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Dementia diagnosis - help! - Carers UK Forum

Dementia diagnosis - help!

For issues specific to caring for someone with dementia.
Hi all,

I help care for my aunt. She is 85, house bound due to physical infirmity and is getting progressively more forgetful - she repeats herself every 5-10 minutes, can't remember our family relationships (asked me the other day if a knew her brother Frank - he's my dad) asks me what relationship I am to her (she thought I was her grand-daughter, but she doesn't even have children of her own) and so on. She leaves the gas on, can't remember what happened an hour ago, and most days doesn't know what day of the week it is.

She is also extremely difficult to be with - she is VERY demanding and constantly tells me what i MUST do for her (alot of which I can't do as I'm already caring for my daughter who has ASD and my partner who has Fibro and I work part-time) It's so stressful as she rings me over and over again (the record is about 25 times in a day) and it doesn't make any difference whether I answer or not as she forgets and rings again anyway. I've now had to get a 'caller display' phone so I can screen her calls. I feel horrible doing it but on days when my daughter or Mr CC are really poorly I just can't take the stress of her shouting demands at me.

The rest of my family (mum, dad and sister) have barely any contact with her as she is so mean and rude to them. When they do go to see her she spends all of the visit having a go at them about how they never go to see her.

She has alienated all her friends bar one, who goes in 3 days a week and gets her shopping etc.

We have tried to explain to her that we can't provide the level of support she is demanding from us and that, as she can afford it, that it would be sensible to get some professional help in, but she won't hear of it. She says she doesn't need it and then in the next breath is telling me that i have to go over at least 3 times a week and stay over some nights becuase she gets lonely. I've tried to explain over and over again that I have too many responsibilities already to be able to do this (and I live 45 minutes away) but she then accuses me of being selfish and tells me she doesn't love me anymore.

I contacted her GP about getting some mental health tests done but the GP said they can't do any tests (for PD, dementia and mental capacity) unless my aunt agrees to it, which she won't - can this be right??? I also rang social services but was told I'd have to go through the GP as it was a mental health issue rather than a care issue.

I feel guilty all the time that I can't do more for her, but I have clinical depression and have to look after myself as I have others relying on me. Her tone is such that it's not unusual for me to be in tears after one of her rants on the phone, so I have to pace myself a bit as to how often I can do this.

Any help, guidance, suggestions welcome. I'm sorry to bang on - i think i needed to get that off my chest!!

Thanks for reading.


Hi Cupcake

just seen your post - can't stop right this minute but will come back to you with some suggestions etc later this evening.
Hi Cupcake - I'm back at last. Just got Mum to bed so can concentrate on some suggestions for you.

yes, you (and I mean the family,not you individually) do need to get a proper diagnosis so that you can plan ahead - sort out care package etc. But you are not your Aunt's next of kin (that would be your Mum or Dad - depending on whose sister she is) and they are the one's that need to speak to her GP and Social Services.

Usually a GP will make an informal diagnosis of dementia and then refer the patient to a Geriatric Pyschiatrist, who will determine treatment and refer the patient to Social Services - although once you have a diagnosis you can self refer.

I was able to get Mum to her GP by telling her that she had an appointment for a general health check, when in reality I had pre-arranged the visit with her GP on the basis that we were worried about her general confusion and memory lapses.

If your Aunt is loosing the ability to manage her affairs then you need to get a power of Attorney sorted out - you might find this link useful http://www.direct.gov.uk/en/Governmentc ... /index.htm as it explains what to do if you are worried about someone's mental capacity to manage their own affairs and how to go about getting a Power of Attorney on their behalf.

As I said earlier - although she is your Aunt, you are not her next of kin so it is not your responsibility to take on the majority of her care, especially as you have other caring responsibilites. It is time for the rest of the famiy to step up to the plate and take over - you will have to be strong minded and say that you cannot continue to care for her as you already have enough on your plate.

You all have to remember that her alienating behaviour is due to the illness - I continually have to remind myself of this with Mum. There is lots of interesting information on the Alzheimer's website (http://www.alzheimers.org) and there are free publications explaining about behaviourial changes. Even reading Norrms Blog will give you an insight into how frightening it must be to have dementia - rather like being lost in a strange country and not being able to speak the language.

I hope this makes sense to you as I'm writing when very tired - but if you have any questions don't hesitate to ask Image
Thank you so much for replying after a long day ((hugs))

Sadly, a lot of the behaviour was there before the onset of the dementia. My aunt (she's my dad's sister) has led a very self absorbed life and this is why I think she has so few people in her life now. When I was 9 my dad left and mum and my 2 sisters and I were very poor - no central heating, washing machine, car etc. We were at 3 different schools and my mum was working part-time to keep our heads just above water. At this time my aunt lived just up the road, but offered us no support at all - although she did pop in occasionally to tell us about the lovely holidays she'd been on Image I think the sad truth is that she gave very little to anyone when she was able and is now reaping what she sowed. It's so sad and i do feel for her.

