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Is this the beginning of the end?

wobbly

Registered User
Feb 14, 2012
313
Mid Wales
sorry, meant to add I hope things get settled and Mum gets some peace :) its so bloomin hard, my brain is mush at the miment as I'm sure yours is?
 

Timeout

Registered User
Feb 10, 2012
204
Hi all, a little update, mum was admitted onto the ward tonight. She improved quite a bit after just one bag of saline solution and was able to keep her eyes open and smile. However, they can't really find much evidence of infection and her blood pressure remains low.
We have agreed a DNAR was to be signed and a ceiling of care where they will give 'gentle fluids' and see how she goes, if she doesn't improve then we will be looking at palliative care. She is still majorly sleepy, yawning a lot and opening her mouth up wide to bring in air in her sleep. Snoring, slightly agitated at times and is still bringing her arms up to catch 'something'. We are all prepared for the worst, all we can hope is that she is kept comfortable right until the end. Thanks for all your kind posts, means lot to know we are in people's thoughts x
 

fizzie

Registered User
Jul 20, 2011
2,730
Wishing her a peaceful night and you a gentle sleep xxxx Take care of yourself, times like this are hard but thoughts are with you all xxx
 

Shazedge

Registered User
Nov 11, 2015
27
Thinking of you and sending love. It's so hard and upsetting and I really hope your mum finds peace soon xxxx
 

Timeout

Registered User
Feb 10, 2012
204
Another update and things have improved. Mum is off the drip and managing to drink, she ate a little at lunch too. She is alert, far less sleepy and will react to our voices and smile. Medically the only thing now is her blood pressure, it's still low at around 95/45. All her other obs were normal.
Last night the doctor said her chest X-ray 'didn't look great but showed no sign of infection' and her kidney function was impaired but that could be due to the dehydration.

She will stay in hospital tomorrow but be moved to a general ward. Any ideas whether her blood pressure is dangerously low? Will they discharge her with it at that level? What does it mean that it's so low? Is she failing?
 

Timeout

Registered User
Feb 10, 2012
204
Thanks Nitram, that's reassuring. The key will be to her maintaining her hydration herself once she goes back to the care home. I can see this scenario replaying at some point :(
 

nitram

Registered User
Apr 6, 2011
19,936
North Manchester
"The key will be to her maintaining her hydration herself once she goes back to the care home."

See if they will maintain a fluid balance chart, pads can be weighed to assess output.
 

Timeout

Registered User
Feb 10, 2012
204
Well I'm pleased to report mum is being discharged from hospital today. The doctors have requested a meeting with us first though. Why would we need a meeting? Does anyone know? Also, is it worth asking now for another CHC assessment as mum is still self funding at present.
 

Timeout

Registered User
Feb 10, 2012
204
And the roller coaster keeps on going...mum is back on a drip as today she's not eaten and refused to drink more than a few sips too. It seems her blood pressure medication was putting strain on her kidneys so the doctors have withdrawn all her medication. Her blood pressure tablets, olanzapine, an antihistamine she was taking, aspirin. Everything.

We met with the doctor and he says that there will be no return to hospital in future if she can't sustain her fluid or food intake herself. He was very lovely and compassionate, he explained that there's no point in prolonging her life by admitting her, hydrating her over and over again. He will speak to the care home to ensure they are happy to see her through end of life if and when she gets dehydrated again.

She is being discharged back to the care home tomorrow so it's just a matter of waiting and seeing if she will manage to keep her fluids up.

It's crazy but today she's the most well looking and clear eyed that we've seen for a long time. We've had the most beautiful smiles from her and if we laugh, she laughs too. I left the hospital and just broke my heart. I know it's been coming, we are 9 years into the journey but it's still come too soon
 

nitram

Registered User
Apr 6, 2011
19,936
North Manchester
Sorry to hear of the downturn.

I know the nurse said (s)he was organising the just in case pack but in your position I would check that it is actually in the care home.

