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End Of Life? - Page 2 - Carers UK Forum

End Of Life?

Share information, support and advice on all aspects of caring.
PS. The hospice had remarkably good food, and a chef who would visit the patients to ask what they needed. Also good for visitors. Just a shame mum couldn't enjoy much.
Broostine93 wrote:
Thu Nov 14, 2019 9:03 am
Hi Guys,

It must have been a while since I posted- Gran moved into a nursing home at the end of June this year, so that's where she is currently (though, she said to me last week she wants to move to a hospice when things 'get really bad', as she put it).
I managed to catch the head nurse at the home last night during my visit and she provided me with some good information as to what will happen (whether or not that actually happens is another story- their track record of looking after her properly isn't great (hence my 'need' to be there every day to sort her out properly).
I am worried that correct procedures won't be followed (to put it a bit more into perspective, I saw the manager of the home last night for the first time since the initial home assessment, way back in June- even then, it was only because she was handing out a 'friends and relatives' survey. Otherwise, I never see her in or around the home at all (hence my lack of complaints up to this point).
Does she have a will or not? There are will writing companies. Start making plans and preparations now for her future. I hope the articles helped. Can you move her to another local care home that is better or not? Does she live alone?
Hi Thara,

Ref your comment about Christmas food- Gran is on a pureed diet (and barely eating any of that due to severe dysphagia). Unfortunately, it means we can't share any meals together anymore. Nice thought, though.
The will was written up when Gran was first diagnosed with MND- she is in a nursing home now, so does not live alone. Funeral has also been planned. Because there is so little knowledge about MND, there aren't any care homes that specialise in it, not have staff that are knowledgeable about it (I am assuming this is why most MND patients are cared for at home by their spouses/children).
Rosemary- The baby monitor thing sounds ideal. I wish there was something like that for Gran. It may be necessary towards the end, as her arms fail, due to her not being able to press the call buzzer. I may suggest it to the home to see what they think, thank you.

I had a phone call yesterday from the MND palliative nurse- she's coming out to talk to me in a couple of weeks to discuss the end-of-life plan. I am glad I'll be able to express my concerns to her regarding the Home's management of the delicate time to come.
Sorry to say that mum rarely called out loudly enough. I'd like to think that the nursing home or hospice would be aware of your gran's condition and act accordingly. xxx
Rosemary_1706 wrote:
Fri Nov 15, 2019 1:56 pm
Sorry to say that mum rarely called out loudly enough. I'd like to think that the nursing home or hospice would be aware of your gran's condition and act accordingly. xxx
Unfortunately, not really the case. I have to go nearly every day (usually, except Mondays and Fridays because Gran's sister usually goes up those days to 'take my place') to make sure Gran is comfortable. The staff are so busy that they do not make sure that Gran's limbs and pillows are correctly positioned (her nighty is usually bunched up under her backside, too), before they leave the room.
This means I am basically doing their job for them (I am a bit narked at the moment because Gran's sister has just decided not to bother going today, meaning that I now have to go up after work on the one evening I had actually made some plans).

But yes- I have tried several methods to get the staff to ensure Gran is comfortable before they leave the room- everything falls on deaf ears *I even wrote out simple instructions and stuck them on the wall next to Gran's bed at one point, for a few weeks- they went completely ignored, too*

I think this is why I am so anxious about them responding in a timely and correct manner, regarding making her comfortable for end-of-life. I have no confidence in the Home where Gran's comfort is concerned. Heck- they serve soup that is powdered and Gran chokes on it in front of me nearly every time I visit- none of the staff have cared, even after the speech therapist intervened to try and get tinned soup only. They've just carried on as normal.

Hope that explains the situation a little clearer.
Sorry to hear that. Actually I had to raise a safeguarding case against hospice (!) and that did get their attention. Hospice did not have access to mum's medical records. They thought they would try mum without a catheter after it had become blocked. It wasn't long before mum's bladder was full to bursting. I was livid and told them to put a new catheter in. Hospice didn't know mum's history and wanted to see what happened! Quite sad because their chief consultant was also a consultant at the hospital that had inserted it. That, along with mum's cries going unnoticed led to my safeguarding case against the hospice. Thereafter the staff were all over mum, like white on rice!!

This is the first time I've mentioned this safeguarding case. Mum had gone straight from hospital to hospice, but the hospice had only brief discharge note from the hospital. When asked about this, the hospice doctor said " We don't know and we don't care. We only treat the symptoms here. ". That came as a shock to me. But that is the blunt reality.

Even with that experience, I still believe that mum was still the best place in hospice, rather than at home.
Just rereading your issue with powdered soup. One day at hospice I watched an assistant try to feed mum soup. Mum was half propped up and on her side with mouth facing downwards. No surprise, mum wasn't eating. I took over, repositioned mum and sure enough, she ate the soup and some sponge pudding with custard and said she enjoyed it. (Per response from my safeguarding case, the staff was going to be retrained on feeding the patients!)
Broostine, have you made your own plan for your future when caring is over?

I found that I fell over a "Cliff of Tiredness" after my own mum passed away.
As carers we just keep plodding on even as the path gets progressively harder, and harder.
Whilst having a caree in hospital or nursing home is seen by some as the caring role being over, it isn't, far from it. It just brings a different set of challenges!

I had a holiday booked towards the end of mum's life, and the GP ordered me to go, whatever happened, to protect my own health.
Clearly your situation is different, but I would urge you to plan to go away somewhere, even if it's just for a few days. Just getting away from it all for a few days - even just an hour's drive away can be enough - can be helpful.
I found small self catering annexes were better than B&B, as I could get up when I wanted, go to bed when I wanted.
The first time I went away, I got up about 7am, had tea and toast and went back to bed with a book until almost midday, I was so exhausted.
Just bear this in mind.
Is your employer aware of the situation, and the requirement to "make reasonable adjustments" for you, as you are "disabled by association"?
Yes, BB, caring isn't over when caree is away from home. Different challenges exist where you would least expect them. Even if all is fine, it's still exhausting going to visit each day.
My mum was either in Bournemouth or Southampton, she lived mid way between them. 20miles either way for me.
Both had parking nightmares, even when I had a Blue Badge it would take up to 30 minutes to find a space.
Once I'd found a space it was a quarter mile down the corridor to the ward. No kidding.
Then there's the dirty washing I was given, some unpleasant. I'd give the nurses beautifully clean and ironed nighties, then sometimes I'd find them in mum's locker next to dirty nighties not in a plastic bag.
Then there's the hanging around to see someone, or wait while someone in the ward had a problem. Then the battles with the Discharge Nurses.
Mum had some mega long admissions, one went from December to May, another from May to the following January. Ultimately it was agreed she was far too frail to live at home even with a live in carer. Strangely not ill enough for Continuing Healthcare.
I'm so glad that time of my life is over.