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end of life choices

(15 Posts)
123rd Sun 24-Apr-16 21:00:20

Such a horrible thing to have to think about but my dear nan has got severe dementia. She is in a lovely care home. But within the last month she has fought off three infections and her physical strength has just disappeared. Now, in the last week, she is unable to swallow her meds. Nothing more then general pain relief etc and a diazepam type med. but she has also stopped eating and drinking. We are offering her everything but she can't wake herself up enough to take any thing.
My belief is her body is slowly shutting down. She is in her 90s, and physically fine until very recently.
My question is when would the care home decide it would be better take her to hospital to try and rehydrate her...or do they get to decide it would be kinder to her to make her comfortable and see what's happens?? Tia

otherstories Sun 24-Apr-16 21:11:21

I've never worked in a care home but I would expect it to involve a discussion with the family, even if just to inform you of what her doctor (probably gp) thinks is appropriate at this time. It's possible in a care home that this decision would be made without medical leadership when it is a natural progression towards end of life. Can you speak to the nurses/manager to find out? Is it possible your nan has made an advance directive?

Very sorry to hear she is unwell though, what are your thoughts? flowers

123rd Sun 24-Apr-16 21:29:32

Definitely not made any plans herself. She was very much in denial of the situation. As these things tend to do, it has deteriorated very quickly recently. They are calling the gp in tomorrow to assess her.
My poor mum says she feels sick having to think about it but I've told her-and my other sisters too-that we all think nan wouldn't want to be messed around. When she has had to be in hospital previously she has become very distressed about it. DM has signed a DNR at hospital after an admittance about a month ago. Would that DNRbbe in place at the care home do you think?
I think nature should be allowed to take its course -sorry if that offends others.

Kwirrell Sun 24-Apr-16 21:58:25

My mum was in a care home and they were very good when it got to the stage your Nan is.

They told me that the appetite goes at the end of life and that a state of euphoria kicks in. My mum was hydrated to keep her comfortable but there was no other intervention. I would just say that, be prepared for this end of life stage to, last longer than you might expect.

I am sorry that this is happening, and wish you and your family strength.

123rd Sun 24-Apr-16 22:09:02

Thanks for the kind thoughts and words. It's good that she is so peaceful now as there have been times where nan has been agitated and verbally aggressive. Never physically tho.
She is classic text book dementia patient.
And I had mentioned to my mum that this "bit" maybe last longer but I'm sure no one is ever certain.
I feel so sad for my dear mum.

otherstories Sun 24-Apr-16 22:20:20

They should have sent a copy of the DNAR form to the GP and care home, without it normally people are resuscitated (again, this may not be the case in a care home unless paramedics are called, I'm not sure).

I tend to agree that death is inevitable and it is more important that symptoms are controlled and people are kept comfortable. Perhaps the care home have access to palliative care nurses or someone trained in bereavement counselling for your mum? Wishing your family peace at this difficult time

123rd Sun 24-Apr-16 22:36:52

Thank you

Kwirrell Sun 24-Apr-16 22:41:24

Can I just add to my previous post. My stepfather died in hospital a few weeks ago. After my mum died, 6 months ago, he really did not want to live anymore. The hospital were extremely kind and very understanding of his wishes. The tenderness and care he received as he was eased from this life was wonderful.

I have lost 3 elderly relatives in a very short space of time. I hope my passing will be as easy as theirs was.

Wolpertinger Sun 24-Apr-16 22:46:37

Not every care home will think ahead like you are - some will simply send people in to hospital partly to cover their backs and partly because they just haven't planned for end of life care.

If you don't want this to happen, and I think you are very wise as it sounds like hospital would have little to offer your nan and she would hate being taken out of the kind environment of her home, you and your mum need to have a chat with the care home and GP to say that you know she is very poorly now and don't think she would want to go back into hospital in these circumstances.

The DNACPR from the hospital should be in place at the care home but it is worth checking just in case. Remember this only covers CPR though, not any other form of treatment - so you absolutley need to have the conversation about having end of life care at the home and not going back into hospital.

Also they need to get 'Just in Case' medications prescribed for her from the GP so she has any pain relief or other medication she needs ready at the care home at end of life, without having to wait for a doctor and a new prescription.

123rd Sun 24-Apr-16 22:53:06

Thanks for that. I think I need to show my mum this thread ... We did worry that the care home would-as standard- send someone into hospital. It would be best that everyone thought along the same lines. I'm sure all of the family members do but as mentioned the home need to make sure they do everything correctly.
Horrible situation for everyone to have to contemplate. Hugs to all of you who have gone through it
I hope nan just slips away in her sleep.

GETTINGLIKEMYMOTHER Sun 24-Apr-16 23:15:16

It is such a difficult time - you have my sympathy. We had to make the decision for an aunt, nearly 87 with pretty bad dementia. She was refusing to eat and drink after the umpteenth UTI and the care home asked whether we wanted her taken to hospital and put on a drip, or (basically) left at the care home to die.

We could only ask the GP what he'd do if it were his much-loved aunt, and he said he'd leave her where she was, in familiar surroundings, where they would keep her comfortable, rather than take her to a noisy hospital, to be poked about by strangers, when it was only going to happen again quite soon.

I sat with her a lot during her last days. The care home and staff were lovely - the staff did keep trying with sips of water and spoons of yoghurt, but she clearly did not want any of it -she would close her mouth and turn her head away. I think she had honestly just had enough. She did not seem to be in any discomfort and drifted away quite peacefully. It was a horrible decision at the time, but I never regretted it afterwards - I am sure it is what she'd have wanted.

In such cases I have heard it put (by a doctor) like this: 'They are not dying because they are not eating and drinking. They are not eating or drinking because they are dying.'

When it came to my mother some years later, there had already been a discussion with the care home about end of life. Hospitals are often terrible and frightening places for people with dementia, when they do not understand what is going on, or why, and are all too liable to try to pull drips etc. out. So the CH knew that she was to go to hospital only if absolutely necessary - the case of another broken hip - she'd already had one at over 90. There was already a DNR in place, which IMO was both sensible and kind for someone already well over 90with advanced dementia.

In the end she went downhill quite suddenly at 97 and died within 36 hours, and the question of hospital never arose.

123rd Sun 24-Apr-16 23:39:31

My heart breaks as this is such a regular thing... But such a hard thing to be part of xx

SecretSpy Sun 24-Apr-16 23:46:45

Sorry you are going through this. Please speak to the staff and let them know your preferences, if it's a nursing home they will be able to keep her comfortable there, if it's residential they will need to ask the district nurse to sort out any medications she might need.

If you don't want her to go to hospital please tell them, imho if it's inevitable it's much better for everyone if she's cared for by people who know her.

123rd Mon 25-Apr-16 14:09:38

I've been up to see my nan this morning. Poor thing. Just keeping her comfortable. We able to keep her lips moist with a sponge stick. I know she is really old and has had a great life but I'm gutted.

Kwirrell Fri 29-Apr-16 12:44:36

Hope you are doing OK 123rd. I am thinking of you.

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