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Dementia news item ... Sooooo annoying!

51 replies

membershipcard · 19/03/2013 21:55

Tonight's news item says that people with dementia are going into care too early because carers don't realise how much support is available to keep them in their own home...


My dad cares for my mum and has asked and asked for more support but there is nothing else available in their area other than the 2 (short) days she goes to daycare.

An item on local news to say fantastic news - £1000 will pay for a support worker to visit a family once a week for a year to give dementia support...


A support worker visiting once a week to a carer is nothing when the carer is caring 7x 24 hours a week.

Dementia sufferers are best cared for in heir own homes.

Carers feel guilty enough about putting their loved one into a home without listening to this crap from people who obviously have no experience of caring for a dementia sufferer!

Thank you, rant over Smile

OP posts:
chocoluvva · 20/03/2013 12:03

It's awful - you've every right to rant.

CMOTDibbler · 21/03/2013 11:15

I think many people don't see how hard it is to care for someone with dementia either - they think of a forgetful lovely old lady who likes to chat about the war, not an angry woman who refuses to wash, spits food, and can't string a sentence together.

chocoluvva · 21/03/2013 13:57

I've often thought that looking after someone with dementia must be like dealing with all the difficulties of a tiny baby, and more, with none of the rewards.

CMOTDibbler · 21/03/2013 18:16

What makes it worse than caring for a baby is that you know what they once were, and that the only direction is downwards. If my mum had never been a voracious, critical, reader I wouldn't be worried - but to see her turning the pages with no understanding or retention of what is there (she strangely has still a very strong urge to 'read') is heartbreaking

pansyflimflam · 21/03/2013 18:21

I agree that dementia patients are best cared for in their home, now all they have to do is make provision for tat care and stop talking bollocks!

I am so sorry your Mum is going through and your Dad too xxxxx

Silly fucking people should keep their ill informed mouths shut, they have no idea. I watched my Nana and FIL go that way and it will never leave me because it is so cruel.

Membershipcard, stay angry sweetheart.

LaBelleDameSansPatience · 21/03/2013 21:54

CMOT ::waves:: AP had diagnosis yesterday; think I am still in shock. Now what? (Weeps)

CMOTDibbler · 21/03/2013 22:22

{{{hugs}} Belledame. Well, shes still the same person as she was before the diagnosis. But hopefully the both of you can access some more help with that. Have you read Contented Dementia? Its a great way to think about the way you interact

WynkenBlynkenandNod · 21/03/2013 22:31

It's all a nightmare isn't it Sad. My Mum was diagnosed last Friday. The Memory Advisory person spoke to her yesterday to ask how it went with the Consultant but she had forgotten.

Mum lives on her own but can see it all turning into a nightmare. She's been on Aricept for 6 days and already taken a double dose one day, but refusing it let the Carers who come in daily for her legs give it it her. I spent half an hour arguing that putting a toilet roll on top of an oven with a metal top that gets hot is not good.

Memory Advisory person was saying about Telecare, something I don't know much about yet . The problem is , you get one thing sorted and something else crops up.

fridayfreedom · 21/03/2013 22:32

What the report doesn't say is where this money is coming from because working in dementia care I certainly haven't seen an increase in spending and at the moment with budgets in health and social care being cut and rationed it's just a fight with everyone trying to get the other to use their budget. And bluntly one visit a week is bugger all when you are caring for someone 24 hrs a day !

fridayfreedom · 21/03/2013 22:35

Telecare systems can be useful eg emergency alarms, smoke alarms , door sensors linked to a central control but they do not replace the need for human care and contact.

WynkenBlynkenandNod · 21/03/2013 22:43

Hmm, I had a feeling that would be the case. Mum's on one visit a day but due to be reviewed. I know she can have up to 4 visits a day but can see all kinds of problems cropping up.

Before all this started I said I would never put her in a home. Now I know the time will come when she'll need to as I just won't be able to give the 24hour care she will need without destroying my family. We've already come across SS trying to get the GP to use their budget and we've not had any involvement from outside people until just before Christmas.

fridayfreedom · 21/03/2013 22:55

There may be specialist sheltered housing available but it varies from area to area. It fits between home and residential care.

