Is diagnosis of dementia a good thing

Their 70s, keyboard is unable to spell today.

One thing to remember is that Vascular Dementia Is quite different from Altzeimers, one friends husband had his first ‘episode’ some years ago and was a bit forgetful and he hasn’t worsened at all.
My MIL had her first episode, then had another one 6 weeks afterwards and went downhill alarmingly quickly.
So, a diagnosis is helpful to sort out which it is, the agencies were quite helpful but once they realised that there were family members nearby ( even though they were in there 70s) we were more or less left to it.
Fortunately SIL knows her way around the system and knew someone who knew somebody who knew where to go to get the help we needed.
They sure don’t make it easy though!

There is no need to be alone.

Izabella knows her way round the system but, for anyone who doesn't, Dementia Support Workers at the Alzheimers Society do.

There is a mountain of help available through the Alzheimer's Society for all types of dementia.

Some memory clinics and GPs are better than others at signposting to AS - goodness knows why as it helps relieve the pressure on them.

Sorry to be evangelical about AS.

silver.ining you have totally broken your own argument you say after your mum was diagnosed everything stopped then you continue to say you got attendance allowance she went to a day centre and you got practical help from SS none of that would have happened without a diagnosis
Yes the agencies helping might change but it does open doors to all the help you need from either NHS or charities
I had lots of help with Mum and with Dad too before mum went into a care home They were both offered a day centre first one then two days a week they both loved that, then mum was offered a day in a dementia Day centre to give dad a rest day
Through a charity dad had a telephone buddy, mum had a lady help with her personal washing Through SS they had lots of Occupation items put in the house the weeks before she went into a care home we were given two nights a week through a charity of someone staying the night so dad could get some sleep This was eight years ago so it may have changed for the worse We did have to apply for these things it wasn’t just given to us so there was lots of homework to do

Sadly I know of many who found little support or information following diagnosis. For myself I know my way around 'the system' which is just as well. How families with no medical knowledge manage I know not. We had several incidents of bad or non communication within departments, missing prescriptions, appointments I had apparently cancelled (i didnt) GP unaware of diagnosis .... I could go on........

And all of that is with a GP and other medics in the house! Goodness only knows how everyone else copes.

I am another who had no support following diagnosis other than a leaflet to read! At that time, mum did not need any support, she was aware of her diagnosis and able to live alone without any support for several years.

When mum needed more care than me and my siblings could provide, we sorted an agency ourselves and mum paid for it. No involvement from Social Services or her doctor.

Social Services finally got involved when mum had a fall and ended up in hospital right at the start of lockdown and it became apparent to us and the doctors that mum could not go home on her own. I think they would have got involved even if she had not had a diagnosis as they needed to get her out of hospital quickly.

The diagnosis was helpful to claim attendance allowance but it did not help get a Blue Badge as mum was turned down even after new rules were introduced for hidden disabilities.

It is important to know, your mother's behaviour could change and you will understand why.

Just to say that there is no medication to slow vascular dementia though some medications can help with the effects.

The progress of vascular dementia is a stepped decline where the person plateaus and then has a notable drop in brain function. Alzheimer's is a much more gradual decline.

Thanks for the information Izabella .

betty my CH (current husband) has just reminded me of a course he is doing which he is finding extremely helpful.
It is free and online.

www.utas.edu.au/wicking/understanding-dementia

You may also find this link helpful depending on where you are located geographically

www.dementiauk.org/get-support/admiral-nursing/

Sorry to hear about your mum Betty. As has already been said there are advantages to your mum receiving this diagnosis.

It isn't curable but medication can slow down the process initially, also you can see what assistance both practical and financial may be available.

My wonderful step father had vascular dementia. It's a protracted and difficult journey and we were thankful for the assistance that we received to care for him in the best way possible.

.

Betty, my experience was the day my mum was diagnosed was when she was discharged. No help advice medication or sympathy was offered and we were on our own.
I got in touch with Alzheimer’s society who were very helpful but I felt very alone and wondered what the point of diagnosis had been.
I claimed Attendance allowance etc on her behalf and got her into a day centre and later contacted social services for practical help.
Mum died 7 years ago. I wish you well, it’s a long and not always easy journey but I always did my best, which brings me comfort when I think of my dear mum.

We thought for years that my cousin was just being an awkward beggar, kept losing phone numbers etc; and then we realised it had been the early signs of dementia. We all lived miles away from him and didn't see him very often and also didn't help us not knowing something was wrong - had we seen him more often it might have dawned on us that there was a problem. We were far more understanding of the situation when the diagnosis was made and everything made sense and he couldn't help his behaviour.

Dear Betty. All the above advice is excellent.
When my Dad was diagnosed it was almost a relief as we had suspected for quite a while but did stick our heads in the sand. The relief came from acknowledging the problem and then doing all we could to support him.
I know my local council were an extremely helpful resource as years went by. They should do an assessment for your mum and a carers assessment for you. In the early days this may not seem necessary but it is also a gateway to other services you may need on the way such as occupational therapy, respite care etc. My dad had some lovely social workers. As I said initially we didnt feel we needed a lot but they can point you towards help and advice and if you do need more help as time goes on it's good to have a point of contact who knows you and your mum.
My local council also had a carers group which not only was very supportive but entitled us to three free days use of a local beach hut a year. A little thing but the source of some very happy memories.
Most importantly organise Power of Attorney as soon as possible. I delayed and had to apply for a lesser version which means you have to have the agreement of the courts which not as straightforward.
As time goes on you may need to support your Mum with every day issues from utilities to benefits,all of this is achievable if you have the authority to do so.
Every family and every relationship is different. Dementia affects people differently.
Make full use of all the organisations that can help you and the experience of other carers. Find out as much as you can about how dementia affects the individual and how they view the world it can really help.
As a relative it can be a hard and stressful and upsetting experience be gentle with yourself and look after your own wellbeing. There will also be moments of love and happiness. Make the most of each day and please reach out for help and support. Whatever you are feeling whether it is concern,anger or at times sheer frustration someone will have been there and understands. You are not on your own.

