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..

[Pieceofpurplesky]

Hi sorry to hear your news. My DM has dementia. When we went to the clinic they sat us down and explained but mum didn't really listen. They were lovely and gave leaflets, referrals etc. She has no clue she has it and we just don't mention now. It's really hard OP and I offer a handhold from here (mum diagnosed a year ago)

[mfhtoeh]

Im sorry to hear about your mother.

My father went to the stroke team for black toes (clot in them) but was diagnosed with vascular dementia at that appointment.

It was a blessing to the family - we could never have taken Dad to the GP for a dementia diagnosis but it’s clear to us he has it and increasingly to him too (despite huge denial). He is deteriorating fairly rapidly compared to even 6 months ago.

He has a history of regular TIAs/small strokes (not as transient as we would like!)

The wording was ‘Mr xxx, you’re clearly an intelligent man. You had a good job. The answers you’re giving the the questions I’m asking you are not the speed, content or level I would expect. You clearly have early stages of vascular dementia’.

In the car home he said to mum ‘it’s because I can’t hear! No one understands I have hearing aids’. He was in denial.

It’s a tough journey for all the family. My heart goes out to you all.

To answer your question another way, I think the Dr diagnosed it in a way appropriate to the person and situation. However it will, as always, depend on the actual doctor and also your perception as what one person thinks is kind another person might find patronising. It’s tricky.

[Haveyoubrushedyourteeth]

Thankyou such a lot for replying. I've never posted before, but I'm losing sleep over it so really appreciate you sharing your experience.

I'm hoping she won't really take the enormity of it in. She seems to remember the feelings conversations give her, rather than the content. So if they're gentle and kind that'll make all the difference.

I'm so scared, I can't bear the thought of her being scared too.

[mfhtoeh]

@Haveyoubrushedyourteeth

Thankyou such a lot for replying. I've never posted before, but I'm losing sleep over it so really appreciate you sharing your experience.

I'm hoping she won't really take the enormity of it in. She seems to remember the feelings conversations give her, rather than the content. So if they're gentle and kind that'll make all the difference.

I'm so scared, I can't bear the thought of her being scared too.

Do you know the name of the doctor you’re going to see? Can you call their secretary & explain it (briefly) beforehand?
That might give you peace of mind?

[YouCantTunaFish]

I took my Mum to her appointment and she was told the results of her scan and cognitive tests and that she had Alzheimer's. She was asked if she had any questions- no. They asked if I had questions as they knew I had power of attorney- I did! At the end of the appointment she was asked again if she had questions and she asked who had Alzheimer's. I laughed tho it killed me inside. She was a crisis admission to a care home three weeks later and is deteriorating rapidly. Fucking terrible disease

[Haveyoubrushedyourteeth]

@mfhtoeh unfortunately no. She refused to let me have access to her GP notes to be able to find anything out, so I'm relying on her to give me the information, and what I'm getting makes very little sense.

It wasn't that she was hiding anything she told me, it was "because I don't want my notes up on the Internet for everyone to see my business" I couldn't get through to her that's not what it meant.

She believes that she has an appointment on a date that does make sense (ie a weekday) and its a different department to where she was initially referred (so it seems shes spoken to someone) but has no information as to which doctor or hospital, or what time.

[Haveyoubrushedyourteeth]

@YouCantTunaFish I'm so very sorry, that sounds incredibly hard.

[Ladamesansmerci]

I'm a mental health nurse working with older adults and deliver dementia diagnosis lots. How I do it very much depends on the person. Families will often say to me they don't think their relative will cope with knowing, and that's okay. She will need to do a memory test, and I usually start by discussing the results of that and th head scan e.g. 'your head scan shows some changes to your brain which explains why you've been struggling with...'. Then I'll comment on the memory test and talk about which areas they've struggled with and what that means, but also which areas they've done well on. If I know someone will struggle with it, I won't use the D word. No matter what, I always emphasise that dementia is not the end of the world and that you can still live a good quality of life. I tend to highlight what the person is still doing well and enjoying. If the person isn't too advanced, they can also be signposted to therapy to process their feelings around diagnosis.

Obviously if you have someone in the early stages of dementia who is blatantly aware they have a memory problem and it's not very far progressed, my professional duty is to be honest. What I won't do to people is lie to people if they ask me about progression and the reality of what they might struggle with down the line.

Your mum's capacity (ability to understand information, weigh it up, retain it, etc) will be considered, and for some people's it's deemed in their best interests for only family to know if it will cause a lot of distress.

[Haveyoubrushedyourteeth]

@Ladamesansmerci that's very helpful thankyou.

[YouCantTunaFish]

@Haveyoubrushedyourteeth
We had two years of me desperately trying to get her help and I was on my knees with living over an hour away, husband that worked shifts, young kids and terminal illness for FIL. To be fair once help was organised it worked well and it's the best for her. Doesn't stop the guilt tho. Sending an unmumsnet hug to you.

[YouCantTunaFish]

@Ladamesansmerci
The nurse and consultant were very kind and I thank you for that. Tho my Mum had no understanding, they were brilliant for me and so kind before, during and after the appointment. I wouldn't have got through it without you and your colleagues

[Haveyoubrushedyourteeth]

@YouCantTunaFish sending you a hug right back.

I've got a sister who is in absolute denial. Her solution is that we tell mum that the doctors are wrong and incompetent! I've a feeling it's the kindness of strangers that will be a real lifeline on this bloody awful journey.

I too have children, but they're thankfully old enough to understand that I'm being pulled in all directions. I can't imagine how hard it is for you with young ones.

