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Some advice please...

Gingerpinks

Registered User
Dec 14, 2019
10
Hi, my MIL lives with us as we had noticed that she wasn’t coping on her own. She’s been here for 10 months and myself and my husband have seen so many incidents of memory loss, confusion, struggles with new tasks, leaves shopping at the shops, money in the cash point, not participating in conversations or social events etc. She has lost three stone and has a massive sweet tooth and no sense of smell.
I have been taking her to the doctor to get various test done (her daughters will not accept that there is anything wrong with her and make excuses for every symptom and don’t support us in any way)
We finally had the Mental Health nurse come out yesterday to do some tests. Frustratingly my MIL was bright as button and scored 82/100 and the nurse kept commenting that she was so quick and doing fabulously well.
I’m now concerned that the nurse will report back that they don’t think there is a problem or that I’m seeing a problem where there isn’t one. Can someone with some form of dementia have really good days and then really bad days?
My husband works away during the week so I am left to care for my MIL along with her three dogs and my two young children and I feel that I need a diagnosis so I can prepare myself for what’s coming if that makes sense.
Thank you if you’ve read this far.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,386
Nottinghamshire
Welcome to Dementia Talking Point @Gingerpinks

Your MIL was in what we call “hostess mode” when she did the test. It’s very frustrating because it makes the person seem much better than they actually are. Good days and bad days are also common. This all makes diagnosis difficult so make sure that you let the doctors know what you have noticed in her behaviour.

My dad always scored very well in the tests right up until the late stages unless he was asked what day/month/year it was then his confusion became apparent.

I hope you manage to get that diagnosis but you don’t need one to get help put in place for your MIL - her needs are the same with or without a label. I’m glad you’re thinking ahead but try not to get sucked into becoming your MILs only carer it’s too much for one person to handle alone.
 

canary

Registered User
Feb 25, 2014
12,247
South coast
Hi @Gingerpinks , your mum would have had the Addinbrookes Cognitive Examination (ACE) test.

A score of 88 and above is considered normal, between 87 and 83 is borderline and 84 and below is considered abnormal. So, on a good day, in hostess mode, she still scored in the abnormal range. I should imagine that the examiner took great pains to hide from your mum that she wasnt scoring high enough, so that your mum didnt feel that she had failed. Are they organising a scan?
 

Gingerpinks

Registered User
Dec 14, 2019
10
Welcome to Dementia Talking Point @Gingerpinks

Your MIL was in what we call “hostess mode” when she did the test. It’s very frustrating because it makes the person seem much better than they actually are. Good days and bad days are also common. This all makes diagnosis difficult so make sure that you let the doctors know what you have noticed in her behaviour.

My dad always scored very well in the tests right up until the late stages unless he was asked what day/month/year it was then his confusion became apparent.

I hope you manage to get that diagnosis but you don’t need one to get help put in place for your MIL - her needs are the same with or without a label. I’m glad you’re thinking ahead but try not to get sucked into becoming your MILs only carer it’s too much for one person to handle alone.
Thank you for your reply it helps to know that ‘hostess mode’ is a thing I thought I was going potty on the days when my MIL is sparky and with it.
I think I need the diagnosis so I can understand what the future holds really and be somewhat prepared for what’s to come as I presume different issues show themselves in different ways as they progress.
Sorry about your dad x
 

Gingerpinks

Registered User
Dec 14, 2019
10
Hi @Gingerpinks , your mum would have had the Addinbrookes Cognitive Examination (ACE) test.

A score of 88 and above is considered normal, between 87 and 83 is borderline and 84 and below is considered abnormal. So, on a good day, in hostess mode, she still scored in the abnormal range. I should imagine that the examiner took great pains to hide from your mum that she wasnt scoring high enough, so that your mum didnt feel that she had failed. Are they organising a scan?
Thank you so much that’s so good to know, it’s hard to tell if the nurse was being positive,like you say to hide it from my MIL or because she was actually doing really well. Yes we have a MRI scan booked for January, is the scan the definitive diagnosis?
 

canary

Registered User
Feb 25, 2014
12,247
South coast
Yes, @Gingerpinks , the scan will definitively confirm the diagnosis. The ACE only shows that there is a problem (the nurse would have known that your mum wasnt actually doing that well), the scan will pick up the reason.
 

