Care needs reassessment - all advice welcome!

[drmclarke]

OK, I'll try very hard not to rant but.....
Mum lives alone in isolated rural area. We're 4 siblings - 1 abroad and invisible, myself and sister both living a significant drive away, and older brother nearby but dual diagnosis (substance misuse+ MH problems) so almost broken by being forced to take the brunt of it all - despite sister and me both saying please don't contact him GP, SS etc seem to do so regardless, meaning I'm frequently fielding loooooonnnnnngggg phone calls from distressed sobbing brother. Looking back at Facebook messages between sister and me I can see we've been doing pretty intensive care for Mum since early 2008 (paying bills, doing all housework, home maintenance, health arrangements), by which time we were both clear she had something pretty serious happening to her memory and behaviour. She's a refuser - always VERY resistant to any help. I finally made the most difficult phone call of my life a little over a year ago and asked for help from her local SS, and she had a care needs assessment a year ago, and a diagnosis of dementia at the same time (which she doesn't know about - I've no idea how she was told other than in some of the unopened letters piled up in her house, but she certainly doesn't seem to know about it). In the past year, we managed to get a half hour a week visit to help her have a bath, but this has now stopped (a whole nother story!) and 3 meals on wheels each week.
Things have deteriorated. Last visit she was "cooking" 6 microwave meals on a hot stove - melting plastic everywhere - so she could feed "the family who are living on the sofa" (actually photos of golden boy invisible brother and family who live abroad). She has hallucinated me being there several times when I'm not, and spends hours chatting with family photos. She wanders (and hitchhikes!) onto the main road despite very poor vision, turning up miles away blue and shivering with cold.
I've finally persuaded her SW to look at updating her needs assessment, and that sister and I should be present at her meeting with Mum.
From the vast, precious store of collective knowledge and experience on this forum, I would be very grateful for any hints, tips, essential things to say/not say to try and end up with more support for Mum.
Thank you in advance....I know I can rely on y'all!

 

[min88cat]

Hi there. I'm afraid I'm going to be pretty blunt here and I'm sorry for being that way, but your post scared me. Your mum is an extremely vulnerable adult and a danger to herself from what you have described in your post. Your brother because of his MH and associated problems is going to find things very heavy going - is it right to let him try and cope? To be honest, for her own safety I would be considering a care home now, where she can be watched 24 hours per day..........

 

[susankell]

Hi there, I'm so sorry to hear about the GP and SS ignoring your advice not to contact your brother. However, is your mum asking them to involve him as he is the "golden boy"? You and your sister need to speak to your mum's GP asap and the SS insisting that you are kept informed. Your mum is certainly a risk to herself and possibly others. Your mum's social worker does not seem "on the ball" to me. Are you sure she is a SW and not a Community Care Worker? In my experience, the latter do not have the expertise to deal with such cases whereas a SW does. Half an hour a week care and meals on wheels seems wholly inadequate to me based on what you have described. You should make notes of all the behaviours you have described and how often they occur. Also, the hallucinations etc. In addition, make a note of the distressing calls you get from your brother and how long they last to show "evidence" of why he should not be contacted about your mother. I know this is time-consuming but if you have a record of dates, times, incidents, etc to show the SW/SS/GP when attending any meetings it will be very helpful.

Good luck!

 

[richardandtrish]

Can you get the GP to insist on a new assessment?

If you do get another assessment, make sure you don't clean up prior!!!

 

[Anongirl]

Hi! Just to say also I would also stress when you get a reassessment that you and your siblings are unable to give the amount of support needed to support your mum. If they think you can manage they are more unlikely to give you help. I have read it on here and also the Alzheimer's Society dementia support worker told me this. You could contact Alz Society actually because the Support Worker also told me she could request a reassessment in my behalf when I needed it.

What particularly concerned me us that you say she "hitch hikes" and ends up miles away, not to mention cooking the microwave meals. I wouldn't be able to rest worrying what is coming next and no one can live like that.

Good luck xxx

 

[drmclarke]

Ah, Min88cat, how I laughed hollowly! Nothing would make me happier than mum being somewhere safe, but as she is violently refusing all help, and is deemed mentally capable to make those decisions, this looks very unlikely indeed. If we can just manage a more appropriate level of home support that would be a good start.
Susankell thank you - luckily we've (fairly) methodically kept a log of our contacts with different agencies and most of the incidents, so I'll make a point of writing this up (in summary form - it stretches to many thousands of words!) to give to SW at the meeting. It will help to do stuff in written form anyway; I don't fancy having to discuss eg incontinence issues in front of my mum. Thanks especially for the point about noting down the impact on my brother, which we hadn't been doing - though I have repeatedly insisted on GP, SS etc not contacting him, but have been ignored. Because of his difficulties he is much more compliant and unquestioning than me, so I can see why they prefer him. SW did identify herself as such, so I'm assuming she really is one, but she hasn't seen mum for a year.
Richardandtrish - yes, I "facepalmed" when my brother proudly told me the last visit from community MH team to mum "went well" because he spent an hour cleaning up before they arrived (doh!) Won't make the same mistake.
Anongirl, sister and I will definitely be strongly emphasising that our ill brother is not able to help at all. To be fair, everyone seems to understand that being respectively 3 and 6 hours' drive away means we girls are not in a position to do day-to-day care, which is why, I think, our brother gets such a raw deal. And of course living in the Middle East means other bro has cleverly avoided any requests for help at all. And doesn't even have to pay any taxes to pay towards elderly care.

Thanks everyone...I'm off to start writing a report...