Hate seeing her like this..end of life care

[Crazyladee]

I don't know why I am posting this.. Just need to get my thoughts written down I suppose.

My Nan is 96 years old and for about 8 years been struggling with dementia. She's always been a very strong fit and healthy woman. I've been very, very close to her all my life and for many years been closer to her than my own mum.

Anyway, fast forward to last Wednesday. She was admitted to hospital after the care home noticing a decline in her health.. Refusing to eat, not wanting to get out of bed. Blood tests showed her kidneys had failed and she has an infection in her blood. The doctors told us on Wednesday morning that she has hours, not days to live.

She was placed in a private room on a ward and we were told that the life supporting machines (drip, oxygen, heart monitors, blood pressure checks) were going to be taken away from her as there's nothing they can do for her and it is just prolonging the inevitable.

So all they are doing for her is turning her every few hours.

That was last Wednesday. We are a very small family, but the family that we do have, have all visited to say their goodbyes.

Between me and my dad we have been taking it in turns to stay with her. There is a small camp bed in the room and my dad has been staying overnight and I have been going every morning to let my dad go home for a few hours.

Now it's Sunday night and she is still with us despite the doctors predicting she had hours to live on Wednesday. Because she has has no fluids, no drip since Wednesday, she is, hour by hour looking terrible. She is basically shrivelling up, her skin, eyes and mouth is so dry. Her tongue is almost reptile like. She is babbling away in an unrecognisable hoarse voice so you can't make out what she is saying apart from "help me" it's absolutely gut wrenching seeing her like this. They've given us little sponges to squeeze water around her lips but she seems hyper sensitive to touch and doesn't seem to want any drops of water around her mouth.

She also seems to be in a lot of pain. She is having a small dose of pain relief now and again.

I've been a wreck since Wednesday and can't stop crying. I honestly can't bear seeing her like this and it's breaking my heart. I am trying to be strong for my dad but I'm falling to pieces. I can't understand the decision not to put her on a drip. The doctors said this is end of life care and the drip will drag things on even more but part of me feels it's so cruel and almost barbaric that she is being dehydrated to death.

Sorry this is so long.

[PistFump]

Sorry for your loss OP, no more pain just resting.

[Crazyladee]

Thanks for the kind replies everyone X

[Homebird8]

So sorry for your loss.

[cleanasawhistle]

Thinking of you....lost my mum the very same way 2 weeks ago

[NellMangel]

Sending lots of love to you and your family. She was lucky to be so loved, and must've been a wonderful Nan to have such care from you all x

[Piglet23]

[MyHairyToe]

[escorpion]

My love I am so sorry to hear about your nan. It is heartbreaking. Sending you so much love

[Crazyladee]

Well my Nanna passed away this afternoon.

On the one day out of 11 days that I didn't go to the hospital as I had agreed to go at 6pm to do the overnight shift for my dad.

Both my DSs were there with her along with my Mum and Dad.

My youngest DS rang me ten minutes before she died to say she had started gasping for breath. Apparently she then took a massive deep breath and died.

I'm heartbroken but telling myself she's no longer suffering.

[ClaraZafara]

Lots of love to you

[PinkBuffalo]

thinking of you OP

[headstone]

Such a shame she can't have a syringe driver, it's the legacy Harold Shipman left unfortunately.

[SpringSnowdrop]

This breaks my heart for you and the only comfort I can find is in your photo as what a wonderful , wonderful thing to know such love at this worst possible time. The impact of human touch is amazing and what a hard time for you.
I feel so sad too that she is deaf as the idea of telling her it’s ok to let go seems such a good one .
And well done fighting for her as it sounds like more can be done and I wouldn’t be happy with the reasoning they gave as 24 hour pain relief sounds so much better . Can you say you can’t accept their decision when she is suffering to this extent and please could you have a second opinion?