WynkenBlynkenandNod · 21/03/2013 22:59

Is that Extra Sheltered Housing ? My worry would be moving her somewhere then her deteriorating further and needing to move her again. The Consultant said it would be very stressful for me and that he often has to prescribe AD's for people in my position. The next day I'm pretty sure I was in shock, despite expecting the diagnosis. Think I still am a bit.

fridayfreedom · 22/03/2013 18:36

yes it is extra sheltered housing. yes it generally menas two moves but it can mean that people remain independent for longer before moving into care.
Are there any support services for you in your area, local Alzheimer's society, Admiral Nurses, Care UK, Our Local Community Services has a Carers service.
The message boards on teh Alzheimers website are good to speak to others in your position

LaBelleDameSansPatience · 22/03/2013 18:47

Wynken, expecting it makes no difference. Definitely shock. A friend described it as shock and grieving. Apparently it passes. Hmm

WynkenBlynkenandNod · 22/03/2013 19:14

I just can't imagine her surviving two moves but guess I'd better find out a bit more. Or maybe I can't imagine me surviving her moving twice, the boundaries are a bit blurry.

I've been reading the Alzheimer's boards, they are helpful but depressing reading what's to come. The surgery's Tracker Nurse rang today, she's coming next week. Hopefully she can persuade Mum to let the Carers give her meds, I've bought a box with a combination lock in readiness. We have a Memory Seevice Person who will ring every two months and I can contact any time, plus the Tracker Nurse and she'll be seen by the Memory Clinic, so we are lucky.

Belle, she didn't happen to say when it passes did she ?! I'm self medicating with Mini Eggs having declined an Indian Takeaway for lunch that Mum wanted . She was trying to pay with Euros she found and we fell out about her meds. Just another normal day in my new life. Who diagnosed AP? Are they able to prescribe any meds ?

LunaticFringe · 22/03/2013 19:24

This reply has been deleted

Message withdrawn at poster's request.

LaBelleDameSansPatience · 22/03/2013 20:06

No meds for us. Diagnosed by GP, who said she has 'astonishing insight' into her condition. Which means that, when reminded what her problem is, she tries her hardest to do what I ask her. Obviously good for looking after her, but GP feels that her level of awareness makes it ;far more distressing' for her.

WynkenBlynkenandNod · 23/03/2013 07:05

Oh Belle Sad you can't win with this bloody disease, we're covering both ends of it between us. If they have insight it's harder for them, if they don't it's harder for us.

I think getting outside support can really help if possible but it seems a bit of a postcode lottery. Have you any Admiral nurses locally or a Memory Advisory Service ? Our local Alzheimer's society lady is lovely, I'm going to get her round at some point. All the professionals are saying it's important i am supported a d to be fair I do feel I am now. I hate th idea that you've been given a diagnosis and that's that. Did GP day anything about support for you ?

LaBelleDameSansPatience · 23/03/2013 07:42

GP not, but have contacted the Memory Advisory Service, who will visit in two weeks. CMOT recommended Contented Dementia, which (I paraphrase totally from only having heard accounts - I may be wrong) seems to say don't argue. Could you let her pay in euros and then quietly change it? Obviously wouldn't help with medicatons, though.

WynkenBlynkenandNod · 23/03/2013 08:53

I have Contented Dementia book on my bedside table and do find not arguing helps. I'm only half way through though. The Selfish Pig's Guide to Caring is good as well. With the money she did realise once I pointed out her Euros weren't English money and didn't argue on that one and I made sure she had a couple of £20 by the door to pay as I had to go home. I side step everything I can these days apart from things that are a threat to her health or safety .

We have a lovely lady from the Memory Advisory Service. I do feel I could ring her for advice if I need it. She's rung back after Easter holidays once I've been away as she caught me when I'd just misplaced my phone and wasn't in the best frame of mind to talk about Memory problems at that point ! People are encouraging me to go to the various Carer groups but if I do that I think I'll cry and I'm still quite mortified about bursting into tears over friend in the playground when she only lost her Mum 3 weeks ago.

fridayfreedom · 23/03/2013 12:04

it's ok to cry at the carers groups and lots of people do! People understand and are very supportive, bottling things up means that it will 'explode' at some time.
It's a natural grief process and you need to let yourself feel these feeling before you can move on.

membershipcard · 23/03/2013 15:12

Sad there are too many of us here

but all welcome Smile

OP posts:
WynkenBlynkenandNod · 24/03/2013 12:50

It is horrible we're all having to deal with it Sad Maybe we could keep the thread going as a place to offload ? I have hijacked it, very sorry.

membershipcard · 24/03/2013 20:34

No need to apologise ! Smile

I think it's a good idea to keep this going.

OP posts:
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