How will they tell her she's got it?

[Haveyoubrushedyourteeth]

My elderly mother has been behaving oddly for a few years now, but it's got much worse over the last one.

Whilst she's not struggling to find the right words, she talks absolute fantasy I'd say 90% of the time. If you didn't know her you'd believe that she absolutely was a teacher/nurse/social worker. That she bought her children their houses. That she met a lady who was looking for work whilst on her daily walk, employed her as a cleaner and now she can't find her jewellery. You get the picture.

Last year her anxiety and inability to sleep was getting too much for her, and she quite suddenly became aware of a problem that she's lived with for years. She couldn't settle, repeatedly saying that her problem was ruining her life and she didn't know why she had it (it was a result of a car accident many years ago) She refused to go to the doctors, so I requested a general health check with her GP and they sent her for tests including at DAT and MRI.

We've yet to get the results, but I'm almost certain it's dementia, and I'm absolutely certain that she has no idea that thats what they're going to tell her. I know she's going to be terrified, and I know she's going to look to me to tell her it's going to be OK.

Can anyone please tell me from experience how they deliver the diagnosis? Will it just be "sorry you've got xyz" and then we're left to it? Will they just drop it on her,, or do it softy so that she's not frightened to death?

I'm sorry for waffling, and thankyou if you've got this far. I don't feel anywhere near adult enough to know what on earth I can say to her, or how to put the positive reassuring spin on it that I know I'll somehow have to do. My logic is that if I've got something in my head already prepared then I can keep her as calm as possible for as long as possible..

Creativeconnectionsdementia is really helpful on Instagram. It has lots of ideas how to deal with things. Might be worth having a scroll through!

Sorry to jump on this thread but there are so many knowledgeable people.

My MIL went for tests and scans about six months ago and she told us that she had been diagnosed with 'memory deterioration' but not anything serious.

We were quite shocked that she had been told there was nothing to be concerned about as her short term memory is abysmal. She struggles to cope with a lot of tasks and seems to have no awareness that she has been told something several times. She is almost 80. We were hopeful that a diagnosis would help us plan more sensibly for her future with her.

Could she be confused (possibly covering up) or could the Drs have perhaps been phrasing things in a nice way for her sake?

DH does have medical and financial POA but did not attend this medical appointment as she wanted to go with a friend and we live several hours away and had just had a baby. Now of course we wish he had gone... Can he contact Dr directly without her knowing and clarify?

He did attend an earlier GP appt where she passed the memory test - this was actually rather frustrating as it was/is so clear she is struggling.

@sunandfog please don't apologise. You're very welcome here.

Someone more knowledgeable than me will hopefully be able to help you, but I think in your position I'd be seeing if she might fill in the form her GP will have, to give your DH access to her medical records. Hopefully then you'll be able to look at her notes online and get some clarity as to what's been diagnosed.

My DM was at a physio appointment a couple of months ago. In the car on the way home she was completely misremembering what the lady had said, as in not one bit of the info she was telling me was true. So I'd be inclined to say you may well be right thats she's covering up what was said. This might not be something that she's consciously doing, and it's important to try and remember that because at times it might make you want to scream!

@Exasperateddonut thankyou for your kindness. This is one of the areas of mumsnet that nobody ever wants to be on, but its one of the most supportive. Feeling people understand makes a big difference.

It’s not easy.

I tried to laugh as much as possible at some of the ridiculous situations and arguments I found myself in. Not at DF but with him, in spirit, as he had a wicked sense of humour.

I vented a lot to everyone else, my friends and DH put up with a lot of venting, usually accompanied by a drink.

My lovely GP finally got me an appointment with the surgery’s Social Presciber too, & she was extremely helpful both for me and him.

Don’t be afraid to ask for help.

Re the reduced council tax application/letters, my Dbro (who had P of A with elder sister) specifically asked the council to send any letter about this to him, not to DM, since she’d be very angry/upset at any mention that she had dementia.

But of course, they sent the wretched letter to her anyway, and she opened it. IIRC it said ‘severe mental impairment’ which of course really enraged/upset her.

Thankfully I was able to get over it by saying e.g., ‘For heaven’s sake, they must have mixed you up with someone else, you know what councils are like, all hopeless,’ etc., and I’d get on to them to sort it out.

But of course (thank goodness) she soon forgot about it anyway.

