Memory clinic fall-out

[barkingmac]

I recently attended a memory clinic with my mum, who is in her mid-70s and has been showing signs of memory loss and confusion for a couple of years now. We were unable to complete the appointment, partly because the doctor we were due to see was off work with Covid, and partly because my mum became very distressed during the assessment (she is adamant that there is nothing wrong with her) and insisted on leaving before the end. Before we left, I was told that the clinic would send a letter to my mum's GP to update them on the appointment and was asked whether I thought it would be a good idea for a copy of the letter to be sent to my mum. I said that, if possible, it would be best not to send it directly to her and (I thought) it was agreed that the letter would be sent to me instead so that I could prepare her before she saw it. Unfortunately, she received the letter through the post today. It describes all of the concerns I discussed with the clinic during the appointment as well as the results of the tests she did complete.

Understandably, she is now extremely upset and angry with me and feels that I have betrayed her. She no longer wants to talk to me or see me. We are supposed to return to the clinic shortly to see the doctor we should have seen last time, but she says there is no way she is going back there.

What can I do? We don't have a diagnosis, I don't know how to access any support and I just don't know what I'm supposed to do next.

Any advice would be much appreciated.

Didn’t want to read and run. Can you explain that part of the assessment is family input and you had to partake ( as Consultant/ dr/ anyone said this would help get your mum right help/ support/ medication)
Then say you were asked very direct questions and could not lie

Ultimately she is equally upset at content than you ‘betraying her’
And if she lacks insight there is no way round it. All you can do is acknowledge she is hurt

I know getting help from GP’s is like searching for gold- but could they explain how process works and maybe reassure her re content/ emphasis on looking help for her.

Re taking her back- when will that be? Could it take place in different clinic?
Perhaps the gap in time will soften her feelings

Re getting help can you ask GP to refer Maud for social services as your mum is vulerable adult and care may be needed ( that’s assuming carers will be needed)

Perhaps Admiral dementia hotline? Although I know it is pre diagnosis

Take care

Good luck

You don’t need a diagnosis to access care. For care, you request a Care Assessment from Social Services at her local council.

Support and advice is available from Age U.K. and alzheimers.org.uk, and again, you don’t need a diagnosis to access their helplines, websites etc.

The problem you have is that if she’s in denial about her difficulties, she’s probably not going to accept any external help at the moment, especially if she’s currently not talking to you.

Give her time. Things will probably need to get worse for her before she admits to needing some help.

In the meantime, do your research.

Cleaner, meal delivery service (e.g. Wiltshire Farm Foods) and emergency alarm call system are often the first steps towards getting some help into the house - less intrusive than daily carers initially for someone who’s trying to cling on to their independence and privacy.

Hi, didn't want to read and run but I sympathise with what you are going through.

My mum was very reluctant to go to a memory clinic but we did get as far as a 'mixed dementia' diagnosis. But we weren't allowed to talk about it directly to her as it made her very upset.

You might be in the same position for the long haul if she is in denial. So you may need to think of ways to charm and cajole her into doing what's needed.

Please look into sorting your mum out with a power of attorney while she is still able to consent. Sorry if that is hard to read.

I'm sure she'll want to speak to you again soon.

Someone above mentioned a meal delivery service... I would look into Meals on Wheels. If she qualifies, it would be someone going in daily to check she's OK, as well as providing her with a cooked meal.

We only got mum to her appointment as she was determined to prove everyone wrong about her failing memory.

What did you hope to gain from the assessment.
I'm happy to be corrected but as far as I'm aware there is no medication that helps much.
Was it to convince your DM she needed carers?
Or to get help from social services?
I ask because maybe the assessment isn't needed. And the GP or Social Services can move forward with support without it.

By the way, despite an assessmentof Alzheimers my mum is still convinced that everyone else is wrong and her memory is fine so it may not be that much help.

Talk to her (or your GP) and ask if there is a dementia wellbeing community service in your area. They can help prior to a diagnosis and provide support to family

@Polyanthus2 there are medications available. No cures, but medicines that can slow the disease's progress. It's best to take them as early as possible for maximum benefit.

So sorry this happened

However

* I said that, if possible, it would be best not to send it directly to her *

Given how much you did NOT want her to see the letter. Probably best that when they asked you didn’t respond with “probably” and instead

“100% definitely please send to me and NOT my mother”

When my MIL refused to attend they sent someone to the house.

My father had vascular dementia

All I can say is that in all likelihood this experience will soon become cloudy and confused in her mind, and eventually she will forget.

It is the one tiny tiny tiny silver lining of memory loss. That it does allow for mistakes to be made but then to move on from them

bide your time, see if another family can get hold of the letter so that she doesn’t keep reading and reminding herself of it, and then get in contact and talk as though nothing happened or that it wasn’t a big deal and all moved on from it

What did you hope to gain from the assessment
One very practical and helpful thing my parent got due to the diagnosis was a full Council Tax exemption, not the point of the OPs post but may be useful to know.

@Polyanthus2

What did you hope to gain from the assessment. I'm happy to be corrected but as far as I'm aware there is no medication that helps much. Was it to convince your DM she needed carers? Or to get help from social services? I ask because maybe the assessment isn't needed. And the GP or Social Services can move forward with support without it.

You don’t have experience with this do you?

