End of life - A handhold and experiences please

[WhenRobinsAreNear]

My beloved grandmother is reaching the end of life stage now. Advanced dementia, multiple health issues, severe weightless, Bed bound, mostly sleeping, minimum fluid intake. We always knew this was coming but the deterioration has happened so fast.
We have had such a struggle to with DNS in terms of getting her the correct pain relief, a fight at every corner and her pain is still not controlled. It's heartbreaking and draining.

I don't know how long we have but I don't think it will be very long. I have found many of the end of life stories on here comforting and helpful for preparing me for all that is to come, so if anyone would like to share their story it would be really appreciated, I'm not asking you to sugar coat it, I know the experiences vary massively.

Thankyou

We've had a difficult weekend, pain when being rolled again, says the duvet is too heavy so she's got some blankets now.

The district nurses are supposed to come out today as she has some weird bruising, purple in so many place. It's not the extremeties so doesn't fit with the mottling they can get and her carers don't know either.

They were rang on Friday and said they would come today. If they do what they are supposed to (check her whole body) they will have to move her and it's likely she will be in pain.

Her name is still on the list for a care home, I forgot we had done this, a place was available at the very start of this but it looked like it wasnt going to be long so we turned it down with the aim of keeping her at home.

Unless we pay for more care overnight and in between her calls there's nothing else we can do to keep her at home, there's no more help currently available to her. I don't know her finances so I don't know how financially viable that is but from what I've seen a lot of family's end up putting there loved one in care because it becomes the most financially viable.

I don't know what to do for the best. Her pain patches can't be upped anymore, the district nurses won't put a syringe driver in because she's home alone.

In order to keep her pain free I may have to deny her wish to die at home.

But then I've seen it first hand that there's still resilience to give pain meds when in a home so what if I do that and they still won't give her more pain relief?

This is an impossible situation to navigate

Is there nobody with her at night, OP?
I'm so sorry this has been so awful for her and for you.
You'd think EOL care would be better nowadays.

No, unfortunately at the moment she is alone between care calls (max of 3 hours in the day) and then alone for nearly 12 hours overnight.
I don't like it but it's hard to know what to do. She's unable to move and it appears she just sleeps over night so if we paid for someone to sit with her we are potentially using funds that we don't need to for her right now. We can't as a family sit by her bedside long term.Shes showing no signs of going anywhere, if she was we would be able to do something to be with her constantly but not indefinitely.
A care home would at least allow her to not be alone for such long periods of time, the option is there when there's a place.

I want to send you love, a hug and the acknowledgment that someone out here knows what an awful time you're having. I know how much this is weighing on you and I know how much you are carrying. Please know that this is seen. My DM was in a similar situation earlier this year - four carers a day and alone overnight. I was never comfortable with it but there was no alternative. In the end, she was only home two weeks before she contracted sepsis and was rushed into hospital and from there went to the home she's in now.

This indefinite timescale is excruciating isn't it?

I’m so sorry to read this OP.
Unfortunately we had a similar experience with my gran last year. She had been in a lovely care home for nearly 9 years. Mild dementia, but very few physical problems apart from being nearly 100! It was very much a residential home rather than a nursing home though - i had several conversations with the management about end of life care and they were keen for her to stay there.

Once it became obvious that hospital admissions were doing no good, and the GP declared end of life she was prescribed “the good stuff” this was the end of September.
She mostly slept, but at times was agitated, hallucinating, and i believe in significant pain. She was given liquid paracetamol. Basically bloody Calpol!
When I kicked up a fuss and district nurses came out, of course she would be asleep, so off they’d go without administering any of the end of life drugs. And then because the drugs hadn’t been used by 10 days they’d have to be returned to the surgery, (and no doubt destroyed) and the GP would have to prescribe again, and the whole cycle would start again.
She eventually died at the beginning of November, only having the syringe driver for the last 3 days.
I’m haunted by the thought she spent the last two months in pain.

I think perhaps things would be different in a nursing home as possibly they’d have staff who were allowed to administer the controlled drugs, but I really wish I’d trusted my gut and had her moved to a hospice.

