End of life but what now?

[Buttercup24]

Hello can anyone give me some advise my mum is end of life care with vascular Dementia and is 97 years old. She is in extra care housing with care staff going in regular and then I visit 3 times a week, It was always her wish to die in her own home so i have kept her wishes in place. The care staff have their office downstairs so are in house 24/7.
The care they deliver is 100%, however the care manager is not good with communications, am I right mum should have a person centered care plan?
The manager appears to think she can change the care plan times etc to suit her not my mum, ? I am not sure now who to go higher up to with this. I found out last week my mum tea time call has been changed to pm instead of pm, nothing mentioned to me.
Any advise would be helpful.

 

[Izzy]

I’m sorry to hear that your mum is facing these problems. I would have thought there should be a care plan for your mum. I understand a face to face meeting will probably be out given the current covid situation but I think it would be reasonable for your to ask for a telephone discussion.

It might be helpful for you to have a discussion with someone on the Dementia Connect Support Line -

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

 

[Jessbow]

Even in Extra care, I am surprised they offer that much support.

How many times a day d they call at the moment, and do you pay for the calls or is it all part and parcel?

It depends to an extent what the calls involve- if its a loo trip and prep and leave a sandwich, does it matter if its 4pm, or 5.30, as long as its a reasonable interval between calls?

With the best will in the world, person centred appears to mean ''to suit Mum''- Which is fine, until there are 10 people needing that much support who all want their tea at 5. Something has to give

 

[Seaholly]

Sometimes though @Jessbow, it's not what is said or done, but how it is communicated that is a real slap in the face when you're a family member who is also primary carer. I have similar issues to the OP with my mum. We have a really excellent team of carers, which we appreciate is the main thing, but the communication from the management is really shocking. Yes, we have to view this in perspective, but it's really not helpful or good for stress levels

Comms with mum's agency has gone like this:
1) I will be your main contact
2) No, I am your main contact now..
3) It will be me that does the visits
4) Hi, I'm someone else, I've come to do the visit.
5) No, X is not at the grade you asked for, but we have this other grade that is basically the same
6) X isn't doing your mum any more, Y is
7) Y really likes mum and will be doing all the visits....
8) Obviously, (really?!!!) Y can't be expected to do all the visits, so - surprise! - we've put Z on the rota and she's not the grade we agreed you'd have...
9) Hi - from now on, I am your main contact - everything from now on will come from me!
10) Hi - person @ No.9 has asked me to be your main point of contact....

And so it goes on! Yes, of course, plans have to change, people come and go, but it would be HUGELY appreciated if for once, when they ring or email, they would just take a deep breath, speak slowly and clearly and actually show a miniscule bit of empathy when they change the script yet again, rather than getting defensive and (a new term) 'carer-splaining' which is actually worse than 'mansplaining'

When you are genuinely anticipating that these could be the final days or weeks, you just want the best for your loved one. Professional communication costs nothing.