Demential without diagnosis

[wornoutbattling]

Hello all,

It's coming up to three months since my lovely Mum passed away, cause of death "end stage dementia".

I'm still at the stage of just putting one foot in front of the other to at least keep moving, but I'm finding it a million times more difficult to deal with than I could possibly have imagined. The grief, the loss, the guilt, you name it ...

I'm wondering if anyone else experienced their loved one "having dementia" (thus referred to by hospitals, GPs, etc) but there never actually being an actual diagnosis of dementia?

When it was announced sometime last year that GPs were to be given a bonus for diagnosing dementia, I was surprised because I already thought GPs were given a bonus for NOT diagnosing it, so reluctant was Mum's GP to address the question. In not giving a diagnosis, it meant Mum missed out on possible medication to slow down the progress, and she also missed out on attending such things as memory clinics, which I believe is what happens once a diagnosis is arrived at. She was given absolutely no support with her dementia either medically, socially or psychologically.

Each time I asked her GP to come to visit Mum, he was quite casual about Mum's state of mind, and addressed her "forgetfulness" in what he obviously thought was a jovial and light-hearted manner.

His rule of thumb was whether Mum knew that when it went dark she needed to go to bed, and whether she knew in the morning that she needed to get up. She did go to bed and get up because the carers came at these times. When he asked the usual "what's the prime minister's name" type of questions, and she had no idea, he just said, well, who needs to know that anyway. I pointed out that unless she was prompted she had no idea what she should be doing, or when, but he just seemed to do the medical equivalent of putting his hands over his ears while humming a tune.

I definitely got the impression over time that to diagnose dementia would have taken up too much NHS and social services times, and that the GP was unofficially discouraged from doing it. At this stage Mum was in sheltered accommodation.

Am wondering if anyone else experienced the same from their GP?

Best wishes to all,
wob x

 

[Sue J]

Hi Wob

Sorry to read of your Mum's loss, and the struggle andcsuffering for both of you.

I continue to struggle to get a diagnose or proper investigation of my symptoms. They started aged 49 and I refused to attend a Memory Clinic for the over 65s, so I became a 'non engager' - constantly asking for help and not getting any. After 4 years I got/get psychological help which has then taken over another year to communicate something of the extent of my symptoms to the GP. One GP said why do you want further tests to find out what we already know! he never mentioned dementia but I do talk, about my dementia symptoms and continue to need help, support to get listened to.

My heart hurts for all those left without support and help.
Best wishes to you
Sue

 

[wornoutbattling]

Thanks so much for your posts.

Sue J, I can identify with you when you say you're still struggling to be listened to. In my experience trying to get the right help takes over your life and saps you of the strength that could be better used in actually dealing with the proper issues.

Kassy, our mums' situations sound so alike. As you say, eventually you start referring to "dementia" and the medics don't question it, they just nod and go along with it, but no-one seems to read the notes. They seem to accept "dementia" as a kind of norm for anyone over 65. It's rather damming on them that none of the medics asked "which form of dementia" when I referred to it. Shouldn't they have wanted to know, so they could know how to deal with Mum?

I gained the impression that the medics (by that I mean her GP, hospital doctors and nurses), and the social workers (as feeble as wet lettuce leaves) who carried out various needs assessments, felt they could officially file Mum as "an elderly lady", and that was all they needed to say on the topic. It was as though the diagnosis was "elderly lady". It was almost "Well, that's old age for you." - actually I think their diagnoses was "elderly lady with daughter carer" - every time I asked for anything help-wise, or queried why the promised help hadn't materialised months later, I was told "Well we know she's got you."

Now I've got some time on my hands, I think I may start researching this whole business a little more.

wob
xx

 

[Sweet]

My lovely mum 92 passed away nearly a month ago and I feel that I now keep looking back over the last 3.5 years to the start of the illness and lack of understanding and support I received to help mum. If only I had known about this forum from the outset. I thing GPs should point everyone to it.. I would have understood things a lot quicker!

It all seems rather vague how mum was diagnosed. I think she was treated as 'elderly lady with daughter' too. I don't think it was recognised by her GP or my siblings. I went a long time knowing something was very wrong but not really knowing what to do about it. She was prescribed anti depressants, (she had never been depressed before).... It was taken more notice of when we became a nuisance and I would call the out of hours Dr and generally push for some recognition of it rather than just old age! She did get a diagnosis of vas d. in the end when she had a spell in hospital for a UTI and was hallucinating. ( I didn't know anything about UTIs in the elderly either!)I feel there could be so much more practical help to 'educate' new people to this illness and save a lot of stress and I could have helped my mum better because I would have understood things more, but I felt fobbed off most of the time.

So wob I don't feel afraid of dementia as I first did because it was so bewildering, more annoyed that I wasn't better informed from the start... Good luck with your researching!

 

[Solihull]

My mum is 91 and she was taken in to hospital last year with malnutrition, dehydration, memory loss etc, I think you all know the other symptoms, (which she had for a few years) When I refused to let her go home, even though I had looked at her notes which clearly stated"dementia", I was told she was ok, dementia was never mentioned & that for 91 she was doing well. The social worker interviewed her and assessed her as being "pleasantly confused" and as this was the only diagnosis I have ever had for her, she went in to a care home. She is doing very well there along with others who are at a similar stage. It is not specifically for dementia patients but I too am still confused as to how bad you need to be before a "diagnosis" and what the financial implications are to the NHS if you are. Wornoutbattling please do not blame yourself for anything, you did your best, it is all we can do.
Sue P
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