Where to look and what to ask?

[mooma29]

my sister is having memory issues. she has had 3 brain scans, one in 22,23,24. They report there is no change to her brain or vascular health. she is 70. She is having what i would consider to be hallucinations. talking about people she knows/knew but saying things about them that never happened - not outrageous things. stuff like they built a new house or got a new job. if you didn't know you wouldn't find the stories strange. she is very repetitive. She is quite verbally aggressive to her husband who is not in the best of health himself. she knows who we all are, but has forgotten that some people e.g our mum is dead and asks for them sometimes. She has decided that she doesn't like her house and that we are forcing her to live in it.
My other sister took her to the GP today to try and find out what is going on. The GP just says she has to be diagnosed by the memory clinic, who she has been under since 2022. Who so far haven't done anything very much that we can see. more or less when my sisters got home from GP the memory clinic called to say they would visit in the first week of June. I would really like some advice on what to ask them, but also I wonder if there is some form(s) of dementia where there isnt a change in the brain or vascular system? because we need to know what is wrong with her before we can get her the right kind of support. Our dad had vascular dementia so we know something about that, but she isn't really like he was ( i know everyone is different). we want to help her but just dont know who what to do for the best. Her GP was nice enough, but didnt offer anything other than to tell us to ring the memory clinic.
thanks for any thoughts you might have.
Mooma.

 

[Grannie G]

Welcome @mooma29

Don`t worry about what to ask the memory clinic people when they visit. They will know how to assess and make a diagnosis.

If you want to make a note of worrying behaviours so you don`t forget, that will help.

 

[mooma29]

sadly the appointment was cancelled, and there isn't another on the horizon available at the moment. So we are doing what we can to try and secure one.
its very difficult to know what to do for the best

 

[Grannie G]

That is so disappointing @mooma29 all you can do is to continue asking for your sister to be seen Keep reminding them you are very worried.

 

[mooma29]

im nothing if not persistent. thankyou for responding to me i do really appreciate it.

 

[Grannie G]

Good luck. Don’t forget to post an update.

 

[Kevinl]

Sometime we read and never know what to write back, but once and if you get a specific diagnosis what will change?
Assuming it's nothing physical that can be treated with medication to make her better then you end in the wasteland so many of us on here have and still do.
Label it how you like, Alzheimer's, lewy bodies, vascular or whatever we all end up in the same place at the end of the day, dealing with it, somehow and often alone.
I'm not 70 until next year, but my now late wife got mixed, atypical, early onset Alzheimer's, over the years and it's been a long time I got more help from this site than any amount of healthcare professionals.
All due respect to the people who help us deal with all forms of dementia in real life and on here, but it's not something I could do full time for a living, although I was an NHS male nurse in the past, at least we sent most of our patients home all better.
Dementia is a one way trip and it can be a long, long journey. K

 

[mummandamanda]

Hi mooma29,
My mum had a brain scan that we were told showed no concerns and went on to have a diagnosis of early onset Alzheimer’s. Mums symptoms were highlighted by family members to the memory clinic, not by mum, as to her there was just a bit of forgetfulness and no other concern.

 

[mooma29]

Sometime we read and never know what to write back, but once and if you get a specific diagnosis what will change?
Assuming it's nothing physical that can be treated with medication to make her better then you end in the wasteland so many of us on here have and still do.
Label it how you like, Alzheimer's, lewy bodies, vascular or whatever we all end up in the same place at the end of the day, dealing with it, somehow and often alone.
I'm not 70 until next year, but my now late wife got mixed, atypical, early onset Alzheimer's, over the years and it's been a long time I got more help from this site than any amount of healthcare professionals.
All due respect to the people who help us deal with all forms of dementia in real life and on here, but it's not something I could do full time for a living, although I was an NHS male nurse in the past, at least we sent most of our patients home all better.
Dementia is a one way trip and it can be a long, long journey. K

I would tend to agree with you, if we were sure that is what ails her, but that is the thing we aren't. We know all her behaviour symptoms point that way, but the medics say there is nothing showing on the scans. So if it is, it is and we will do what we can to see her though it. but if it isn't, then we might need to do something different to help her, and that's our dilemma and why we feel we need an actual diagnosis.

 

[mooma29]

last evening someone from the memory clinic rang me. They basically said because her scans show no change in her brain there isn't any point in "them" seeing her, but that they might refer her on to neuro. who can do more in depth tests to see if it is something else, but would still be able to diagnose dementia if that is what it is as well. they have a group meeting on Wednesdays and the caller said she would try and get her referred at the one tomorrow. I asked what we do if she gets any worse in the meantime, and i was told you'll just have to keep ringing us back. I don't know how people who don't have anyone to advocate for them go on. It is a sorry state of affairs.

 

[mooma29]

Hi mooma29,
My mum had a brain scan that we were told showed no concerns and went on to have a diagnosis of early onset Alzheimer’s. Mums symptoms were highlighted by family members to the memory clinic, not by mum, as to her there was just a bit of forgetfulness and no other concern.

Hello
can i ask how ( method) they came to the conclusion, and how old your mum was? my Sister will be 70 in August, which doesn't feel that old these days, but I would think she is too old for an early onset diagnosis?
thanks

 

[mooma29]

looking after my sister has become a shared responsibility for her husband, daughter, me and another sister. my brother in law is doing his best, but he is quite unwell himself and her never ending looping conversations are taking their toll on him. they are alone in the house together most days. . my lovely niece is so distraught at the changes in her mum that she isnt really up to decision making. so a lot of that is falling to me and my other sister. We have tried so hard with the memory clinic, but its just fob off after fob off. They have no staff- i know that and I'm not unsympathetic. But we have booked a private consultation which is in July. still a month to wait but at least it is an appointment.
I was with my sister yesterday evening and the rate of change in her is startling. She was telling me stories that I know are not true. (confabulation?) e.g. she had seen our dad up a ladder doing some pointing and she told him he was too old and to get down. Our dad died 16 years ago, and certainly wouldn't have been up a ladder for 10 years prior to that. she insisted it was just last month. And as soon as she got to the end of the stories she started back at the beginning again.
She believes she has 3 houses, and that two of them are decorated in exactly the same way. She doesnt want to live in this house, she wants to go to the other house. She believe that when she was ill and in hospital we bought the house behind her back and have made her move in and demands teh keys for the other house. She knew who I was, but kept asking me where she was. To my untrained eye this is all stuff that suggests and is typical of some form of dementia, but the memory clinic say they aren't convinced because there are no changes on her brain scans - hence the fob offs. but realistically i cant imagine what else it can be.
not sure why im writing this down, just venting really

 

[Jaded'n'faded]

We can't diagnose because we're not doctors and we don't know your sister. However... I can't be the only one here thinking that the behaviours you describe just scream 'dementia'.

I'm glad you're going for a private consultation as the MC are really letting you down. It's really not good enough to say 'nothing appears on the scans so she's fine,' and I don't know why they are doing this. Dementia is usually diagnosed after a series of cognitive tests and an interview with someone who really understands the disease (or at least, one would hope so) not just through scans.

With my mum, I'd already had to move her to a care home following a fall and hospital stay but I'd been seeing increasingly worrying symptoms for years. I then had to get her officially diagnosed. She'd had a CT scan following her fall as she hit her head and a consultant from the MC came to see her in the care home then talked to me on the phone. He told me the scan didn't say much but mum clearly had dementia.

I very much hope your private consultation gives you a clearer picture of what's going on with your sister.

 

[Newplodder]

looking after my sister has become a shared responsibility for her husband, daughter, me and another sister. my brother in law is doing his best, but he is quite unwell himself and her never ending looping conversations are taking their toll on him. they are alone in the house together most days. . my lovely niece is so distraught at the changes in her mum that she isnt really up to decision making. so a lot of that is falling to me and my other sister. We have tried so hard with the memory clinic, but its just fob off after fob off. They have no staff- i know that and I'm not unsympathetic. But we have booked a private consultation which is in July. still a month to wait but at least it is an appointment.
I was with my sister yesterday evening and the rate of change in her is startling. She was telling me stories that I know are not true. (confabulation?) e.g. she had seen our dad up a ladder doing some pointing and she told him he was too old and to get down. Our dad died 16 years ago, and certainly wouldn't have been up a ladder for 10 years prior to that. she insisted it was just last month. And as soon as she got to the end of the stories she started back at the beginning again.
She believes she has 3 houses, and that two of them are decorated in exactly the same way. She doesnt want to live in this house, she wants to go to the other house. She believe that when she was ill and in hospital we bought the house behind her back and have made her move in and demands teh keys for the other house. She knew who I was, but kept asking me where she was. To my untrained eye this is all stuff that suggests and is typical of some form of dementia, but the memory clinic say they aren't convinced because there are no changes on her brain scans - hence the fob offs. but realistically i cant imagine what else it can be.
not sure why im writing this down, just venting really

I'm so sorry you are going through this. Because of the long waiting lists here (North Wales) we paid for my husband to have an MRI of his brain. I was convinced that would show something, but it didn't really...other than to rule out that there had not been a stroke or tumour etc. It didn't indicate dementia, but of course, his memory and thinking/cognitive skills had been failing for some time before this. The memory clinic put him through a series of cognitive tests and the consultant told us he has vascular dementia...that conclusion was based on those paper and verbal tests...the one scan he had was inconclusive. There is no medical treatment for him, but at least his condition is validated and having a diagnosis has made some things easier, both practically and emotionally. I think you need to go back to the memory clinic and insist your sister is at least offered some form of testing. Good luck!