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Getting no where with diagnosis or SS - any advice?

(7 Posts)
birdybirdbird Mon 06-Mar-17 19:07:33

I have crossed posted this in the dementia board but there seems to be a bit more traffic here - hope that is ok.

Quick bit of back round - My Mum (58 - so not even technically 'elderly') has a rapidly declining memory. Some of this is caused by historical alcohol abuse (sober for 3 years) but it is getting worse suggesting that something else is happening alongside this. She has a whole host of other medical issues - deaf, epilepsy, bipolar and is currently going for weekly physio to try and prevents falls (they think she may have osteiopairosis). I live a very long way away and our relationship is pretty strained. She lives alone and has no real family or real friends nearby.
I first went to GP and her psychiatrist about memory issues in October - nothing happened. After a stressful December with harassing neighbours, the mental health team have stepped up a little with a great psych nurse visiting her weekly.
Saw the neurologist a few weeks ago - I thought this would lead to a dementia diagnosis but instead he wants a brain scan (6 week waiting list), then back to see him in 3 months.
Meanwhile, Mum is getting worse and worse - she really cannot cope alone and living with me is not an option for my own mental health and she also wouldn't want to move away from her local area. There's so much I could write but... can't cook any more than a ready meal, frequently forgets/can't be bothered to cook, leaves the hobs on, forgets to takes meds massively increasing her risk of epileptic fits and a subsequent fall, misses appointments, gets lost in town (most recently some strangers actually drove her home as she was so confused and acting oddly), cannot manage finances (masses of debt, keeps spending and spending - I am in process of sorting this), struggles with the stairs, can't change bed herself, can't manage personal care (cutting toenails, struggles with shower etc)...

Where do i go from here!? She desperately needs care - be that some kind of assisted living or moving into a residential home. We jointly own the house and have done for some time. She is keen to go into sheltered housing, but I believe she needs more care than this would provide, and we are both happy to sell up. However, I feel I need to do this with LA and SS backing so they will take over financing once the money runs out (which won't be long ad due to her age she might have many years left to fund!) Social services are very reluctant to step in due to her young age. They seem to want a concrete dementia diagnosis but she really can't wait three months for that and it might not even come then (possibly issues have been caused by the epilepsy rather than a dementia per se).
I really am a bit of a loss about what to do so any help or suggestions would be great. TIA and sorry for the huge post!

Needmoresleep Tue 07-Mar-17 10:37:38

Nothing to add other than it sounds awful.

And good on you for trying to help, despite damage her alcoholism will have caused to your relationship.

A few random comments:

1. She will probably be too young for elderly sheltered accommodation. Age restrictions usually start at 60 or 65.

2. Can the GP speed up the process. My mother had quite a quick scan. We were told that she should come along, but that should there be an emergency case, they would get priority and she would be sent away. In any event I would write to the GP, explain recent problems and ask if he can do anything to speed up the process and encourage SS to engage.

3. There is a limit to what we can do. I think those of us who have difficult relationships with our mothers (or fathers) step in partly because we want to change the past. We can't. You can't make good the bad decisions your mother has made in the past. She has to live with the consequences. It can be important to be the better person and to do what you can to break a cycle, to be there and to make her life more comfortable than it might otherwise be. But you probably can't do much. The speed of her decline suggests something nasty.

4. Get her to sign a POA asap. Pre diagnosis. You can do it yourself. You will need it.

Take care, and do join us on the longer thread.

birdybirdbird Wed 08-Mar-17 17:18:13

Thank you so much Needmoresleep, your response made me cry! There are several people in my life who think I should just rush to have Mum live with me and just don't seem willing to accept how disastrous that would kid be given our history. I will check the longer thread too!
I went to the gp with her back in October and he was pretty useless. Just said that her mental health team would go it all. Perhaps I need to get back in touch and push to him that she's seriously declining and that he needs to act - safeguarding, duty of care etc etc. Thankfully I do have poa- medical and financial. Came through in February!

thesandwich Sat 11-Mar-17 11:38:32

So sorry birdy and echo everything nms has said. Do what you can but look after yourself. Good luck

Ciutadella Sat 11-Mar-17 11:46:47

What a difficult situation for you, many sympathies.

Is there any way you can speak to or write to/e-mail the psych nurse - she will have to observe confidentiality but may be able to listen to what you say, and may be able to speed things up if things are getting worse quickly? (Not sure what the 'line of responsibility' is, but she may have some input to speeding things up?)

If you get to a stage where you think social services must step in immediately, i think there are a number of pp who have experience of this, so with luck they'll see the thread and add their advice. But do 'bump' the thread after a few hours if you haven't had replies.

Ciutadella Sat 11-Mar-17 11:51:46

And yes I do echo Nms's recommendation to join the longer thread as it has lots of advice about how to protect your dparent as much as possible - much of the great advice being from Needsmoresleep!

Like protecting against scammers, registering for alerts with Land Registry and so on.

birdybirdbird Mon 13-Mar-17 19:03:47

Thank you for the extra advice and support. I'm slowly reading through the longer thread and getting some good tips! Had a bit of an update - mostly a positive one - so thought I'd give this a bump!

Mum admitted to hospital on Thursday lunchtime after having a fit. They wanted to discharge on Friday morning, I said no way - she's not safe! They organised 2x daily visits with re-enablment team and sent her home on Saturday afternoon. BUT, they NEVER delivered her meds and carer did not think to chase this with hospital when they came round!! So, 5 hours later she was back on the ward having had 3 more seizures. angry This has happened twice before at this hospital, quick discharge learning to re-admission the next day and repeat!

They tried to discharge at 4 o'clock today - I refused on safety grounds given previous pattern of lots of seizures in quick succession. Yes she's well now, but that's because she's surrounded by people who can make sure she eats, regulates her water intake (this has led to seizures in the past) and takes meds 4x daily. They grumpily said they'll keep her but "will be reviewing tomorrow". At 5 o'clock I got a call from her lovely mental health practitioner - she also insisted they didn't discharge and that they need to carry out a full social care assessment. Apparently ward sister did not know about Mum's memory issues/confusion, her history of falls and even asked if/what medication she takes for her epilepsy - have they even read the notes the same ward wrote on Friday?! No wonder they dots aren't joined and this is all happening so slowly! Mental health lady said I should try to continue blocking discharge until the assessment is done but quite possible that Mum may discharge herself in meantime...

Also, neurologist finally wrote to GP stating 'memory issues of an organic nature - cause unclear and to be investigated' - feel this is a diagnosis of sorts and step in the right direction!

There's still a long way to go and I'm this will all go tits up at some point. Mainly when mum regales the social care team with fantastical tales of things she's apparently capable of... Or when they call me to discharge tomorrow and I'm teaching so can't answer my phone.... But right now I'm thinking positive and about to have a gin&T!

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