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Dementia and Alzheimer's

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Original poster

Dad - End stage dementia.

14 replies

chickensaresafehere · 28/02/2017 15:48

Just asking for a hand hold.
Dad has suffered from dementia for the past 3 years & has got progressively worse.
He was transferred by ambulance to hospital from his nursing home yesterday & it seems that everything is slowly shutting down.
He cannot speak or swallow.He is losing quite a lot of blood & is painfully thin.
I hoped he would pass away in the night but he is still with us.They tried to do a CT scan on him earlier but he would not cooperate.
He is fed up of nurses & doctors trying to treat him & gathers the strength to get aggressive when they do(which upsets me even more).
I whispered in his ear last night that it was time to go & to stop fighting,but he's still here.
It's torture,I feel like a zombie .

OP posts:

CMOTDibbler · 28/02/2017 15:52

I'm so sorry to hear that. Have you talked to the care team about your wishes regarding his treatment?

Original poster

chickensaresafehere · 28/02/2017 16:06

We keep saying we don't want anything to prolong his life(he wouldn't have wanted that either) but the doctor was insistent on a CT scan to diagnose the bleeding.We have a DNR on his file.
I wish they would just leave him but I know thats not possible & I obviously don't want him to be in any pain.

OP posts:

CMOTDibbler · 28/02/2017 16:28

You can ask that he has palliative care only if you have PoA Health and Welfare - so he'll have pain relief, but nothing more. A CT scan had no point if you wouldn't consent to an intervention to treat the bleeding for instance. You can ask for a meeting with his Dr and the nursing staff to talk about this and get it documented - you may have to ask to involve the palliative care team.

Every1lovesPatsy · 28/02/2017 16:32

I'm so sorry, this is such an awful time.

If he is given painkillers, morphine in particular, it will ease his pain and also speed his passing. It is sometimes the kindest thing to do.

I really do feel for you xxxx

Original poster

chickensaresafehere · 28/02/2017 16:33

We have not got a POA, me & Mum are deputies for my Dad,but I presume that is only to do with his financial affairs.
They are sedating him to do the CT scan again.

OP posts:

Original poster

chickensaresafehere · 28/02/2017 16:37

Have just rang the palliative care team at the hospital,but they finished at 4pm.

OP posts:

Original poster

chickensaresafehere · 28/02/2017 16:49

He is not on any painkillers & it seems to me that he is in pain,but the nurses & doctors keep asking him if anything hurts & he just mouths no.
I feel morphine or something similar would definitely help him.
Oh God this is just awful.

OP posts:

PacificDogwod · 28/02/2017 16:58

What age is your father?
Does he have an Old Age Psychiatrist he is known to?

PoA or not, I'd be jumping up and down to get some decent palliative treatment for him.
He does not have capacity by the sounds of it, and Adults With Incapacities form could be filled in for him and medical treatment (that includes making the decision to NOT chase a diagnosis which at the end of the day does not change anything).

Please speak to the most senior person you can get a hold of this time of day, ideally the consultant responsible for his care. Ask them what they are proposing to ease his distress. Painkillers are very least they can offer -tbh the nursing staff are likely to be able to give him at least Paracetamol from 'homely remedy' or similar.

I am so sorry you and your father are in such a difficult situation .
It drives me nuts that we somehow got ourselves so tangled in legal intricacies that when it matters the person's needs seem to be irrelevant if the right form has not been signed.

Remember to eat, drink and sleep when you can

Original poster

chickensaresafehere · 28/02/2017 17:06

No,no OA psychiatrist.Googled 'adults with incapacity' form & it seems to be Scottish.We are in England.
I will ask to speak to someone higher up when we go back to the hospital.I had to come home to wait for my dd to come home from school
Thank you Pacific

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MadameCholetsDirtySecret · 28/02/2017 17:10

Hand holding. My DF is in end stage dementia and bed bound. He has aphasia so doesn't really speak much and then it is mainly unintelligible, sadly. He has some other serious issues too. I know how you are feeling. It is just shit isn't it.

thesandwich · 28/02/2017 17:13

Another hand here. It is so distressing. Please take the wise advice here and insist on speaking to someone re pain relief. Pals if neccesary. Thinking of you.

Original poster

chickensaresafehere · 28/02/2017 17:20

It really is shit,yes.
Mum is holding up quite well emotionally but has been quite ill over the past year,so that's been hard too & she relies on me to deal with everything & I am struggling to be honest,especially now.
Will probably take dh with me later for some support.

OP posts:

Original poster

chickensaresafehere · 28/02/2017 17:21

Sorry to hear about your Dad Madame

OP posts:

PacificDogwod · 28/02/2017 19:31

Oh crap, yes, sorry, I made assumptions.

There is nothing wrong asking assertively for his symptoms to be managed.
As PP said, a tiny dose of morphine will help with any discomfort he might have AND ease distress/anxiety/breathing etc.

Does he have a DNACPR in place?

It is so hard to be in your shoes - you should not need to have to be assertive on his behalf but sadly relatives are often left in that position.

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