Is it the end?

[hcginger]

Hello All

It has been really helpful to read some of the posts on here, as I find this subject so confusing, there never seems to be a solid answer to any questions!!

My great auntie is 93 and 3 weeks ago yesterday she had a small stroke and was admitted to hospital, within 3 days in hospital she also had a heart attack and the doctors told us she was dying and was on palliative care. As the days past she got better somehow and was talking normally and knew who we all were, although was asking questions of who out of her brothers and sisters had died so was a bit confused but nothing major for a lady of her age and the doctors said she was improving and was no longer on palliative care.

I went to see her in hospital on Tuesday of last week she was asking me about my wedding and although confused one min talking normally then the next asking where she was and why she was there she seemed to be 'normal' in herself! I then went to see her on Friday and she physically looked dramatically different, she is refusing food and drinks, she can’t be more than 6 stone now! She was shouting at me and the nurses it was awful and shocking for me to see her like that. The nurse took me into the family room and said she has very advanced dementia, they had mentioned it previously saying due to her age there are signs of dementia now within a week it is advanced! She also has serious heart failure and obviously cannot go on forever but to see her deteriorate so rapidly (3 weeks ago I visited her at her home where she still did everything for herself and she was fine!). Has anyone else experienced anything like this or this quick? And like other people have asked how long can she go on for?? It’s so awful to see her like this.

Any advice or similar stories would be helpful to read.

Thanks xx

 

[Butter]

Welcome to TP hcginger. It is sad to learn about your great auntie. It must be a shock to see such a quick deterioration. But I am pleased to hear she was living as she would wish until three weeks ago.

You are right there do not seem to be any solid answers. I can only tell you what I know to the best of my knowledge.

Sometimes when we go on palliative care we do improve for a while: if we become calmer and more comfortable we can gather our thoughts again.

Then it is not unusual to refuse all food and drink. We sometimes decide that is what we want to do: we are tired and it is the only thing left we can decide for ourselves.

I asked my mother's carehome manager how long she might survive without food and drink. He said he had had residents die within 24 hours and within 22 days.

It is good you are visiting. Don't be afraid to ask for your great auntie to have all available palliative care - so she is kept comfortable and peaceful. There should be no need for her to be distressed at all.

I wish you strength as it is a difficult and confusing time. Keep posting here if you wish - there are always people around.

 

[hcginger]

Thanks so much for your kind reply!

My mum has just called me after visiting my Auntie and she said she was different again today, very calm and just really tired, mum said she couldn’t keep her eyes open when she was trying to talk she was that tired. She said her voice was really weak too. The dietician said she is now fully refusing all food, although keeps asking for ice cream but then won’t eat it as its too cold! My auntie said to the dietician that she was tired so was going to close her eyes and hoped the angels would come for her! I feel awful saying it but I hope they do come for her soon!

The nurse asked my mum to take her outside in the wheel chair as he said there is nothing wrong with her – my mum actually said to him ‘nothing wrong with her are you joking, you wouldn’t leave a dog to get into this state’ which is ignored!

Every day I wake up thinking today will be the day she will go but she is still hanging on, to hear her saying she hopes the angels come though maybe means she is letting go a bit and isn’t fighting it anymore? I guess time will tell but I don't like the thought of her suffering anymore!

Also they mentioned about moving her to a unit for people with dementia who are not fit to go into a home but I am not sure if that is attached to the hospital or not? any ideas?

xxx

 

[2jays]

My first thought was has she got an infection that they are not bothering to treat. Infections can change a person dramatically.

As to the care home issue. Don't agree anything until you have spoken to someone who knows what questions to ask ie someone from the Alzheimer's support group

0300 222 1122 is the number to call to get a local information.

 

[Mamsgirl]

Hi,
Nothing to add, just dropped by to say I'm thinking of you and your great-aunt,
Toni x

 

[Pigeon11]

Nothing to add from me either but just wanted to send you good wishes and to let you know i'm thinking of you. Take care. x

 

[hcginger]

I have just called the hospital to see how she is today – up, dressed, sat in the chair and very vocal he said!! I asked if she had eaten anything and he said no not really but the dietician is aware of this so she is on the right supplements!! This is awful - I just feel like they are dragging this out for her and she could go on for months and months miserable, confused and wanting to die and we will have to watch her get worse and worse!