The assessment is the gateway which opens up any and all support

Without the assessment - the door remains firmly shut

You could always ask social services for an assessment if she’s not engaging with the process.
Does she realise that not engaging with the doctor will make you all think there’s a problem ?
My MIL passed the memory test with the GP a couple of times when we could see there was a problem, but eventually she failed it. You’ve just got to keep going unfortunately.

God what a terrible experience for you all.

Can I just say loud and clear to you that you were doing your best to help your mother. I know you know that, but when things collapse in a heap like this, you can end up questioning yourself.

Frankly I don't think a cancer clinic would operate this way if they could help, ie sending the patient a list of every single issue and embarrassing symptom which hadn't been discussed with them (obviously in theory it has been discussed with your mother but with memory difficulties- newsflash - they won't remember . I think memory clinics should have a principle that there should always be a follow up with the GPand that's where the information is discussed. God knows how that would be done in the new 'patient focused' (actually procedure focused) NHS but that's how it should be.

What to do now? Well, time is a healer. Let her be for the moment. Is there zyone else in the family or a family friend you could prime to drop by soon and spend some time with her? Cheer her up by proxy as it were.

Just to say that I ended up having to do the MMSE with my mother in lockdown (she aced it - of course) and she got so distressed at even the idea if a memory clinic appointment that I pathetically abandoned the whole idea, but even the fact that she'd been referred to it at all was taken later on as part of the evidence that led to a dementia diagnosis. Not that everyone that gets referred has dementia, but that there had been concerns about memory for a long time.

I'd 'play along' with her- say there were misunderstandings, say you cooperated with the assessment because you thought it was the best thing to do, suggest she go back to 'prove them wrong', as a PP says.

But most importantly, play along with her on day to day needs- 'I know you can do it mum, but let's book a cleaner in case one day you feel too tired'
'I know you don't need it, but you'll get to know the team and that will be handy if you do need it one day'. 'Yes, you can do it on your own, but why should you? Why not take it easy sometimes' etc.

And do things a little at a time 'let's try it for a month. We can always cancel it if you don't like it' etc.

My mum has been diagnosed with Alzheimer’s. She can’t bear to hear the word so we never use it and have asked doctors, carers etc not to use it as she finds it distressing. She’s quite happy to accept she has ‘memory problems’ or a ‘bad memory’ so this is how we refer to it.

One advantage of her condition is that things that upset her or make her cross are forgotten very quickly. Your mother probably isn’t at this stage yet but it does make things easier.

“You don’t have experience with this do you?

The assessment is the gateway which opens up any and all support

Without the assessment - the door remains firmly shut”

That is not my experience. My father has never had a dementia diagnosis. It hasn’t been a problem accessing care. The “gateway” is not being able to cope.

“And if she lacks insight there is no way round it.” She probably doesn’t lack insight. She’s probably terrified.

You were doing your best to help your mum, don't beat yourself up over this. This will still be upsetting you long after your mother has forgotten about it. Every couple of months mum would say "I really must speak to the doctor about my memory" except she'd already done that. The visits from the nice lady at the memory service, the brain scan, the diagnosis, the medication - none of that had happened for her. You may not believe me because you can see how angry your mum is right now - Mum was absolutely raging at me one day, so mad that I said we'd talk about it the next day when she'd calmed down. The next day, it had never happened. Make sure the letter is filed somewhere that she's not going to stumble across it and be upset again.

For us assessment was worth the effort, it made applying for attendance allowance easy, there was a council tax rebate, I could visit hospital when there were no visitors allowed. It also made me get my act together and get the power of attorney sorted out, the last seven months of her life would have been even more of a nightmare without that. MIL refused to co-operate, had no formal diagnosis and got none of that. Social services will do an assessment based on needs, it doesn't matter whether there is a diagnosis or not.

Leave it a couple of days, do what you need to do to mend the relationship (I was trying to get you some more support mum in case I break my leg or something) and don't mention the assessment. When things have settled down you could ask the GP to get the ball rolling again, during covid the memory service visited, you could ask them whether they would come out. It might be easier in familiar surroundings.

You could ring the memory clinic and tell them what happened and that you don't know what to do, ours was incredibly helpful. At times when everyone else let me down and I had no-one to turn to they came through for me. They ran training for carers and had a party pack of inches of literature on local services (at the time all shut for covid). You are not the first person this will have happened to, they will have seen it before.

I'll end where I started, you were doing the best for your mum, don't beat yourself up over this.

*The assessment is the gateway which opens up any and all support

Without the assessment - the door remains firmly shut*

That is not correct, please ignore that post.

Op

You’re at the start of the journey

I can’t recommend more highly Wendy Mitchell, Somebody I used to know

I wish I had read this whilst my father was alive.
It is a tremendous insight in to what is endured by sufferers and how we, as family, can help.

@HeddaGarbled

*The assessment is the gateway which opens up any and all support

Without the assessment - the door remains firmly shut*

That is not correct, please ignore that post.

I was explicitly told this by bucks social services

Without the assessment, which is an objective assessment of the situation, it is all but impossible to access nhs treatment and support.

Of course private is a different matter

It is really upsetting isn’t it? My DF had his on the phone during Covid. He was incredibly upset - as were we all as they asked stuff about whether he’d ever been suicidal (answer was yes because he’d ‘betrayed my wife ‘- he hadn’t - he thought he’d had an affair with an old friend who is most certainly non the other side of the world and has been for many decades) and his childhood - which was a busive and so he had to go through it all with them :-(

For all that is good in the world pleaseget the powers of attorney set up before she loses capacity. This is the most important thing now.

Best of luck