End OF Life Care

[Dimelza]

Hi

Dad is deteriorating now and is on Oramorph. Yesterday he seemed in so much pain, even when I gently touched his knee as I approached him to say goodnight. I have tried today to ask about more pain relief, but the nurse (he was transferred to nursing care last week) said he hadnt even had oramorph today as he isnt in pain - well he is when you touch or move him! GP told me when I called him that syringe driver is the next stage to be added when needed, so I asked about this and she said he is not ready, he still has 1-2 spoons of porridge in the morning and can swallow the oramorph. But its not enough pain relief

He is being turned every 1-2 hours and the noises that come from him are heartbreaking.

I realise I am not a medic, but it feels like I am the only one who wants this to come to a peaceful end. There isnt much more we can do but care for dad and keep him pain free, and the pain free part isnt happening.

Feel so frustrated. I feel as if they think I want him dead asap because I want more pain relief, I just want him to die WITHOUT PAIN, its not the same thing is it

 

[Shedrech]

Oh Dimelza - that's heart-breaking to read
I don't understand either - not even regular paracetomol or some such?
You know your dad BEST - please go back to the GP and let them know that your dad is NOT being given the pain relief you know he needs. I know discomfort would make him cry out - but discomfort is low level pain - and he shouldn't be in any discomfort, certainly not suffering any pain.
Sorry - I'm not helping - just can't bear the though of his pain and your distress - wish I could go shout at them for you

Much sympathy

 

[nita]

GPs aren't always that good with pain relief, unfortunately. Does your Dad have palliative care nurses visiting? They are usually contacted via the District Nurse service. They know more about what to administer when people are approaching end of life. He should have some oramorph before he is moved and it may be he needs a higher dose. Sorry to hear of this and hope you can get more help soon.

 

[Timeout]

Ah Dimelza, I am so sorry to hear of your Dad's pain, you must be heartbroken too. I can only reiterate suggesting, DEMANDING the GP to give him something. Sometimes you need to shout to be heard. Love to you x

 

[Chaucer 1931]

Please,if only for your own peace of mind,keep on at the gp/nurse in charge to attend to increasing your dads pain relief,the fact he is groaning when they turn him,speaks volumes and they really ought to recognise that with dementia patients they don't or can't communicate their pain..

My mum is now on the syringe driver and is being topped up later with some buscopan,the nurses think she is deteriorating and I don't think she will be here by the end of the week..
They said if she is in pain when being turned or having personal care,they would up the pain relief,so I do think you need to be telling the staff,I really do,it's your right to speak up and you only want your dad to be pain free,it's not too much for them to allow him that is it? Xxx

 

[TinaT]

Phone the local hospice and ask that a Macmillan nurse comes to asses the pain. I had to do this when in a similar situation with my husband. Normally the hospice will only take a referral from a GP. However, the staff at the hospice decided to have an emergency meeting and sent the MacMillan nurse that afternoon.

The head of the district nursing team arrived at the same time as the MacMillan Nurse and both decided he needed more care than he was receiving. My husband was transferred early the next morning to the hospice where he received excellent pain relief until he died a few weeks later.

Keep on insisting that you need to see more pain care as at my husbands care home they hadn't the foggiest idea of how to assess pain relief. No one at his care home even recognised pain. They were too used to putting everything down to his long standing dementia.

I only wish I had kicked up an almighty fuss much earlier than I did.

Best wishes to you.

xxTinaT

 

[Dimelza]

Hi and thank you all soooo much. I managed to make them understand and it appears he wasn't given enough oramorph yesterday. Today he's had it 4hrly and is much more settled. The 30-45 mins before it's due he is very agitated and then it's another 30-45 mins until he settles. Syringe driver is prescribed and as today he's barely had anything past his lips I don't think it'll be long before that's put in place. Palliative care don't appear to be involved. Should they be?

 

[nita]

They can be and they are the experts in end of life care. As someone above said, can you contact the local hospice or ask that the doctor does? I am not sure if your father is at home but, if so, there is a "hospice at home" community service where they will come out to you. They can give you support too. I think both the GP and the district nurses were involved in getting care from them for my Mum. She is not right at the end of life but is receiving a lot of pain relief for severe arthritic pain. Ours are now NHS nurses but there can be MacMillan nurses attached to them - they are used to providing care to dementia patients now too.

