Help needed

[mydad]

9 years ago I used this forum when my Dad had dementia. At the time i couldn't believe how little research and knowledge there is about it. No cure, no medicine, families just being left to fend for themselves. Oh and apparently dementia is a social not medical need so no financial support either. 9 years on and i'm back here now to ask questions for my Mum. I found this the most helpful place last time around and i'm hoping you can help me again.
My Mum is going through the process of being diagnosed but it is taking months. She has been referred for a CT scan but no date yet. Her symptoms present very differently from Dads. She has more of a mental illness like schizophrenia or paranoid delusions. she hears voices. They often tell her people are coming to get her or that someone close to her has died. This is resulting in her leaving the house at night. Searching the streets or going to someones house so that 'they ' won't get her.
Does anyone know how we can speed up the diagnosis and also whether anyone takes it seriously that this is not 'just dementia'. If she were 30 years younger i'm sure they'd be treating this differently. We have no medication at all. she is fretful all the time that someone is coming to kill her. Any help ?

 

[Jale]

Can your Mum's GP not step in and speed things up. Sorry have no experience of these symptoms but hopefully someone will be along to offer help

 

[mydad]

They seem happy that she is in the process. But each step is 4-6 weeks. They also seem happy that she is in the dementia process and unwilling to address the fact that its the paranoia/fear/psychosis that we are worried about.

 

[canary]

Hello @mydad abd welcome back.

Different people with dementia will have different symptoms, although there is a sort of spectrum. My mum had Alzheimers and now my OH has frontal lobe issues and his symptoms are quite different as his problems are not so much on the memory side, but more of a problem on the behaviour side.
it sounds like your mum is having problems with hallucinations and delusions. She may have a different type of dementia than your dad. At this stage i wouldnt go looking for other things.

 

[mydad]

Yes i am sure she has. Hers is more like Lewy Bodies than Vascular. However, what i don't understand at the moment is why it takes so long to get a diagnosis - she is going downhill fast with no medical support at all. They estimate 5 months from doctors visit to diagnosis - that is a long time for the illness to progress. Also the research is so woolly on dementia generally, i have not read anything that makes me think there is an in depth understanding fo the difference fo the forms, let alone difference with other mental illness. It simply seems to be that after a certain age they put you in the dementia category, rather than mental illness.

 

[DollyBird16]

Hi @mydad
My heart goes out to you.
My Mum has vascular dementia and has the same thoughts, that these people are going to kill her or dump her somewhere. The people hide around where she is staying (her home for the past 40 years) She hears but doesn’t see the people and can’t really describe them.
She has been diagnosed and she has a very caring mental health doctor (mhd), who has prescribed Sertraline, it hasn’t taken the behaviour/ delusions away but appears to have reduced the frantic anxiety.
The gp is no longer involved in Mums mental health given the mhd, having responsibilities for this now.
I agree with above the gp needs to step up and help, as they still have responsibility in the absence of mhd.
I know it’s so difficult chasing down all the professionals (?) but worth reaching out to social services too. I’ve learnt it’s he who shouts loudest. Ok no need to shout but start nagging, letters, phone calls, don’t accept yes we’re on it, ask when and who.
Sorry got my bossy head on tonight, long workday, tough care night, preaching what you know.
Great advice I got here was to take your Takking point pals with you (virtually) to every phone call / meeting etc, you know we are with you. It made me feel so strong and I never want to let Mum or my TP friends down and boy is it empowering. Especially as you know your right. Your loved one deserves the care as do you.
We’re with you. X

 

[nitram]

Her wandering at night means that she is a vulnerable adult at risk and the local authority have a legal duty to protect her.
Tell the LA about your concern, they may not do anything but it will build up evidence that she needs diagnosis and help.

You could also prepare a Herbert Protocol sheet that can be given to the police if she wanders to the extent that she has to be reported as missing http://www.gmp.police.uk/live/nhoodv3.nsf/triage-category?ReadForm&l2=86365&l3=40081
It's a national scheme, the link is to the GMP information, the local police should have one, if not use the GMP form.

 

[Lindy50]

Hi @mydad
I agree with you that there is an appalling lack of resources allocated to both research into dementia and treatment and support for patients and carers. The length of time it takes to get a diagnosis does vary and I agree with posters who say that you need to contact your mum's GP as well as any specialist team. Keep them updated on mum's condition and stress that she is not 'only' distressed, she is a vulnerable adult at risk.

Has your mum had a needs assessment from social services? If not, it would be a good idea to get one, again stressing her vulnerability and risk, otherwise you may also find yourself waiting for that assessment too.

It is a totally unacceptable situation. When my mum finally did get a diagnosis (of vascular dementia) we were still offered little support in this area. You really do need to keep pushing.

Thinking of you and wishing you and your mum all the best.

Lindy xx

 

[mydad]

Thank you all so much. This has really helped, And also to get some practical tips. I just want to do something for her and i'm still in the state of shock at how little the health services and social services actually do. Will get on with the Herbert Protocol as i'd never heard of that and keep pressing the GP.
thanks again.

 

[kindred]

Yes i am sure she has. Hers is more like Lewy Bodies than Vascular. However, what i don't understand at the moment is why it takes so long to get a diagnosis - she is going downhill fast with no medical support at all. They estimate 5 months from doctors visit to diagnosis - that is a long time for the illness to progress. Also the research is so woolly on dementia generally, i have not read anything that makes me think there is an in depth understanding fo the difference fo the forms, let alone difference with other mental illness. It simply seems to be that after a certain age they put you in the dementia category, rather than mental illness.

Interesting about the time taken to diagnose. It's yet another delay because no diagnosis no benefits, such as they are. It's all delay isn't it. All sympathy. Kindred.