If I could go back to original diagnosis day….

[JanBWiltshire]

I was thinking today, if I could go back to diagnosis day of my mother’s dementia at the doctor‘s I would certainly be much more proactive and ask questions because I have found nothing was said which is of any help or support.

1. I should have asked what type of dementia it was - I was only told it was vascular and mixed two years after diagnosis and only by accident when my mother was in hospital.

2. I should have asked for some info on how the dementia might develop, things to look out for.

3. There should have been some kind of support or advice for dealing with the downright denial of both my parents, which still continues even though my mother is now very confused.

4. I should have asked what the challenges ahead might be.

What do others think about the help and support (or lack of it) after diagnosis? For this has been and continues to be like walking up a blind alley! I’ve gone from being a very positive person to feeling as though I am in a knife edge the entire time, waiting for the next thing to happen or the next battle with my elderly parents as they deny they need help, deny they forget things and the general confusion is so disturbing.

I am keen to find out what others think because I suspect there is a massive lack of help in the initial stages and that clearly leaves us all in a vulnerable situation when we are trying to care for our loved ones while they face dementia.

 

[Grannie G]

The diagnosis is often so overwhelming, however much it is expected and I doubt many of us have had the presence of mind to ask what we wish we had asked with hindsight.

Because Dementia is such an enormous umbrella term, even with the different dementias and because so many other factors can affect the progression, I doubt many doctors would be willing or able to give precise answers to your questions @JanBWiltshire

It's what makes it all so difficult.

 

[MartinWL]

Unfortunately you're asking for something that cannot be provided. I was pointed towards the Alz Soc for advice, but there is no predicting the future and the problem over denial is unsolvable.

 

[CarolinePathway]

I feel the same, its a learning curve though and hard to predict what the future holds for each individual. I certainly wish I had informed myself at the start as I think it might have made the journey slightly less hard.

 

[Duggies-girl]

@JanBWiltshire I had no questions which is surprising because thought I knew what was coming. 'Your dad has dementia, alzheimers' and off you go. I suspect that this is the usual thing but oh how I wish that I knew what was really coming and how to cope with it all. Yes it is a real learning curve and I was very unprepared.

 

[canary]

I do wish that at diagnosis we are all equipped with a fully functioning crystal ball and magic wand

 

[Lawson58]

My husband was diagnosed over seven years ago and has never fitted the usual picture of a dementia sufferer. I had no idea of what questions to ask of the consultant at the time of diagnosis but they would have all been totally irrelevant as things turned out. Even now, the consultant has no idea of how to define his condition so I try to take as it comes.

 

[jennifer1967]

we found out by phone which was a memory clinic nurse passing on the consultants findings. referred to alz. soc. and that was it. if you knew what was involved, would you have run for the hills. i think they rely on charities and voluntary organisations to take up the slack and inform rather than them. there was no tablets so no monitoring or follow up needed.

 

[lollyc]

So true @jennifer1967 - if I knew then what I know now, you wouldn't have seen me for dust!

I agree that everyone's experiences of dementia are different, but there are also many similarities, whatever label you get: Lack of logic, inability to perform tasks that were previously done unconsciously, incontinence, wandering... It would be helpful to know that these are the norm, rather than thinking you are dealing with something unique.

I would have liked a contact - nurse or similar - to point me in the right direction, and to check whether we needed anything. Many of us know nothing about POA, AA, Carers Allowance, Incontinence referral, respite, clubs, etc., but we don't know we don't know! Leaflets and helplines are all very well, but sometimes you just want to talk to a person who has some knowledge of you and your PWD.

This forum has been my biggest help, but I came to it, rather late in the day, because a volunteer at one of Mum's club suggested it. Not everything applies to our situation, but there are many snippets of information that I've filed away in the "just in case" mental box, ready should the need arise.
I am one of those people who needs to be prepared - I don't easily do going-with-the-flow. Not an ideal character trait for coping with dementia!

 

[nae sporran]

Our position is slightly different. The diagnosis was made about a year after C's stroke and it felt like she was still recovering from the stroke. Maybe I was in denial and didn't mind working a bit harder to cover for her. Point two about being forewarned when a seizure sent her into a deeper level of confusion.

 

[jennifer1967]

Our position is slightly different. The diagnosis was made about a year after C's stroke and it felt like she was still recovering from the stroke. Maybe I was in denial and didn't mind working a bit harder to cover for her. Point two about being forewarned when a seizure sent her into a deeper level of confusion.

thats weird as he didnt need tests and showed no symptoms until a tia which affected his memory a few months before. i asked directly was it vascular dementia to the gp.

 

[Feeling unsupported]

Mum was repeatedly told, 'just mild cognitive impairment', so I struggled on, trying to support her as life became increasingly challenging. At the forth time of asking, suddenly, she was upgraded to 'medium to severe Alzheimer's'. Finally, I thought support and advice was coming, but no....we refused medication, as it clearly did not agree with her and at that stage, we felt it was already too far gone to want to try and slow the process. So yes, she was discharged by the mental health team. It really is outrageous, that there is no further support at all. Is there any other chronic/terminal disease, where there are no reviews or ongoing support?