It just seems so unfair – I know they can’t not treat her but it just seem stupid to me, not only is she suffering but we are suffering watching it and all they say on the news is about how the NHS is being drained of all the money but then you see them doing things like this and I wonder how many other thousands of people are in the same situation being treated when really there is no point, she won’t get better we have been told this and she is 93!!! It’s just cruel!

I am not sure what to do next really, can I do anything or have I just got to wait and watch her waste away?

xx

 

[Pigeon11]

HCGinger I absolutely know how you feel. It's hard to admit it and I don't have the answer to any of this but I do know what you mean about things being dragged out.

My Dad's only 78 and not at that stage where he's stopped eating but he hasn't any remaining functions to lose and is in a sort of 'alive but not really living' state - and has been for longer than I care to remember - years not months.

On the one hand you are frustrated that something should be done to stop it all and then on the other you know that there are no options - and even if there were, would anyone take them?

In terms of what can you do, I don't have any ideas except that we have to accept that nature will take it's course and sometimes not in the way we would wish for those we love. I can't offer you anything but sympathy, but really hope this helps in some way.

best wishes xx

 

[hcginger]

Thanks so much for all your replies!

2jays looks like you might be right, the hospital have just called to say they think she has an infection, they are not sure where but are doing a chest x-ray now but 'not to worry she is OK'!?

As you said Pigeon11 I just need to accept that nature will takes its course and I am trying to do that for my own sanity but I find it all so frustrating!

Again thanks for your replies it helps to speak to people on here!

xx

 

[lilysmybabypup]

It is such a roller coaster, isn't it? It's quite normal to feel conflicted, wanting them to stay, and wanting a release. It's the time to let your great aunt set the pace, and it's hard to watch. She may have good days and bad days, days when she rallies, and days of sleeping or asking for release. Just try to to spend each time just "being", holding hands, talking together if she can, speaking in a soft soothing tone if she's asleep.
I wish you peace and comfort, and much strength.
Stephanie, xxx

 

[frustrated1962]

Hi hcginger
I have read your post and I'm so sorry that your Great Aunt has deteriorated so quickly.
A friend of mines Mum went the same way, up until March/April this year she was still living at home (with carer's going in as well as going to daycare 3 days a week) She was prone to having falls so did a stint in hospital as well as being admitted for a water infection as well. Then the LA decided it was no longer possible for her to stay at home anymore so then my friends Mum went into a CH, well she was in the Home 6 days and fell twice, so then it was back to hospital where she also had a heart attack, I couldn't believe it when I got a text to say she wasn't expected to last the night, couldn't believe how fast she had gone.
Just to say my heart goes out to you and your family.

 

[Mamsgirl]

I have just called the hospital to see how she is today – up, dressed, sat in the chair and very vocal he said!! I asked if she had eaten anything and he said no not really but the dietician is aware of this so she is on the right supplements!! This is awful - I just feel like they are dragging this out for her and she could go on for months and months miserable, confused and wanting to die and we will have to watch her get worse and worse!

It just seems so unfair – I know they can’t not treat her but it just seem stupid to me, not only is she suffering but we are suffering watching it and all they say on the news is about how the NHS is being drained of all the money but then you see them doing things like this and I wonder how many other thousands of people are in the same situation being treated when really there is no point, she won’t get better we have been told this and she is 93!!! It’s just cruel!

I am not sure what to do next really, can I do anything or have I just got to wait and watch her waste away?

xx

Are you sure she's being actively treated?

I don't really understand why palliative care was withdrawn if your poor great-aunt doesn't wish to continue and doctors have informed family she can't be cured. While from the hospital's viewpoint, it's assault to force your great-aunt to drink or eat, it's also neglect to stop offering sustenance until she makes it clear she won't accept it.