[Spongeface]

Peaceful now. Hugs. X

[AcrossthePond55]

We will forever grateful that liberal pain relief was part of my dad's palliative care plan. Yes, it's likely that at some point the morphine dosage 'tipped' the scale, but he passed over so peacefully and calmly that I have no arguments or qualms about it.

Have you spoken to Gran about letting go? I know we were advised by the hospice nurses to talk to Dad and let him know that it was OK to go and be at peace. So we all spoke to him in turn telling him we loved him and that Mum and I (his 'girls') would be fine and that we'd see him again. My brother and DH assured him that they would be here to look after us. He slipped away soon thereafter.

Conversely, we told my Gran the same thing and said it was OK to go, but it wasn't until we left the room that she slipped away. It was as if she didn't want to die whilst we were there, but once we were out to the room she felt free to let go.

Anyway, I wish you peace and your Gran a swift and peaceful journey. Hold your memories tight.

[headinhands]

[retirednow]

[yawning801]

[Crazyladee]

Taken tonight. Come on Nanna.. Time to go to sleep X

[myrtleWilson]

Its very difficult OP - is there a local hospice that may have space - but they (hospice/Dr) may advise that transporting her now would not be good (although if the Dr is hinting at home move then perhaps this would not be an issue). It may be worth ringing around, although it would depend on admission procedures and the time it would take to "review" your Nan etc. But the dice may fall in your favour and it could be a more comfortable option?..

[Crazyladee]

I've just been singing a song to her (blush) that she used to sing to my little sister to get her off to sleep.
I sung it to my kids and it reminds me of her.. Now it's my turn to sing it to her..

Go to sleep my baby
Close your weary eyes
Angels up above you
Watching very closely from the skies
The great big moon is shining
The Stars begin to peep
Time for little pickannies to go to sleep.

[PistFump]

I'm so sorry to read this OP as I've very recently been through the same thing with my own nan following a deterioration in her dementia. In the very final stages she was sedated along with pain relief to relieve her of her discomfort. I just pestered and pestered for pain relief whenever there was a hint that she needed it. There was a time that she had a pain relief patch on her skin but I'm afraid I can't remember what it was called but maybe you could ask about that if she doesn't like needles. Thinking of you and sending love your way, it's such a distressing and difficult time watching someone you love in this situation

[Crazyladee]

Thanks for the replies and thoughts.

She's in a medical assessment ward which was where she was placed from A and E which is where she was ambulanced to from the care home.

The nurse on shift has told me that the palliative care team have said the syringe driver is not needed as it would be too much of a jump for her to from what she's having now which is two doses a day or so to 24 hour constant pain relief from what's she's having at the moment. She is sleeping a lot but when she arouses she is grimacing and crying out a lot.

I do believe that the doctor was wanting to see if we wanted her to go home to die but the heartbreaking truth is that she doesn't have a home to go to! The care home weren't great at providing care for her before she was ill so there's no way it's a suitable place for her to go to now! The doctor also mentioned that they needed her room but we've dug our heels in and told him to jog on.

[myrtleWilson]

Hi OP - am so sorry to hear about your Nan. I have to say her care doesn't sound at all like the care I saw with my mom who died at home (but with on call nurses and regular Macmillan sitters) nor that experienced with my sister who died in a hospice - she was only in early 40s. My sister had a syringe driver for several weeks and in the hospice her pain relief was regularly adjusted - even after she fell into unconsciousness any "agitation" we saw - the staff would adjust pain relief. The health care assistants would also come in during the day to wash her/change her nightclothes and brush out her hair - they were so caring towards her - it really helped the family. Is it the actual palliative care team who are treating her - if not can you insist on them coming to see your Nan? I think they are much more aware of the wider holistic nature of terminal illness and are there to support the patient and the family members. Take care of yourself

[retirednow]

Please ask to speak to the palliative care team about her pain relief, the doctor may not have a lot of experience ask them why they don't think she needs it, it may be that she hasn't really had many pain injections.