 

[nita]

Sorry, Dimelza, I just realised your Dad is in a care home where he stayed after respite. I imagine care homes are expert at palliative care and may not need to bring in specialised nurses. I don't really know the set-up in CHs - perhaps someone else will help.

It sounds like your Dad has had a very rapid decline since his strokes. It must be so hard for you. I do hope you are having enough support yourself to cope with this.

 

[Chaucer 1931]

Hope your dad is pain free and you have had that worry lifted from your mind Dimelza,it's hard enough I know coping with the watching and waiting..
As far as palliative care goes,If your dad is in a care home as opposed to nursing home,I would ask the manager/supervised to ensure that the district nurses have the palliative team involved,I think they should be if they are setting the syringe driver up for your dad..
I'm with you,sending you love and support,this what we are going through with our parents,your dad and my mum,it's so hard and heartbreaking to endure,it's last act of love for them isn't it? X.

 

[Dimelza]

Morning. Dads been asleep and unrousable since yesterday afternoon. Just receiving psi relief and mouth care really. He has Cheyne-Stokes breathing plus gurgling too.
I'd assume hell not manage liquid meds much longer and move to syringe driver.
I'm quite scared to lose him now. I've been so strong fighting for him for so long. I can't imagine him not being here to talk to and touch

 

[Shedrech]

morning Dimelza
I hope your dad remains comfortable
Talk to him now as much as you can, say all those things you want him to hear so nothing goes unsaid
and keep pictures of him in your mind, ones of happy times and loving words, those he would want to say again if he could
I wish you strength and hope for peace for you both

 

[Chaucer 1931]

You're doing amazing,he knows you are there with him and that matters the most,it's so hard to sit and know that this is the last part of the journey..he knows you love him and that is the most important thing right now to you both,you are doing everything you ever could for your dad by just holding his hand now.
My mum hasn't eaten or drank anything since a week ago today..
Shes the same stage as your dad,and I'm just holding her hand,talking,keeping her mouth moist with bits of ice..it is amazing how they do seem just resting,compared to the distress and active part of the disease.. I'm with you Dimelza,it is our hearts that's breaking now,but that is our love for our loved ones.Xx

 

[Dimelza]

Oh Chaucer that's a long time. I imagined he wouldn't last the weekend.
He's being put on the syringe driver as he's no longer swallowing. But seems peaceful. I'm just talking his ear off telling him I'll miss him and I love him and reminiscing about the old days happy memories xxx

 

[Chaucer 1931]

I didn't think she would last this long either Dimelza! It's been the longest week I can tell you,but today/tonight is possibly the last one my mum will see..she's got the breathing pattern,skin has mottled,all the signs that I don't really want to see..

How are you and your dad doing?
I hope he has the syringe driver by now and he's as comfortable as can be,have you got someone with you,just to give you ten minutes breather?,
Xxx

 

[LadyA]

Thinking of you both.
Chaucer, do you have the swabs, to moisten your mum's mouth? Although (for some reason - "refreshing" I suppose) they are lemon flavoured, and my husband hated them. Vaseline on the lips and around the mouth helps a lot too.

 

[Quilty]

My heart is with both of you tonight.

 

[Chaucer 1931]

Thank you for your kindness Lady A and Quilty,sadly my mum has passed away this afternoon.She passed peaceful as could have expected under the circumstances.
I've made a little post of my own,so as not to distract from Dimelza,s. Xx

 

[fizzie]

Oh Chaucer that's a long time. I imagined he wouldn't last the weekend.
He's being put on the syringe driver as he's no longer swallowing. But seems peaceful. I'm just talking his ear off telling him I'll miss him and I love him and reminiscing about the old days happy memories xxx

That is a lovely way to spend time - hearing is the very last thing to go and you can be sure that he knows you are there. You take care of yourself and as much as you can enjoy this closeness and that he will soon be at peace with no more pain. He knows you have been fighting for him and looked after him in every way possible and he would want you to rest and look back on the happy times and the good memories. I think that when our loved ones die we learn more about them - about the person that they really were through all the years and not just as a parent and that gives joy in itself.

Take care of yourself xxx

 

[LeedsLass]

Dimelza I wish you strength for the coming days. It must be so tough for you to be there. X


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