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Is diagnosis of dementia a good thing

(29 Posts)
Betty65 Fri 28-Aug-20 21:45:33

My mum has vascular dementia, everyone has said to me that I need this diagnosis in order to move forward.
At the moment it feels like another burden to carry.
Why is it a good thing. What good comes out of knowing. What happens next

annsixty Fri 28-Aug-20 21:56:10

There are advantages to having a diagnosis as it is a trigger for certain things to be set in motion.
You would be able to access the memory clinic so drugs to slow the process can be prescribed.
They do help at the start.
You will have a Mental Health nurse assigned ,if you are lucky, who you can discuss things with and can help as things arise which you are not expecting and need help with.
If two people live in the house a diagnosis can get a reduction in Council tax.
As things progress which sadly they will, you can access incontinence products free of charge .
It will only help I believe.

Londonwifi Fri 28-Aug-20 21:59:43

Sorry to hear that. First of all, yes it’s important to know and read up on it because your Mum will develop different behaviours and medical problems as she progresses through it. Knowing and researching in advance will forewarn you of what to expect and to know not to blame your Mum for acting in ways you find strange, upsetting or aggressive - it’s a cruel disease.
Eventually your Mum won’t manage her financial affairs and will need a Power of Attorney to do it all for her. This should be applied for while she understands and can sign. Otherwise things could become very difficult for you. She should also make a living will too which will mention her end of life wishes etc.
Think about whether you can care for her or whether her medical needs will require nursing home care.
There is a whole host of things to consider with a diagnosis of dementia. Good luck.

Granny23 Fri 28-Aug-20 22:05:35

You need an official diagnosis in order to access things like Carer's Allowance. Attendance Allowance, Reduction in Council Tax. Also required to qualify for a Blue Badge. There is no cure for Dementia but medication that may slow down the progress, or alleviate some symptoms (e.g. Anxiety) will only be prescribed once there is a formal diagnosis. There is no need to make a big deal of this with your Mum, who will soon forget the diagnosis as the dementia advances.

As always, please access the Alzheimer Society's web site and Talking Point Forum for support and professional information and advice. In spite of their name they encompass all varieties of Dementia.

You have a long, hard journey ahead and will need all the information/support and advice you can muster.

LauraNorder Fri 28-Aug-20 22:09:01

flowers 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.

Witzend Fri 28-Aug-20 22:10:23

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.

MawB2 Fri 28-Aug-20 22:25:09

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.

Izabella Fri 28-Aug-20 22:43:18

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

Izabella Fri 28-Aug-20 22:43:55

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

justwokeup Sat 29-Aug-20 02:16:52

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.

kittylester Sat 29-Aug-20 07:53:28

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.

BlueBelle Sat 29-Aug-20 08:23:22

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

sodapop Sat 29-Aug-20 08:39:53

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 thanks

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 thanks

Liz46 Sat 29-Aug-20 08:45:03

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.

Liz46 Sat 29-Aug-20 08:47:00

Izabella, my very best wishes to you x

Dorsetcupcake61 Sat 29-Aug-20 08:56:42

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.

Froglady Sat 29-Aug-20 09:01:06

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.

silverlining48 Sat 29-Aug-20 09:07:51

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.

Smileless2012 Sat 29-Aug-20 09:14:27

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.


Izabella Sat 29-Aug-20 09:26:09

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.

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

silverlining48 Sat 29-Aug-20 10:44:14

Thanks for the information Izabella .

kittylester Sat 29-Aug-20 11:15:31

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.

Gwenisgreat1 Sat 29-Aug-20 11:18:25

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

Teacheranne Sat 29-Aug-20 13:22:11

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.

Izabella Sat 29-Aug-20 14:49:47

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.