It may not be required but if it is and is not readily available the next week or so is not the best time to organise getting it in a hurry. It typically controls pain, breathing problems, agitation and nausea, any of which may or may not occur.
 

Timeout

Registered User
Feb 10, 2012
204
Thank you, I don't think it was ordered afterwards as when the doctor came she was admitted to hospital. I'm really hoping that now she's completeiy hydrated (she is looking better in the face than she has for months) she will manage to go along ok for a while.

A horrible question to ask but If she doesn't drink much from tomorrow when she's taken back to the care home how quickly can dehydration start again? Days or weeks?
 

CeliaThePoet

Registered User
Dec 7, 2013
615
Buffalo, NY, USA
With no intake of fluids, I would estimate 1-8 days, gathering from various sources. It really is all about the balance of fluids in and out, though, and your mom's low kidney function might throw this. Her low blood pressure may also be a factor.
 

Timeout

Registered User
Feb 10, 2012
204
Posting another update, sorry if it's boring but it helps to write it all down to gather my thoughts.

Mum us still with us, of a sort. She's on an air mattress now as she was starting to show signs of pressure marking. She's awake, more awake than we've seen her for ages and I'm wondering if it's down to the withdrawal of all her medication including the olanzapine.

Whether she has more 'awareness' now I'm not sure but she seems angry now, she's not talking but the set of her face and the way she's avoiding eye contact tells me she's not happy. Gone are the sweet smiles and laughter. She's not eating but drinking thickened drinks. The nurses say she has constant diarrhoea. She's also lost 7kgs over the past 10 days.

This is a living hell for her and God forbid I'm starting to think it may have been kinder for her to have passed away last week. Because there was no DNAR on her CH file at the time the doctor sent her in for rehydration. At least now her CH plans have been updated and if she deteriorates again she can be allowed palliative care at the home.

She looks really well in the face now, wide awake and really alert. I feel sick at the thought we are going have to let her go through the long, drawn out process of dehydration again. I honestly pray for something to take her quickly and painlessly.
 

canary

Registered User
Feb 25, 2014
11,690
South coast
I hear you. It is so difficult.
In the severe stage you can sometimes lose the ability to smile and all you can do is grimace. This may be what is happening to your mum.
Im glad you have got the care plans updated now.
 

Onlyme

Registered User
Apr 5, 2010
4,995
UK
She may show signs of pain in her face. Please make sure that she is topped up with pain medication.

My thoughts are with you all at this time. I walked that path a few months ago and send you support for what is to come.
 

Timeout

Registered User
Feb 10, 2012
204
Thank you,as much as I don't want to lose her I'm also scared she could limp on in this living hell for months. My thoughts are all over the place. Xx
 

Ameliasmama

Registered User
Oct 24, 2015
44
My thoughts are with you Timeout, sounds as if your on a similar rollercoaster to us and I can relate to lots of your post. my Dad wasn't in a care home, a car accident hospitalised him 4 weeks ago but I think on a daily basis it would have been kinder for him to have gone then rather than this seemingly endless period of suffering he continues to go through.

Sending love and strength x


Sent from my iPad using Talking Point
 

jjude

Registered User
Jan 4, 2011
34
England
we are in exactly the same situation as yourself my dad was not eating or drinking and very difficult to rouse him. My mum called at the doctors and the receptionist told her she would call an ambulance which arrived ten minutes later. My dad was admitted five days ago and put on a saline drip. they have not managed to find out what infection he has just that his infection level was raised, whatever that means and have given him a drip of antibiotics daily. To be honest I am a bit lost as to what questions to ask the staff as I to am wondering if the end is coming but have no idea of the way forward. Thankyou for posting your experiences as I think I have a better idea of the questions to ask now as my mum wants no treatment for my dad so I suppose what I need to be asking is if this happens again what do we need to do to care for him and what stages will he go through assuming he comes home again. can somebody please tell me what is the " just in case" pack. I wish you well on your journey and the strength to do what is right for you and your loved one.