MaNaAk]

Dear Marcelle,

I'm sending my best wishes to your mum.

MaNaAk

 

[Amy in the US]

All the best, Marcelle.

 

[jugglingmum]

My mum got pneumonia, about a year after diagnosis.

I too thought it was because she had done too much (xmas day visit to my house with kids which she had really enjoyed) but with hindsight she was likely to have got it anyway, but it took six months for me to realise. There was a nasty strain of pneumonia going round that year.

When I visited her in A & E she was quite with it and lucid. However the next couple of days she was quite poorly, I think as the infection took hold, but she then picked up quite rapidly, so I suspect the change is the infection being knocked on the head. I hope so.

Hope she continues to improve.

 

[Marcelle123]

My mum got pneumonia, about a year after diagnosis.

I too thought it was because she had done too much (xmas day visit to my house with kids which she had really enjoyed) but with hindsight she was likely to have got it anyway, but it took six months for me to realise. There was a nasty strain of pneumonia going round that year.

When I visited her in A & E she was quite with it and lucid. However the next couple of days she was quite poorly, I think as the infection took hold, but she then picked up quite rapidly, so I suspect the change is the infection being knocked on the head. I hope so.

Hope she continues to improve.

Thank you very much, juggling mum. That's what I like about this forum - I only know what I learn about from Mum's situation, so I never know how typical that experience is. But here I can put it into context.

I think Mum is improving - unfortunately, with my mother, it takes the form at first of making her a bit of a nuisance on a hospital ward.

When we got there she was still in her armchair. I said to a nursing aide that I was surprised, and they said they'd tried to get her back to bed but she refused to stand up for them, though she had done on being helped into the chair, with no trouble. They said they'd have another go later - I worked on persuading Mum - but though she wanted to lie down, when they came to help her again, she shouted out and claimed she couldn't stand up.

As soon as they'd gone, she said she wanted to go to bed. But they're working on time limitations so now they'll have to leave it to the night staff.

Mum kept telling us we had to 'take her out of here' and I kept explaining that we would as soon as she was well etc... She was obviously over-tired.

Still, it's much better than Wednesday or even yesterday, when she was lying prone with no interest in anything. After half an hour we beat a retreat, thinking she might drop off once we left and then give the night staff an easier time - I hope so, anyway..

 

[Marcelle123]

Diary of a Day:

Popped in to see Mum this morning - she was sitting up in bed with a feeder-cup of tea & looked fairly well. She was pleased to see me but said she didn't know why she was there and when could she get out. I spoke to Mum's nurse, and she said she thought Mum had had a reasonable night, and that Mum's mood wasn't too bad so far.

I had a good afternoon visit with Mum. She seemed in a better mood today and more like herself. She was in an armchair, wrapped in her beloved throw, with her red-slippered feet up. We looked at a guide book about York (my home town) together. She kept eyeing up the cabinet of the patient opposite. I finally realised it was because she could see some bottles of squash on it. So I rang my husband and he came in with a bottle of Ribena and a bottle of apple squash, and mixed some of the latter with the boring thickened water. Mum enjoyed it.

But it wasn't a good visit this evening - as soon as we got there, Mum announced that she'd soiled her bed, but then wouldn't let the nursing assistants see to it. They finally persevered after all sorts of shrieking out and nastiness from Mum, and then when they'd gone, Mum turned her guns on me.
Having learned from past experience that it's impossible to reason with her when she's so tired and angry, we kissed her & said we'd see her tomorrow. Still, two out of three visits isn't bad, and Mum is clearly getting better.

The nursing staff at our local hospital are saints on earth.

 

[Prudence9]

Good news that Mum's improving Marcelle, you did the right thing removing yourself from the scene of the crime!

Hope she (and you) has a settled night and you can see further improvement tomorrow.