dread

[Jane3]

mum is in a NH on EOL care . I am with her every day but I am nor sure if I can sustain this , the staff seem ok but are busy .
I dread being there and having to prompt them to give the anticipatory medication.
Mum has been there three weeks with minimal fluid or food intake, she is on pain patches and paracetamol , She has AD which accelerated after a UTI a fall and hospitalisation.
I want to make sure she has a dignified pain free death as I let her down by not moving in with her to look after her, I thought about it so many times and thought we had so much more time , she had carers and my sister was her main carer as she lives close.
has anyone experienced this please

 

[DeeCee7]

Hello @Jane3 , I am sorry to read you are in this ghastly position, and just wanted to send you my thoughts and hope it will soon be over. I have not been in this position myself, but many others have and have written about this on here.
Please try not to feel guilty, you haven’t let her down, as your mum was well cared for by your sister and the professional carers, and I am certain you provided much support too.
You won’t be able to sustain your vigil every day, and often the loved one slips away when the relative pops out for a coffee or a toilet visit anyway, so do allow yourself some respite time from this. There’s no blueprint for this, but doing your best as you feel able, is what your mum would want for you.

 

[Sterlingtimes]

Dread! Yes, I am visiting my mother in hospital in the next few hours. I realised that even with carer visits to her home and other help, I could not manage. My situation is the same as yours.

 

[Jane3]

Hi so sorry to hear about your mum, mum was in hospital for three weeks and wet from being able to eat and being emerging on EOL care, although there were no injures from the fall, we are shell shocked to say the least. The ward was closed for one of this weeks because of a COVID outbreak so no one could visit.
All I can say is get as much clarification as you can about the next steps and your mum may well rally round as it appears that no one really knows with dementia.
take care

 

[Muggers]

We had a similar situation with mum, she had respite care in a residential home for two weeks as she is cared for at home, it was harder for us than it was for her, as she went into a decline some months later she went into a nursing home for two weeks of respite, she seemed ok and again heartbreaking leaving her, when she came home the home carers picked up the care rout once more, I noticed one of the girls crying and she asked me to go into my mums bedroom where she was being prepared for bed, she had a horrific open bed sore on her bottom, I have never seen anything like it, we have always been adamant that the carers check and cream all her pressure points so to see this was very upsetting, we made a decision that all her care from then on would be at home, it is very hard and not all families can accommodate this, fortunately we have three care packages in place now and it works. Mum is on end of life now but she is comfortable, you are well within your rights to express how to deal with the care you want for your loved one, we have to be their voice. Xx

 

[Jane3]

The staff in the home are all good but they are short staffed most of the time and very busy, I have picked them up on a couple of things mainly medication, We would not be able to cope at home as I live and work 3 hrs away (though I am currently juggling and using up holidays).
Its so hard I cant be there all the time and at some point will have to return to work.
love to you both and thank you for your kind words I am really struggling to get through this. xx
I had my first break for five weeks today as I went to collect some work stuff. I will be back with mum in a bit I really don't think she knows who I am but I am someone there with her. I so regret not moving in with her but it too late now whatever the reasons.

 

[Muggers]

The staff in the home are all good but they are short staffed most of the time and very busy, I have picked them up on a couple of things mainly medication, We would not be able to cope at home as I live and work 3 hrs away (though I am currently juggling and using up holidays).
Its so hard I cant be there all the time and at some point will have to return to work.
love to you both and thank you for your kind words I am really struggling to get through this. xx
I had my first break for five weeks today as I went to collect some work stuff. I will be back with mum in a bit I really don't think she knows who I am but I am someone there with her. I so regret not moving in with her but it too late now whatever the reasons.

You’re doing your best and that’s all you can do, I’m honestly running on fumes, it’s emotionally draining, I don’t think my mum knows who I am but the moments that I spend with her are priceless, cherish all of yours. Xx

 

[sue31]

The staff in the home are all good but they are short staffed most of the time and very busy, I have picked them up on a couple of things mainly medication, We would not be able to cope at home as I live and work 3 hrs away (though I am currently juggling and using up holidays).
Its so hard I cant be there all the time and at some point will have to return to work.
love to you both and thank you for your kind words I am really struggling to get through this. xx
I had my first break for five weeks today as I went to collect some work stuff. I will be back with mum in a bit I really don't think she knows who I am but I am someone there with her. I so regret not moving in with her but it too late now whatever the reasons.

In hindsight, when it all comes to an end there are many things most of us here look back on with some regret. I know I do.
Have you asked for Hospice referral or looked into doing a self referring?
I pushed the “home” allocated Gp to do one for my mum. She was admitted within 2 days.

Amazing staff & atmosphere. Calming for her after the noise & mayhem of the dementia floor she had been on and I felt incredibly safe in knowing how attentive they were 24 hours a day. Nothing was ever too much trouble. Always there to chat/advise. The support was unbelievable - even 2 months on they are checking on how il doing! Those last two weeks with mum were heartbreaking but she was in the best place possible, I’ll be forever grateful for the care she received.