[YouCantTunaFish]

@Haveyoubrushedyourteeth
I too have a sibling that was in total denial as he lives 500 miles away. Apparently she was fine, lonely, it was a Covid problem etc etc. Not exactly a great help but I flipped out on him when she was admitted and to be fair to him he's apologised and stepped up to deal with all the paperwork/ stuff that can be dealt with online / or on the phone and I deal with the practical stuff. He just couldn't deal with it and now he is, it's so much better. Hopefully your sister will realise she has to deal with it and you can support each other

[GETTINGLIKEMYMOTHER]

My mother was told by her GP and appeared to accept it (GP to her was = to God) but given the nature of the disease, had completely forgotten by the time she got home maybe 15 minutes later.
If we tried to remind her, she would very crossly deny that there was anything wrong with her, because at any given moment she simply couldn’t remember that she couldn’t remember anything.

So we soon stopped. Just wasn’t worth the aggro.

[GETTINGLIKEMYMOTHER]

Just to add, in my DM’s case, and I dare say in many others, it’s not ‘denial’ as such, but as per my pp, zero short term memory means that they can’t remember that they can’t remember anything.

As an example, the day the penny really dropped for me (sinking heart since we’d been through it all before with FiL) ) that it was dementia and not just old-age forgetfulness, was when my formerly very financially savvy DM phoned her bank about something - and could not remember, literally the instant she’d put the phone down, what they’d said.

Her former self would have been in a terrible tizz about any such lapse, but she forgot about it almost immediately.

[NoBinturongsHereMate]

As PP have said, the details of how they do it will depend on both the individual doctor and their assessment of how she is likely to take it.

But however it's done, it shouldn't just be drop the info and.leave you to it.

They are likely to refer to the memory clinic, which offers both more detailed testing and follow up support. And either they will refer or you can self refer to adult social services and the Alzheimer society (despite the name, they deal with all types of dementia) for further advice, assessment of care needs, any home adaptations she may need (some types of dementia can also cause physical problems with things like balance).

You won't just be left to get on with it alone.

[Haveyoubrushedyourteeth]

Thankyou all for your help and reassurances.

We have days where she seems almost normal, then I start questioning whether I've imagined the whole thing. I know deep down that's not the case, but I guess it's human nature to hope it's all been a misunderstanding!

At the moment all is calm, but It turns on a sixpence.
A few days ago I was being shouted at for confusing her because I'd knocked down walls in my house without asking (we haven't changed or knocked down anything) Shes convinced my house is hers and she grew up here (not the case at all) I know you're meant to agree with everything they say, so I did, but isnt it so hard when it leads to a full venomous rant for something you haven't done.

[FiveFoxes]

My Mum was diagnosed in the past week. She had noticed she struggled remembering things and finally agreed to see the GP. The GP did a mini memory test, and then referred her to the memory clinic. They came round and did the full ACE 111 test and said at the end "if you are diagnosed with dementia...". At which point my Mum had a full on breakdown. The nurse called me later to see how Mum was (she had prayed about it and calmed down) and suggested that she would refer to it as her 'memory problems' in the future. After a CT scan, the nurse came back to prescribe the medication for Mum's "memory problems". Later in the week, I was emailed a copy of the letter with her diagnosis of Alzheimer's. Luckily I was prepared for this after FIL having it and having done a lot of Googling trying to find anything else it could be
Apparently I will be contacted by someone for support and advice.

It's awful 😞

[Haveyoubrushedyourteeth]

@FiveFoxes I'm so sorry to read that, it must be awful for you and her. Sending a hand hold.

[FiveFoxes]

Thank you. I was trying to be reassuring to you that they can not tell your Mum if you think it's best and can use euphemisms (memory problems, for example).

The nurse who upset my Mum in the first place was a trainee and the whole experience was upsetting so that didn't help. I complained and a nice nurse came back and all is fine now.

She's been on the medication for a week and seems to be doing ok at the moment and better than usual although I am not sure if that's the tablets.

Good luck with your own Mum.

[Exasperateddonut]

I don’t know what to say apart from I’m so sorry you’re also on this horrid path. We’re still a year away from the memory clinic appointment and the decline has been awful. Apparently you just have to get on with it. I’m so sorry.

[Haveyoubrushedyourteeth]

Thankyou @Exasperateddonut sending you a hug, it's a really horrible club to be in. I stupidly thought it was just being forgetful, God how I wish it was 😔

[Pieceofpurplesky]

Hi @Haveyoubrushedyourteeth my mum is confused about where she lives too. She's convinced she has another house and has left all of her stuff there.
We have good days and bad days and she too can turn in a second. She can be totally fine and then lost. I find that the busier she is the better she is. Company is great.

One of the great charities we have help from is 'Shared Lives' and a lovely and amazing woman comes every Wednesday for three hours - takes mum out or they watch a movie. It's great for mum and takes some pressure off both Dad and I.

[BettyOBarley]

@Pieceofpurplesky

Hi sorry to hear your news. My DM has dementia. When we went to the clinic they sat us down and explained but mum didn't really listen. They were lovely and gave leaflets, referrals etc. She has no clue she has it and we just don't mention now. It's really hard OP and I offer a handhold from here (mum diagnosed a year ago)

This has been exactly our experience with my DM too (diagnosed with Alzheimer's a few months ago). She doesn't understand the diagnosis at all and we just don't mention it, which feels very odd, but seems to be for the best.
She doesn't know why she goes to these appointments or what they're for or why she takes the tablets.
She's never been upset / worried / distressed. The most she says after the appointments is "I'm not mad you know" and then within a couple of hours she's forgotten all about it.

[CadyEastman]

I stupidly thought it was just being forgetful, God how I wish it was

You're not the only one. We naively thought the same, followed by a very steep learning curve.

Does she have a SW yet and have you applied for Attendance Allowance?