I also want to add my thanks for all the helpful comments and advice on this thread. We might be in a sinking ship, but at least we know where the life rafts are now.

We can all sing together as we go down.

One thing this grim journey brings up is any past trauma that hasn’t healed. I strongly suggest as the carers that therapy is looked into for you. It’s an absolute shit show huh.

Just a thought from me: do you have LPAs? I was so worn out with trying to deal with my mum’s life that I had her post diverted to me. It meant I gained clear insight of what was happening and what my mum need support with.

I'm so sorry to read everyone's experiences of this. My Dad has just been diagnosed with Alzheimers. He started having problems with word finding about 18 months ago and difficulty in cognition and managing day to day life 'admin'. His actual memory seems ok.
He was given his diagnosis at the memory clinic, my Mum was with him. She is a retired mental health nurse so they both knew and suspected what they would be told.
Dad isn't one to talk about his feelings but he seems to have taken it on board. He's taking donazepil now and fortunately hasn't been anxious about his diagnosis but then he has no experience of Alzheimers at all so doesn't really know what's coming. He has a bucket list of things he wants to do while he still can so as a family we are making those things happen over the next few months.
Sadly my parents live 300 miles away and this is on my mind constantly. I would love them to consider moving closer to me but also understand that such a big move now may be detrimental by removing all that is familiar. It's a dreadful disease and I really worry about how my Mum will cope with caring for him as things progress with the rest of the family all being so far away. It feels like we are all in limbo, I wish I knew what to do for the best.

I really worry about how my Mum will cope with caring for him as things progress with the rest of the family all being so far away. It feels like we are all in limbo, I wish I knew what to do for the best.

I think the key to this is getting your DM to be honest about how what she needs help with.

So many times you see that people can't cope and haven't or won't seek help.

Do they have a cleaner and a gardener? They are both a good start as your DM will have enough to occupy her right now, plus it will be two extra people to keep an eye on them.

Are there any services like a Dementia Cafe or Dementia Dance they could go to?

Quick update, just in case anyone comes across this thread and wonders how people are told.....well in our case she wasn't.

Lots of talk about her other issues, lots of well it's good news we haven't found xyz we're going to try this drug for your pain and this for your tremor etc and then in the letter, just at the end, it states vascular narrowing. Nothing mentioned in the in person meetings either and when I tried to steer the conversation towards it in the appointment, they told me that they do look at scans, but primarily its the person in front of them they look at.

Mum wasn't so far gone then and was marvellous at being charming/fooling people. Now we've slipped through the net I think and I'm utterly lost.

I thought I could care for her at home, but after 4 nights of less than 2 hours of sleep due to looking after her and stopping her roaming I feel I've aged 30 years.

I am so sorry. So she hasn't had a diagnosis of a condition at all? Just treatments for various symptoms?

Don't be hard on yourself for struggling to care for her at home. I wouldn't even attempt it for my Mum. I don't think you should ruin your life when, realistically, it's not going to make much difference to your Mum.

Do you have any thoughts on what your next steps are and do you have any real world help- from the NHS or Council and from family and friends? I am not sure what your next steps are, but hopefully someone else can help there.

Hi, she's got problems with her back, her neck, a diagnosis of vascular parkinsonism, compressed discs and fibromyalgia. In the last few weeks she's been getting more and more confused/obsessed and upset.

The other day I had to take her to A&E as she was screaming in pain from the fibromyalgia in her head. Her confusion was undeniable. After 14 hours with her I had to pop to the loo and to arrange to get the children to school, I was absent for 20 minutes and fully explained where I was going. I came back to her sobbing and thinking she'd been abandoned.

They had no beds to admit her, and whilst really helpful in getting an assessment for her mobility needs at home in place, it was very much your daughter will look after you so off you go and good luck.

So here we are. She's currently asleep while I'm on her sofa waiting for her to try and get herself out of bed because she needs to pick up some fluff on the carpet at 2am.

I feel so so sorry for her, but I feel sorry for my children too. My sibling had a lovely trip to the ballet last night, I'd have been thrilled with a worry free trip to the toilet!

I think the next step might be to ring Social Cate and say she's wondering at night and you can no longer look after her. Tell them it's an emergency and she needs looking after today.

I don't know if it will work. They really will pressurise you into doing everything but nobody can survive in that little sleep.

*Social Services