 

[Jaded'n'faded]

It all happened backwards for me really. I diagnosed my mother after finding this site. Mum had not seen a doctor for years and family was in denial so for a couple of years it was just me and this forum.

When she fell and ended up in hospital, I told the medics she had dementia. No, said the consultant. Yes, said I. On discovering he'd believed all the made-up stuff mum told him, he vanished without trace.

On moving mum to a care home, I told the SW mum had dementia. No, she said, she'd be fine in a little flat. No, said I - she has dementia. Six months later a consultant phoned me and said, 'Your mother has vascular dementia.' I filled him in on the last few years and he said, 'Your mother has mixed dementia - vascular and Alzheimer's.'

Funny, but that's what I'd diagnosed a few years earlier. Help, advice, support? There was none. Again, this forum has helped me more than I can say. It's probably why I'm still here, 2 years after mum's death.

 

[JanBWiltshire]

I do wish that at diagnosis we are all equipped with a fully functioning crystal ball and magic wand

Hadn’t thought of that - brilliant idea!!!

 

[JanBWiltshire]

It all happened backwards for me really. I diagnosed my mother after finding this site. Mum had not seen a doctor for years and family was in denial so for a couple of years it was just me and this forum.

When she fell and ended up in hospital, I told the medics she had dementia. No, said the consultant. Yes, said I. On discovering he'd believed all the made-up stuff mum told him, he vanished without trace.

On moving mum to a care home, I told the SW mum had dementia. No, she said, she'd be fine in a little flat. No, said I - she has dementia. Six months later a consultant phoned me and said, 'Your mother has vascular dementia.' I filled him in on the last few years and he said, 'Your mother has mixed dementia - vascular and Alzheimer's.'

Funny, but that's what I'd diagnosed a few years earlier. Help, advice, support? There was none. Again, this forum has helped me more than I can say. It's probably why I'm still here, 2 years after mum's death.

Support from others is so important isn’t it? I thank you for remainimg I’m the forum as your experience is such a help, as well as a comfort to us all living through this utter nightmare.

 

[JanBWiltshire]

Mum was repeatedly told, 'just mild cognitive impairment', so I struggled on, trying to support her as life became increasingly challenging. At the forth time of asking, suddenly, she was upgraded to 'medium to severe Alzheimer's'. Finally, I thought support and advice was coming, but no....we refused medication, as it clearly did not agree with her and at that stage, we felt it was already too far gone to want to try and slow the process. So yes, she was discharged by the mental health team. It really is outrageous, that there is no further support at all. Is there any other chronic/terminal disease, where there are no reviews or ongoing support?

You are so right. It seems there is plenty of help while In hospital but then you are in your own and my particular problem is two very elderly parents in utter denial that anything is wrong. I’ve walked away before and feel close to that again now. Just awful.

 

[Duggies-girl]

You are so right. It seems there is plenty of help while In hospital but then you are in your own and my particular problem is two very elderly parents in utter denial that anything is wrong. I’ve walked away before and feel close to that again now. Just awful.

When my dad was in hospital I had to visit twice a day every day just to make sure that dad was okay. I am still surprised that he got out alive., it was the worst three weeks of my life and dads. He forgot about it as soon as he was out but I still remember it with horror and that was almost three years ago now.

 

[JanBWiltshire]

When my dad was in hospital I had to visit twice a day every day just to make sure that dad was okay. I am still surprised that he got out alive., it was the worst three weeks of my life and dads. He forgot about it as soon as he was out but I still remember it with horror and that was almost three years ago now.

That is terrible. I think we have been lucky in that the care in hospital has been good although the worst thing has been my mother being unable to have visitors for two weeks as she tested positive for Covid. We have to rely on video calls but she is so confused and upset I’m not convinced it is a help. We are half way through so hope things will be easier once I can visit again.

 

[JanBWiltshire]

So true @jennifer1967 - if I knew then what I know now, you wouldn't have seen me for dust!

I agree that everyone's experiences of dementia are different, but there are also many similarities, whatever label you get: Lack of logic, inability to perform tasks that were previously done unconsciously, incontinence, wandering... It would be helpful to know that these are the norm, rather than thinking you are dealing with something unique.

I would have liked a contact - nurse or similar - to point me in the right direction, and to check whether we needed anything. Many of us know nothing about POA, AA, Carers Allowance, Incontinence referral, respite, clubs, etc., but we don't know we don't know! Leaflets and helplines are all very well, but sometimes you just want to talk to a person who has some knowledge of you and your PWD.

This forum has been my biggest help, but I came to it, rather late in the day, because a volunteer at one of Mum's club suggested it. Not everything applies to our situation, but there are many snippets of information that I've filed away in the "just in case" mental box, ready should the need arise.
I am one of those people who needs to be prepared - I don't easily do going-with-the-flow. Not an ideal character trait for coping with dementia!

You are so right about not knowing the things we should know. A little bit of knowledge really does help and would stop this feeling like walking towards disaster. Also, when the next stage comes, it would be good to be a little more prepared even if that is a mental note to self “oh, that is quite usual in dementia“. Like you, I prefer to know things in advance so this dementia journey is very uncomfortable!