Talking to medical friends, they believe the district nurses reluctance to administer the end of life drugs is partly rule changes due to Harold Shipman - certainly when my father died at home many years ago, he had excellent pain relief.

It’s really tough OP, I hope she is at peace soon. X

Hi, I'm so sorry you're going through this. My family and I have been through the same recently too. We were with her even at the end and I found it a huge comfort. We just sat talking to her, holding her hand, stroking her hair.
There was nothing about the process that was traumatic I promise. If she's end of life they can administer meds if your grandmother is unsettled too.
Remember that you don't owe anyone an apology if you don't want to be there it's a real personal choice. I was so glad I was and even now find comfort that I was there to hold her hand. It's not for everyone and that's fine too x sending you love and strength xx

I don't think you should get too hung up on her wish to die at home.

My Mum and my DH both wanted to stay at home for as long as possible, but in the end they realised that they would be better off in the hospice and accepted a place with gratitude. It's entirely possible that your gran has got to this point but can't express it.

The last 48 hours of DH's life were spent in the hospice, enabling me to stop being his carer and go back to being his wife, for which I am eternally grateful.

Thankyou to those who have posted, I am going to try and get back to you all properly tomorrow but I thought I'd pop on with a quick little update.

She's still in pain when moved even with the patch at its highest. However miraculously I got a call from the gp who decided he wanted to come and see her. She's now on a different patch, one that's changed every 3 days. Explained all the issues with the district nurses. Then 10 minutes after he left my dad gets a call from the district nurses saying that if this patch doesn't work then they will be happy to put the syringe driver in...
Me thinks the Gp might have said something 😂
This is such a bitter sweet moment because the GP had to be really frank in regards to what this patch could do. There's a very high chance that with this now being on we will no longer get any form of communication at all and likely to be a very steep slippery slope to the end. However they said this two months ago so 🤷🏼‍♀️
I've cherished every smile and moment of recognition but if I have to choose between that and he being pain free then I'm picking the last one.

I'm full of admiration for your fortitude in this stressful situation.

It's about time that syringe driver was set up. My goodness, those district nurses!

I hope your mother gets a measure of peace now.

Again I'm so sorry to all that I haven't had a chance to reply to yet, I promise I will get round to it.

Honestly I'm exhausted beyond belief now.
The fentanyl patch has been on since thurs and changed today. She's in agony it's not touching the pain when shes being moved.
I effectively missed my child's birthday party yesterday because I was called out to ring the district nurses due to the severity if the pain. We managed to get a nice one but still she was unsure about giving anything as my nan had settled and wasn't talking to her to tell her she was in pain. She actually did more than any of the others do and touched her (you can't even stroke her leg without her crying out) she gave her a small dose.
I then had to go to work so wasn't able to go back but from what I've been told this didn't help the pain either. Then round in circles again with DNs coming but looking at her and her not showing pain in that moment so nothing given.

I can't keep doing this, I think it's time for a nursing home. I will be calling tomorrow

Oh and the district nurse said they would expect her to be in some pain with movement. Fully appreciate this but there's pain and discomfort and then there is crying your eyes out screaming, she's the latter and I don't think that sounds ever going to leave me

OMG haven't they set up the syringe driver?

@TheShellBeach nope no syringe driver. It literally seems like they want her to be in constant pain to put one in. This is horrific honestly I am so destroyed.

I'm so sorry to hear this. It's just so heartbreaking. I know this is a tired cliche but you are honestly in my thoughts. Please take care xxx

Can you ask the hospice to assess her?

I am so sorry you've been through this too.
It sounds like you did all you could at the time and I'm really pleased your gran got a syringe driver in the end!
No decision is ever perfect, you could have put her in a nursing home and still been in the same position, it's impossible to know. Hindsight is a wonderful thing so they say. Please don't ever doubt yourself, you did your best I'm sure of it x
I completely agree about the rule change. It's ethics mad and covering their own backs. I genuinely am starting to think that they know if they give my a bigger dose thay would be it and they are skirting too close to legal for their liking so they'd rather leave her in pain and save their own arses.