Lawson58

Registered User
Aug 1, 2014
2,148
Victoria, Australia
And it's important to remember that the memory tests are firstly a guide that something is amiss and secondly that the tests can be used as a baseline in the future to find indications of further losses in memory. Your input as to her behaviour, loss of weight etc are very important in getting a diagnosis and also help for your MIL so please keep a little book of the things she does.

It can be disconcerting when someone flips the switch and goes into hostess mode but you'll soon recognise the signs and get used to it.
 

Gingerpinks

Registered User
Dec 14, 2019
10
And it's important to remember that the memory tests are firstly a guide that something is amiss and secondly that the tests can be used as a baseline in the future to find indications of further losses in memory. Your input as to her behaviour, loss of weight etc are very important in getting a diagnosis and also help for your MIL so please keep a little book of the things she does.

It can be disconcerting when someone flips the switch and goes into hostess mode but you'll soon recognise the signs and get used to it.
Thank you, I always feel so bad having to say the other things that have been happening (like pouring boiling water from the kettle over her fingers to see if it was hot) as she visibly shrinks and then obviously becomes defensive or makes excuses.
She went out with a friend for the day recently and came home so bubbly and excited, not like we have seen her in such a long time saying she had had such a good day and not forgotten anything, remembered everyone’s names etc and then when I saw the friend she said she was going to call me as she was so worried about my MILs appearance (weight loss) and her behaviour which she described as erratic.
 

canary

Registered User
Feb 25, 2014
12,247
South coast
Yes its horrible having to say in front of people what they are really like and all the problems that you have noticed.
What I and many others on this site do is write a letter to the doctor explaining what its like and send it in in advance, or else pass it discretely to the nurse when you arrive, but before the appointment.
 

Gingerpinks

Registered User
Dec 14, 2019
10
Yes its horrible having to say in front of people what they are really like and all the problems that you have noticed.
What I and many others on this site do is write a letter to the doctor explaining what its like and send it in in advance, or else pass it discretely to the nurse when you arrive, but before the appointment.
That’s such a good idea and makes perfect sense, thank you so much x
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,386
Nottinghamshire
@Gingerpinks

I used to hand over a letter to the doctor or nurse but I would also try to sit slightly behind dad during the appointment so I could nod or shake my head to what he was saying so they got the true answer - not just dad’s version.
Dad never caught on..
 

Gingerpinks

Registered User
Dec 14, 2019
10
@Gingerpinks

I used to hand over a letter to the doctor or nurse but I would also try to sit slightly behind dad during the appointment so I could nod or shake my head to what he was saying so they got the true answer - not just dad’s version.
Dad never caught on..
Thank you, the doctor on previous occasions has looked to me for acknowledgment on certain points but the nurse that came out to the house didn’t really seem interested. I shall endeavour to write letters or as you say sit where I can agree or disagree with what’s being said.
 

Lawson58

Registered User
Aug 1, 2014
2,148
Victoria, Australia
Thank you, I always feel so bad having to say the other things that have been happening (like pouring boiling water from the kettle over her fingers to see if it was hot) as she visibly shrinks and then obviously becomes defensive or makes excuses.
She went out with a friend for the day recently and came home so bubbly and excited, not like we have seen her in such a long time saying she had had such a good day and not forgotten anything, remembered everyone’s names etc and then when I saw the friend she said she was going to call me as she was so worried about my MILs appearance (weight loss) and her behaviour which she described as erratic.
I am glad the friend noted your MIL's erratic behaviour. It's reassuring to know that what you are seeing is real. I know that there were times when I wondered if it was me that was getting silly, especially when my husband was at his most paranoid.

Unfortunately we all have to learn about dementia the hard way.
 

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