When her husband died (about 16 years ago) she told my mum that, having not had children of her own because 'she didn't want them to get in the way of her holidays', that she would now have to borrow mum's children!! and she wasn't joking.

We did our best to help her through the bereavement - visiting regularly, staying over every now and then, taking her out etc, but whatever we could offer either wasn't right or wasn't enough. There was only so much of this my family could take before this visits started to trail off.

16 years on my dad has alzheimers so can't really manage any next of kin responsibilites, my sister is barely speaking to my aunt because of all the stress she has caused the rest of us and my mum is in her 70's and just doesn't have the energy to cope with my aunt's behaviour. As a rule I go over every saturday afternoon and take her out for lunch, but find it enormously stressful as she spends the whole time complaining about my mum, dad and sister and running them down.

I read the term 'non-compliant' on here last week, and that descibes her perfectly. She refuses to engage in any conversations about talking to the GP about her failing memory, won't attend her GP with me so that we could discuss her current situation, won't agree to a social services assessment, won't consider any home help and so on. I did say to her that I understand that it's all scary but that I would support her and explained that because we have such a small and ageing family it was impossible for her to have the level of care she wanted without bringing in some help - queue more shouting and unpleasantness.

I did call a family meeting for some support - and ended coming away with more responsibilites (for phoning GP, SS etc) as 'I'm the expert' (because I work in support housing).

Following the angry fall out from my aunt that followed that conversation, my family have virtually ceased all contact with her and I feel I'm in an impossible situation - I can't offer any further help and I feel so guilty that my aunt is so cross and unhappy all the time.

Her GP tells me that she has offered my aunt 'tests' but she has refused them and so the GP can't take further action without consent.

blah, blah, blah........


Morning Cupcake Image

Thank you for explaining a bit more - if, as you say, your Aunt has always been 'difficult' then it is unlikely that the principles of 'tough love' would work in this situation and, in any event, she is unlikely to remember that you would have said "enough is enough". My Mum forgets what I've said after 10 minutes !

But I still stand by what I said earlier - in that you have enough to contend with without this added burden and I think you need to contact SS again on the basis that she is a vulnerable elderly adult who needs care that you can no longer provide. I know that Scally would advise you to pass over the problem to SS and walk away altogether, but I also understand how difficult that is to do. However you can't go on trying to split yourself into so many pieces to look after so many people and still retain your own health and sanity.

Dementia is a funny old illness - there are no outward signs of disability for carer's to relate to. I've had a lot of support and advice from our local branch of the Alzheimer's Society and it has helped me to understand what Mum is going through and how she now relates to the world around her - one which she no longer understands and which she now finds confusing and frightening. You should have a branch near you (use the link in my earlier post), so do contact them for further advise on how you can all manage this situation - you may already be in contact with them because of your Dad.

I don't support her GP's view that nothing can be done because she won't agree to 'tests' - if her mental faculties are failing then she is not capable of making that, or any other, decision rationally. It's fear that is stopping her going, fear of being told that she has dementia. I think it's a case of making the appointment and biting the bullet - just take her and present it as a fait acompli - "we're here now so you might as well see the Doctor and be done with it ".

Similarly you need SS to arrange for Care Workers to be calling in on a regular basis - if she has other 'visitors' she probably wouldn't need to call on you so often. I do find that my Mum is not so 'difficult' on the days when she sees people other than just me and my sister - so the social interaction thing obviously works in her case !

I do understand how hard this all must be for you and how you must feel trapped in a never ending cycle of caring; but whenever you can you must make some time for yourself no matter how difficult that may seem.

x x x
Cupcake, I have nothing to offer that hasn't been better said by Susie and Audrey.
Just wanted you to know you are not alone.
Thank you all so much for your help and kindness - I feel sturdy enough to ring the GP again now and try and sort out a referral for the Geriatric Psychologist. In fact, I'll email her so it's in writing -that usually gets things moving a bit quicker doesn't it.

I didn't go today, but instead came home and am lazing on the sofa with Mr CC, who happily has responded really well to the Tramadol prescribed to him yesterday - he got a great night's sleep (first for ages) and is very much enjoying his pain score being 2/10 instead of the usual 9/10 Image

Thanks again everyone, you are all so lovely (((((((hugs))))))))

love cupcake xxxxxxx