Izabella, my very best wishes to you x

I looked after my mum when she had dementia and the person who helped me most was an EMI (elderly mentally ill) nurse organised by our GP. If I was struggling I would phone him and he would tell me what to do.
A very good friend of mine also had dementia. Her mother had had it too and she used to argue with her mum when her mum said something wrong. You must not argue with someone with dementia. If they say something which is clearly nonsense, just smile and agree, then change the subject.

I agree with BlueBelle hats off to Izabella you are a brave lady and your posts are so supportive for those families who are going through the same thing

A diagnosis may not make you feel any different Betty but as has been said already it does open the doors for financial and practical help. You will need this support as the disease progresses. I'm sorry your Mum has this illness, I hope you both find the strength and support to deal with it

I think diagnosis is the only way you ll get funding or help with the progression of the disease and you will need help
From mys personal point of view I don’t want a diagnosis because I just know I d go completely downhill I would lose any sense of fight or want to continue and the thought of knowing what will happen would be too much for me I nursed my Nan in my home with very little help and then my mum who became too hard to look after and had to go into a care home the most agonising decision
I totally take my hat off to you izabella I m not a depressed person by any means but I would be unable to stay upbeat I think your bloody wonderful to manage so well and I hope the medication holds you for many more years

You must be is shock, betty!

Please access the Alzheimer's society. There are Denentia Support Workers who give amazing support by listening and offering advice.

As well as the course Izabella has mentioned there is a course for carers which is really helpful, offering advice on strategies for helping your mum, coping with the difficulties, advice on legal matters, benefits etc and, very importantly, looking after yourself.

But, above everything - don't worry -there is support out there so please use it.

Betty65, the diagnosis won't make you or mum feel happier, and I'm so sorry you must be in turmoil at the moment. However, the formal diagnosis will make you feel less alone in the future and better able to get help when you need it - and you must learn to ask for help. The thing about dementia, I think, is that you always feel one step (or more) behind this cruel illness, whereas professionals will be able to move you both forward, but you'll have to be able to be forceful for both of you and get them involved early on. You'll need to be able to start the conversation with 'I'm calling about my mum, she has a formal diagnosis of vascular dementia ...' . It's difficult and it needs a bit of practice but the words get results from professionals, even if things still move slowly. Get power of attorney if that is still a possibility or, if not, 'appointment to act' if you need to deal with her pension etc. DWP will be quite willing for you to bear the burden as long as she has a diagnosis! I don't mean to be negative, been there and done all that, and also delayed getting the official diagnosis for a long time, but actually it will also help you to get the support to let your mum to lead her own life for as long as possible. The thing to come to terms with first of all is that this is happening and is going to get worse - a big step - and you are likely to become your mum's carer which is a big change in role to come to terms with. That's if you are willing to take it on, don't feel guilty if you can't deal with what's to come and get help to decide what to do. Whatever you decide you need help too and the local carers' association is invaluable to talk you through the help available, such as contact with dementia groups locally, even just listening to you. Do call them if you don't know what to do next. Do things in your own time, but when you're feeling strong try to move things along. Life can still be happy with your mum but try to be prepared because it will be difficult too. Look after yourself Betty.

There is also a Living with Alzheimers course you and your mum can access

Hi betty - a different perspective for you. I have Alzheimers and an early diagnosis. I am on medication.

Advantages: planning for the future and all the things other posters have said. Putting LPA's in place, getting a support worker, financial advice, housing advice, carers groups for husband, I have a DNR in place.

Posters on other forums know I am a glass half full person and and implementing plans for things I want to do whilst I still can. I have a fuckitbucket for things I no longer either want to do, or can't do.

I live in the moment. My only concern is the burden my husband will ultimately have to bear but my POA firmly states measures to take.I have made sure everyone is aware on my diagnosis so there are no elephants in the room, and my behaviour on 'iffy' days is understood.

I do not underestimate the shock of this for you. Please get help and support

It is the Dementia which is the problem - not the diagnosis
While sadly there are as yet no cures for dementia, an accurate diagnosis will inform what future treatment your mother gets and help you to make the right decisions for her and your future.
You ask what good comes out of knowing?
This you will find out. Practical considerations, such as the Council Tax reduction being just one.
Hiding your head in the sand does neither of you any good.

I’m so sorry you’re going through this.

If you haven’t already, please have a look at the Alzheimer’s Society Talking Point forum, for carers of people with dementia. Whatever you’re going through, someone else will have been there.
There aren’t often any easy answers, but at least you can let off steam to others who know exactly what it’s like. People who haven’t lived with dementia so rarely do - though all too often they like to think they do!

Personally I found Talking Point a lifeline - I’ve been through it all twice, with both FiL (vascular D) and my mother (Alzheimer’s.)
All the best.

Oh Betty that is awful for you and for your poor Mum. It's a horrible illness, I suppose the only advantage to knowing is that you can prepare yourself for what is to come. At least you'll have a better understanding when she behaves in unusual ways and will be able to help her better.
It is an awful burden for you but you can reach out for help on here, to the Alzheimer Society and to your family and friends.
When my Mum began to behave oddly, over twenty years ago, doctors told me she was psychotic and I should involve police and social services. We had a horrid couple of years before it was recognised as Vascular Dementia. If I had known earlier we could have avoided the awful time before.
So perhaps that's what people meant when they said it's better to know.
The time ahead will be difficult for you, please don't try to cope alone and be patient with your Mum as she struggles through.