 

[Jane3]

kind words mean so much especially if like me you hardly speak to anyone other than the staff at the home.

 

[Jane3]

I asked the home and GP for a hospice referral and was told that there were no beds and it was not possible.
I contacted the hospice and they said they did not take EOL dementia patients that were in nursing homes.
I asked about hospice care in the home and was told that the home would provide the care and that Macmillan nurses help was only available is there were extra complications.
There do not seem to be any complications other than dying of dementia. I would say that is complicated

 

[Knitandpurl]

You mention your sister, can you sort out a timetable with her for being with your Mum. This is a truly dreadful time, but also one to share good memories with her. She may not hear but you will. Talk to her about all the good memories you have over her lifetime abd the things you are grateful to her for . Tge happy memories you have, not just the “if only” and “I wish “ ones. If she can hear these are the things that will help ease her passing. Thinking of you. 🫂

 

[Sterlingtimes]

I contacted the hospice and they said they did not take EOL dementia patients that were in nursing homes.

My mother's consultant explained to me a few days ago that hospices are not used in such circumstances.

 

[Jane3]

hi with mum last night and today hardly any response from her now but they say she ate few spoons of porridge but didn't drink, she had a few sips with me ...
i played music last night moisturised her skin and brushed her hair.
what else can I do ?

 

[Grannie G]

what else can I do ?

You are doing all you can. I feel your sadness and I`m so sorry.

 

[sue31]

I asked the home and GP for a hospice referral and was told that there were no beds and it was not possible.
I contacted the hospice and they said they did not take EOL dementia patients that were in nursing homes.
I asked about hospice care in the home and was told that the home would provide the care and that Macmillan nurses help was only available is there were extra complications.
There do not seem to be any complications other than dying of dementia. I would say that is complicated

Seems like hospice care is a bit of a postcode lottery, just like social care & the nhs.
The gp said my mother stood little chance of getting in, but the lady that came out to assess mum was brilliant. Immediate fast track.
Are they refusing to assess even?
Make a formal request to have a person come out & see your mum, make sure you’re there. Unfortunately it’s a case of who shouts loudest these days. If you back down your left to muddle through.

 

[Jane3]

they are refusing to even consider unless there are complications. Apart from dementia thankfully mum had no other health issues. Apart from dying as absurd as it sounds I know.
They all say that the NH is a suitable place for EOL.

 

[Jane3]

At this point , (mum is very unresponsive today) I'm not sure how long we have left or if it would be wise to move her?
Its all so sudden and there is no guidance . Sue was your mum in a NH? as they said they would not take EOL from a NH?

 

[Jane3]

will I know when mum is in the final phase of EOL, worried that I will have to be the one to contact the nurse?

 

[sue31]

At this point , (mum is very unresponsive today) I'm not sure how long we have left or if it would be wise to move her?
Its all so sudden and there is no guidance . Sue was your mum in a NH? as they said they would not take EOL from a NH?

She was n a nursing home for assessment to see what care she needed. That place was an absolute hell hole.
I raised so many concerns in 3 weeks it was madness. Mums decline was very rapid while there & I went guns blazing for the GP that the ‘nurse’ said she was in contact with allocated to the home. GMC was mentioned & suddenly he couldn’t have been more helpful. Makes me think a lot of the patients in that place are either alone or have family that don’t give a damn. It was horrendous - should not even be operating.

I think a lot depends on how firm you are,

if you’re not self funding at their extortionate rates they are ripping the LA/NHS. off for 1300£ a week so are not going to give up on squeezing a few more weeks out of someone who isn’t going to complain. That place had 58 patients x 52 weeks.
If your gut is telling you somethings a bit off make yourself heard. Head to the managers office with a list of questions. If you don’t agree with them be firm with what you want.

 

[sue31]

will I know when mum is in the final phase of EOL, worried that I will have to be the one to contact the nurse?

will I know when mum is in the final phase of EOL, worried that I will have to be the one to contact the nurse?

It’s a very strange time. Mum was asleep on & off her last couple of days, strangely when she was awake she was more ‘with it’ than she’s been in months. She had barely eaten anything in the last week. Survived on sips of water.
Her last day she refused everything, just gazed into space, didn’t appear to be able to see or hear me.
The last couple of hours she was sleeping, very peacefully & totally relaxed, weirdly I was watching her & she seemed to constantly change colour, very pale, then grey, flushed & then pale orangey/pink. Was very odd, like a Chameleon, guess her body was shutting down. Mum always had cold hands, apart from that last day.
Then for about 3 or 4 minutes her breathing became louder, not the rattle you hear about, she sighed & was gone.
I think the staff were surprised at how quickly and quietly she went, although expected it seemed to just happen so quick, they had been in to check on her 15 minutes before hand.

i still can’t quite believe she’s gone it’s so quiet, my god she loved to talk! Even though it was the same stuff over & over.!