Thankyou I'm so sorry you have been through this but I'm also glad you found it comforting.
It's strange but I've been so focused on trying to get adequate pain relief that I don't think I've even had a second to stop and let it sink in that's she's dying. I've always imagined myself being there at the end with her but I can't say for sure, I guess it depends on how it all unfolds x

I think you are bang on the money with this now. I've come to accept there is just not the support at home within the community and I cannot physically or emotionally do anymore and it's just not enough. Sometimes putting someone's best interests first isn't what you initially expected.
I don't have a moment to just sit with her in peace and hold her hand anymore, I'm constantly doing this that and the other.
It's not what she would want.
Thankyou for sharing your experience of this, it's been an eye opener and I have been thinking on it since you first posted. A viewing for a nursing home has been arranged but currently no spaces for a month.

Thankyou, and you are in mine too.
And the indefinite timescale is excruciating i agree. If we just knew how long we could prepare ourself and be on it for x amount of time. It's so sad that we stop being family and just become effectively unpaid carers too.

This has been a heartbreaking thread @WhenRobinsAreNear
I'm just so sad for you and I wish there was an easy answer.
I do think that the hospice is the very best idea in your circumstances. Your dear mother will get excellent, round the clock care, and good pain relief, and you'll be able to stop worrying about all this.

I think about you every day.

❤️ Thankyou
This thread and everyone on hear has been a massive comfort to me, I'm not quite sure I'd still be going without it.

I havent even updated on today because I've just not got it in me to go into full detail but effectively. Another request for syringe driver from GPS as two or them thought this would be better than the next patch. Visit to check her cough she had developed, wasn't in pain so gp said let's cancel string driver for today (I agreed with this as it genuinely looked like the patch has worked as go could touch her all over and no pain at all) then as sods lawn would have it the next 2 care calls she was in agony and suddenly developed some swelling. Back to the gp I went and they came out again and said the swelling could be many things but could be a fracture... Obviously only way to confirm is and xray and that's just not even an option in terms of what's best. Gp put through an urgent referral for a syringe driver based on this. District went out without telling me and found her asleep, left without doing anything. Carers came in, still in pain. Round and round we go. Apparently the district nurses will come tomorrow for a day visit to assess for a syringe driver but I think we can all guess how it's going to go. The gp will increase the patch and there's more strengths than I thought there was to explore. Surely one of the has to work or something has to come together soon. I'm forever haunted by how skinny she is, I will never get this out of my head. That I won't go into detail of because those who know will know and those who don't I pray you never do ❤️

I agree with @TheShellBeach that the best thing at this point would be to get the palliative care team involved. They are the absolute experts in these situations, and if you're having to wait a month for a nursing home place they may be able to help you till then. It doesn't have to involve admission, though they might offer a short stay so they can sort out the best medication for her. You can then go back to Plan A where all the nursing home has to do is nurse according to whatever protocol the specialists have put in place. Can you speak to nice GP and ask for an urgent referral?

Sending strength and courage.

They came this morning and did nothing but write a note for the carers telling them to administer oramorph before moving (despite being told the can't do this and she won't take it) gp was informed and was apologising profusely, did a referral to the palliative team.
Palliative care team have come out a few hours ago and assessed her, even rang us to say the were on the way from nearest city and would be 20 minutes. I wasnt able to be there but my dad was and said the nurse was lovely. Nan now has a syringe driver with pain relief and relaxant in, no doubt in their mind that she needed it... They are asking Marie curie nurses to speak to us tomorrow so that we can arrange for them can sit with her over night. The last care notes of the night say that she wasn't in any pain. I don't remember the last time I read that and I can't tell you how relieved I am. I hope we can keep her pain free now.

Oh thank heavens.
I'm so glad to read this update.
I am still utterly baffled as to why the DNs have steadfastly refused to put the syringe driver in.

But I'm very happy that the palliative care team have finally sorted it out.