If your great-aunt is suffering physically and/or mentally the hospital is definitely obliged to address this, and perhaps if you see her experiencing less pain and angst your own distress will reduce. I hope so, you sound like a very caring great-neice.

Take care,
Toni x

 

[hcginger]

Yes she is being treated, they now have her on a drip for dehydration, she is on really strong antibiotics for an infection, water tablets to reduce the fluid in her lungs and legs (which seems to be working!) I am just so confused! It's like I have already grieved for her yet she is still here and seems to be getting better?!

My sister has just been to see her and she was awful to her, shouting at her and calling her evil, she kicked her and was screaming at her to take her home and saying pull this thing out of me (meaning her drip) the nurse said once the antibiotics kick in she should be ok after the weekend!? I just can't see that happening, we are getting such conflicting messages.

I think a few of us need to go together to see the doctor to get all the information as they tell us all different things each time we go!

I think I just need to take each day as it comes and just go with it now, I am going to drive myself mad otherwise!

Thanks for all your posts it's really helpful and reassuring to speak to people on here! I've been posting a lot today so sorry for the big out bursts from me!

Xx

 

[nicoise]

Dear Hcginger,

So sorry to hear about your great aunt; she has had a dreadful few weeks. In the space of 21 days she has had both a stroke and heart attack - amazingly neither of those events carried her off, and no wonder she is up and down as a result of both the event and whatever recovery she is making from them.

The hospital, rightly or wrongly, sounds as though they are doing their best for her, and treating her fairly aggressively. In light of all the disquiet about the now defunct Liverpool Care Pathway, I suspect there is a great effort to ensure that adequate treatment is offered, especially if there is no clear documented directive from the patient not to treat.

It can be incredible just how much of a difference even dehydration can make in a person. The hospital is duty bound to treat her - and indeed it seems their treatment is making a difference. It is when treatment is making no difference, or cannot make a difference, that it is stopped.

The stress on family members is very great - hearing the news, preparing for the worst, then an unexpected rally so hope rises again, and so on. It is very difficult to manage all those emotions and stresses.

One key aspect however, is that hopefully your family will not have any questions as to whether more could have been done for your great aunt, or that there was any sense of abandonment of her as an old lady with dementia who wasn't worth trying for.

Just taking each day as it comes is a good idea x

 

[Mamsgirl]

Nicoise:
I didn't know the LCP was abandoned!

It's a bit worrying to me that treatment can't be stopped if it's making a difference. Surely the recipient ought to be the one to decide what sort of difference treatment makes, and be kept comfortable should they choose to decine it. My reading of hcginger's post is that her aunt wishes to refuse IV hydration and antibiotics and is violently distressed at being treated against her will.

Hcginger:
I believe in the UK family can request something like a best interests meeting. Might be worth exploring.

Could you do some information gathering for your aunt's next of kin, perhaps condensed into point form to help the NOK navigate the conflicting information being given out?

So sorry for what you're all going through, especially your great-aunt. Hang in there ,
Toni x

 

[nicoise]

Nicoise:
I didn't know the LCP was abandoned!

It's a bit worrying to me that treatment can't be stopped if it's making a difference. Surely the recipient ought to be the one to decide what sort of difference treatment makes, and be kept comfortable should they choose to decine it. My reading of hcginger's post is that her aunt wishes to refuse IV hydration and antibiotics and is violently distressed at being treated against her will.

Hcginger:
I believe in the UK family can request something like a best interests meeting. Might be worth exploring.

Could you do some information gathering for your aunt's next of kin, perhaps condensed into point form to help the NOK navigate the conflicting information being given out?

So sorry for what you're all going through, especially your great-aunt. Hang in there ,
Toni x

Dear mamsgirl,

Sorry, I probably didn't phrase that very well; whilst palliative care is of course still in place, the LCP as it was raised so many concerns over inappropriate use and the public's lack of confidence in it that a review has recommended it be phased out. Certainly in a large hospital close to me they are no longer using it - or at least, end of life care under that title.

https://www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients