Mum mid stage with no diagnosis

[Anna T]

Hello everyone!

I’d like to share my experiences in the hope it could help others and I desperately need support as I try and come to terms with the fact that my darling mum does have dementia.
Although she has not been diagnosed it is beyond a shadow of a doubt dementia - mid stages.
My mum has been badly let down by the memory clinic she attended - we currently have zero support ..
The grief I feel is beyond anything I’ve ever experienced it hurts so much - I’m hoping that by writing this down it will help me begin to accept the situation.
I was with mum today she still lives alone in her house and by the end of the visit she didn’t know me - I’m not sure how I will ever come to terms with this?
Mums symptoms fluctuate from her being semi like herself but with “elements” of her symptoms which I find alarming and disturbing I’m still trying to understand WHY this is happening to her?
I just don’t know how I’m going to carry on seeing her further deteriorate, watching her suffer.
I’m so so angry.

 

[kindred]

Hello everyone!

I’d like to share my experiences in the hope it could help others and I desperately need support as I try and come to terms with the fact that my darling mum does have dementia.
Although she has not been diagnosed it is beyond a shadow of a doubt dementia - mid stages.
My mum has been badly let down by the memory clinic she attended - we currently have zero support ..
The grief I feel is beyond anything I’ve ever experienced it hurts so much - I’m hoping that by writing this down it will help me begin to accept the situation.
I was with mum today she still lives alone in her house and by the end of the visit she didn’t know me - I’m not sure how I will ever come to terms with this?
Mums symptoms fluctuate from her being semi like herself but with “elements” of her symptoms which I find alarming and disturbing I’m still trying to understand WHY this is happening to her?
I just don’t know how I’m going to carry on seeing her further deteriorate, watching her suffer.
I’m so so angry.

Oh my dear I am so sorry. I am so sorry about your grief, and I know this grief is shared by so many of us on this forum. thank you for sharing your experience. We don't know why this is happening to our loved ones. Research is struggling, but our minds desperately want reasons. I'm not sure we ever come to terms with this but we can get to a point where it maybe hurts us less, largely because we are used to it … That sounds like a platitude and probably is. I have been sustained so much by this forum, been supported with love and sensitivity and I know you will be.
Could you visit your GP and try again for some kind of diagnosis and support. Write down what you have seen, what the symptoms are? Forgive me if you have already tried this.
But I mainly want to say that this forum will be with you every step of the way.
with warmest wishes, Kindred.

 

[Anna T]

Oh my dear I am so sorry. I am so sorry about your grief, and I know this grief is shared by so many of us on this forum. thank you for sharing your experience. We don't know why this is happening to our loved ones. Research is struggling, but our minds desperately want reasons. I'm not sure we ever come to terms with this but we can get to a point where it maybe hurts us less, largely because we are used to it … That sounds like a platitude and probably is. I have been sustained so much by this forum, been supported with love and sensitivity and I know you will be.
Could you visit your GP and try again for some kind of diagnosis and support. Write down what you have seen, what the symptoms are? Forgive me if you have already tried this.
But I mainly want to say that this forum will be with you every step of the way.
with warmest wishes, Kindred.

 

[Anna T]

Thank you so much for taking the time to respond.
I feel so isolated and unless you are going through it it’s just impossible to articulate to others ... I really do hope that I find the support that you have here as I’m losing my mind!

 

[canary]

Hello @Anna T and welcome to Talking point.

Im sorry that realising that your mum has dementia has coincided with her not knowing who you were. It is quite a devastating symptom. I agree with @kindred - see if you can get a referral back to the memory clinic for a diagnosis, which will open doors for some help.

Im afraid, though, that there isnt a lot of support out there for people with dementia and their carers. When mum had got her diagnosis (she was also in mid-stage) and had been started on donepezil I was given a load of leaflets and that was it - she was discharged back to her GP. I have got most of my information and help here on DTP. The good thing about this forum is that we all understand what you are going through, so you can tell us like it is.

 

[Sirena]

Canary is right, there is little support even when you have a diagnosis - that's why these forums are so helpful. Please keep posting, we all understand how you feel.

You may well find your mother not recognising you also fluctuates like some of her other behaviour. My mother is now in a care home and sometimes she greets me enthusiastically, other times she has no idea who I am.

It would be worth trying for another memory clinic appointment. You won't get much support but you should get a diagnosis. The first time my mother went she was told there was nothing wrong with her. Nine months later she had deteriorated considerably and at that point she returned to the clinic and was diagnosed.

 

[Jintyf]

Hello Anna
Thanks for joining us and I hope you can get lots of help and support here. There are many very experienced people (mainly ladies!) who have been really helpful to me in my journey with my own dear Mums dementia.
My first port of call was Mums GP to get an assessment after that I was able to access Social Work and I also got her attendance allowance (we are self-funding but that is not means-tested).
It's a hard journey and no two cases are the same but please keep reaching out to others theres good help here.
You mention that your Mum had been attending a memory clinic and had been let down? Was she in the process of being diagnosed?

 

[Anna T]

Hello Anna
Thanks for joining us and I hope you can get lots of help and support here. There are many very experienced people (mainly ladies!) who have been really helpful to me in my journey with my own dear Mums dementia.
My first port of call was Mums GP to get an assessment after that I was able to access Social Work and I also got her attendance allowance (we are self-funding but that is not means-tested).
It's a hard journey and no two cases are the same but please keep reaching out to others theres good help here.
You mention that your Mum had been attending a memory clinic and had been let down? Was she in the process of being

Hello Anna
Thanks for joining us and I hope you can get lots of help and support here. There are many very experienced people (mainly ladies!) who have been really helpful to me in my journey with my own dear Mums dementia.
My first port of call was Mums GP to get an assessment after that I was able to access Social Work and I also got her attendance allowance (we are self-funding but that is not means-tested).
It's a hard journey and no two cases are the same but please keep reaching out to others theres good help here.
You mention that your Mum had been attending a memory clinic and had been let down? Was she in the process of being diagnosed?

Hello Anna
Thanks for joining us and I hope you can get lots of help and support here. There are many very experienced people (mainly ladies!) who have been really helpful to me in my journey with my own dear Mums dementia.
My first port of call was Mums GP to get an assessment after that I was able to access Social Work and I also got her attendance allowance (we are self-funding but that is not means-tested).
It's a hard journey and no two cases are the same but please keep reaching out to others theres good help here.
You mention that your Mum had been attending a memory clinic and had been let down? Was she in the process of being diagnosed?

Hello @Anna T and welcome to Talking point.

Im sorry that realising that your mum has dementia has coincided with her not knowing who you were. It is quite a devastating symptom. I agree with @kindred - see if you can get a referral back to the memory clinic for a diagnosis, which will open doors for some help.

Im afraid, though, that there isnt a lot of support out there for people with dementia and their carers. When mum had got her diagnosis (she was also in mid-stage) and had been started on donepezil I was given a load of leaflets and that was it - she was discharged back to her GP. I have got most of my information and help here on DTP. The good thing about this forum is that we all understand what you are going through, so you can tell us like it is.

 

[Anna T]

Thanks for the welcome Canary
My mum has been really ill for a couple of years and I’ve been hoping so badly that it wasn’t dementia as the memory clinic told us it wasn’t dementia - it’s such a long story!!
Unfortunately I know about the lack of suppprt that’s why I joined today in the hope of a new direction.
Mum has many different symptoms that just leave me distraught among them is not recognising me has her daughter at times ...so I’ve known for a couple of years that she may have dementia I just find it really hard to accept especially without a diagnosis ..

 

[Anna T]

Canary is right, there is little support even when you have a diagnosis - that's why these forums are so helpful. Please keep posting, we all understand how you feel.

You may well find your mother not recognising you also fluctuates like some of her other behaviour. My mother is now in a care home and sometimes she greets me enthusiastically, other times she has no idea who I am.

It would be worth trying for another memory clinic appointment. You won't get much support but you should get a diagnosis. The first time my mother went she was told there was nothing wrong with her. Nine months later she had deteriorated considerably and at that point she returned to the clinic and was diagnosed.

 

[Anna T]

The memory clinic in question told us she doesn’t have dementia which is outrageous so we won’t be going back- this situation is ongoing for 2 years and it seems to be so complicated and all along my darling mum is suffering with no culpability from any services involved.
How is your mum - is she settled in the care home?

 

[Anna T]

Hello Anna
Thanks for joining us and I hope you can get lots of help and support here. There are many very experienced people (mainly ladies!) who have been really helpful to me in my journey with my own dear Mums dementia.
My first port of call was Mums GP to get an assessment after that I was able to access Social Work and I also got her attendance allowance (we are self-funding but that is not means-tested).
It's a hard journey and no two cases are the same but please keep reaching out to others theres good help here.
You mention that your Mum had been attending a memory clinic and had been let down? Was she in the process of being diagnosed?

 

[Anna T]

Hi thanks for your welcome !
Mum already had AA and the general routes if suppert GP / Social services have just paid in lip service!
The memory clinic told us she doesn’t have dementia which makes me question and deeply distrust the whole infrastructure!!!
We are also self funding even the carers we accessed were inept and lacking empathy.
It just seems unless you have lived experience of the heartbreak of your loved experiencing this horrific disease you just tick boxes and give platitudes... Please excuse my venting

 

[Woo2]

Hi @Anna T . I echo everybody else . Fantastic support here from everyone , lots of advice and support . They have helped me through a difficult patch . I agree that there is very little support . Have you been in touch with Admiral Nurse ? I found them really helpful , had some advice but they made me feel I was doing the best /right things for my PWD. I’m sorry you feel so alone , always people here to vent off to. We all in a similar situation. I hope posting helps you and if you get the chance to read some posts you will be amazed how much more you will learn here than anywhere else. Take care .

 

[charlie10]

Hi @Anna T.....your post echoes our experience of my FiL.....we have suspected he has at least the start of dementia for the last couple of years. He spent some time in hospital earlier this year, where he displayed some worrying behaviour, and was then discharged back to his own home. The Memory psych came out to assess him and said he had Delirium, which can present very much like dementia.....it often goes eventually but in the elderly it can be unpredictable and they never go back to normal (he's 90). Over the past couple of months he's a bit better, can hold a simple conversation, heat his microwave meals, and most of the time recognises his sons (tho sometime confuses their names). We still think he has underlying dementia.....but the thing is, if it's dementia or delirium it's just a name and neither will get better. So we've tried to step back from diagnosis.....it only seems to be useful for medication and council rate refund.....and just deal with how he is.


Is it possible your mum has something similar? Regardless of whether she has dementia or not I would think she is still eligible for carers etc from the council if she is not self-funding. You might have to stamp your feet a bit tho This is a very cruel disease, and from what I read on the forum, the carers suffer the most in a way, because they are grieving for life and experiences lost, whereas many pwds are, maybe thankfully, unaware. Keep posting, there are lovely people on this forum who always have a listening ear

 

[Sirena]

The memory clinic in question told us she doesn’t have dementia which is outrageous so we won’t be going back- this situation is ongoing for 2 years and it seems to be so complicated and all along my darling mum is suffering with no culpability from any services involved.
How is your mum - is she settled in the care home?

Yes, she seems to be as content as someone with dementia can be.

Can you tell us something about the issues you encounter with your mother? Does she have any help at home, are you concerned about her safety?

 

[Anna T]

Yes, she seems to be as content as someone with dementia can be.

Can you tell us something about the issues you encounter with your mother? Does she have any help at home, are you concerned about her safety?

 

[Anna T]

That must be of some reassurance for you to see your mum as content as she can be ...

As I am slowly navigating this journey I find myself gripped with enormously waves grief at the unpredictability and quick decline of my mum..
I’m not sure if an “official” diagnosis will help it certainly won’t be a “relief” more so a confirmation of the hideous decline ahead - although it may help her drug wise.
In short four years ago she was “normal” and working , we lost my dad and everything changed mum declined rapidly,heartbroken after a 51 years of marriage.
She has always been extremely resilient and still is even with her visual impairment.
She became insulin dependent after dad died and then began to get delirium when she was in and out of hospital due to her blood sugars being dangerously high...
Fast forward to now a little over two years she is unable to cook more visual than dementia but is so fiercely independent that she constantly “masks” things and tell you one thing when you know it’s not the case.
We have accessed carers for shopping/cooking etc but they were inept
She has so many symptoms of varying degrees that come and go from experiencing frightening hallucinations to not recognising her home and “wanting to go home” and sometimes not recognising me has her daughter she thinks their is two of me her daughter and the “other one” from hiding her clothes in plastic bags, obsessing over money and or losing her purse/keys - she actually sits at home holding her keys she also makes “lunches” for the “people” in her house as I find packages of sandwiches wrapped in foil with cups of tea fitted around the house - which she denies making when she is asked.
There is so much more but actually writing this
Is really distressing and surreal I just don’t know how this can be ..
The juxtaposition is when she is “ok” she has no recollection of this and is her usual sweet self about feels very depressed and “useless “as she gets frustrated by her failing cognitive abilities..
Sorry for the essay... trying to get her the help she deserves it not easy and for the most part she doesn’t want it and can’t accept things are so so bad and if you tell her the things that she does she gets very frightened then angry saying how ridiculous to say such things and I like to make it worse than it is !!! She will never understand...

 

[canary]

The memory clinic told us she doesn’t have dementia which makes me question and deeply distrust the whole infrastructure!!!

I am guessing that the memory clinic made a diagnosis of Mild Cognitive Impairment (MCI). This is often a precursor to dementia and is made when there are symptoms, but nothing shows on the tests/scans. There is no knowing how long this stage will last, but about 50% of people with this diagnosis will go on to get a diagnosis of dementia within 1 year.

Usually they will explain this in the memory clinic and say to come back if the symptoms get worse.
Did you go with your mum to this appointment?

 

[canary]

((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))) @Anna T

I hear your distress. You are overwhelmed.
All the things that you describe are usual in dementia - the fluctuating abilities, the insisting that there is nothing wrong with them, the thinking that there are other people in their home, the not recognising their own home or relatives, the obsessing over money, the hiding things. It all sounds very, very much like mid-stage dementia.