How does anybody get genuine, meaningful help?

Rosettastone57

Registered User
Oct 27, 2016
1,871
0
My experience is that unless a person sees dementia in action , the general public haven’t any idea of what's involved. That includes some professionals . My mother in law had a history of mental illness way before the dementia diagnosis and refused to engage with professionals. We didn't involve social services at all, she was self-funding so we just got on with arranging everything ourselves.
 

CoastalPair

Registered User
Jan 26, 2022
17
0
I guess I touched a nerve…

Thank you to everyone who has shared their experience. It is deeply saddening to learn that so many people share the same experience, it is not a club any of us wish to be in… and yet here we are.

The first post I publish here was entitled, ‘Standing on the edge of the abyss and screaming,’ since then, thanks to the caring professionals, the abyss has got wider and deeper and the screams are just fading echos.

One tries desperately to explain to the professionals that regular sleep is impossible.

Alzheimer’s is like the energiser bunny, at night time they just keep going and going.

I have lost count of how many times I have said to the professionals that if the sleep issues could be sorted then coping and providing care would be much easier. I would be able to cope better, and provide a more rewarding daily experience for my wife.

But they don’t listen, and they do nothing.
 

annieka 56

Registered User
Aug 8, 2022
332
0
I guess I touched a nerve…

Thank you to everyone who has shared their experience. It is deeply saddening to learn that so many people share the same experience, it is not a club any of us wish to be in… and yet here we are.

The first post I publish here was entitled, ‘Standing on the edge of the abyss and screaming,’ since then, thanks to the caring professionals, the abyss has got wider and deeper and the screams are just fading echos.

One tries desperately to explain to the professionals that regular sleep is impossible.

Alzheimer’s is like the energiser bunny, at night time they just keep going and going.

I have lost count of how many times I have said to the professionals that if the sleep issues could be sorted then coping and providing care would be much easier. I would be able to cope better, and provide a more rewarding daily experience for my wife.

But they don’t listen, and they do nothing.
 

annieka 56

Registered User
Aug 8, 2022
332
0
I totally agree.
I vividly remember 3 years ago standing in a park on a sunny day with my husband who has dementia and our dog, being sleep deprived thinking I don't even know how I have driven here. I rang the GP and amazingly spoke to one but who wouldn't prescribe anything and re referred to the Memory Clinic/Older People's Mental Health Service. Things did move quite quickly after that.
Fast forward to February this year and my husband had 4 weeks respite which was a blessing but I still couldn't sleep without waking up around 3 am with a feeling of dread.
Now he's sleeping better but incontinent so that change goes on in the night strangely around the 3 am mark after which I try to sleep a bit more but it's not easy.
Lack of sleep is horrendous, I actually feel my husband will outlive me at this rate.
 

Kevinl

Registered User
Aug 24, 2013
6,706
0
Salford
Oh not you, you will survive to paraphrase the song lyrics go, stay strong all here to listen. K
 

windyhill

Registered User
Dec 9, 2023
30
0
81
How does anybody get genuine, meaningful help?

Help that improves the life of the full-time carer and doesn’t just pay lip service.

As my wife’s carer, I have to live in the real world while juggling the surreal unreality of her behaviour.

Everything ordinary people take for granted has gone by the wayside or has become impossible.

We had a visit from the CPN from the memory clinic; we hoped this was progress and a positive move.

We provided a detailed written account of the current symptoms we face daily. We provided a written account because discussing it in my wife’s hearing leads to upset and agitation.

It wasn’t read, just ignored like every other entreaty and request for help.

The CPN said there would be a review meeting with the consultant the following Friday - we made a particular point of asking for feedback from that meeting.

So far, we have heard nothing!

No surprise there. Are they just incompetent, or do they not care enough to communicate?

Why is it that the medical profession treats people living with Alzheimer's with such utter contempt?
 

windyhill

Registered User
Dec 9, 2023
30
0
81
I share your bewilderment.
Unfortunately we are all in the same boat. Money talks and if you have the money you can solve any problem you have. It doesn’t always get you competence and efficiency, but at least it does get you attention. There are so many combinations and permutations of various working bodies it is difficult to get your head around where to go for help.
As an example some weeks ago I made a provisional enquiry (planning some way ahead) about respite care for short periods in a care home. At £1500 per week my phone rang off the hook for days from care homes vying for business. Making the same enquiry through the local services got no interest whatsoever. The local services are patchy in their efficiency - they have some good people and many not so good or interested,
As for doctors, they appear to have little training in mental health problems. Our surgery seems to be populated by female doctors working only 1 or 2 days per week who make no secret of the fact that they are part timers and their main duty is to bring up their own family. It is a far cry from what doctors did even 30 years ago.
The whole mental health system and care industry needs a complete shake up - but then we’ve been saying that about dentistry for over 25 years and nothing at all has been done. Dentistry should have been easy to solve so don’t expect a lot on mental health which is becoming a minefield.
 

Chizz

Registered User
Jan 10, 2023
3,786
0
Kent
How does anybody get genuine, meaningful help?

Help that improves the life of the full-time carer and doesn’t just pay lip service.

As my wife’s carer, I have to live in the real world while juggling the surreal unreality of her behaviour.

Everything ordinary people take for granted has gone by the wayside or has become impossible.

We had a visit from the CPN from the memory clinic; we hoped this was progress and a positive move.

We provided a detailed written account of the current symptoms we face daily. We provided a written account because discussing it in my wife’s hearing leads to upset and agitation.

It wasn’t read, just ignored like every other entreaty and request for help.

The CPN said there would be a review meeting with the consultant the following Friday - we made a particular point of asking for feedback from that meeting.

So far, we have heard nothing!

No surprise there. Are they just incompetent, or do they not care enough to communicate?

Why is it that the medical profession treats people living with Alzheimer's with such utter contempt?
Hi @CoastalPair
Reading your post I assume you are seeking help for you as carer, not help for your OH. Most replies and "the system" so far as it exists, which is v little, refer to help for the PWD. I'm replying so far as the carer is concerned, from my personal 7 year experience.

When my OH was diagnosed some years ago, the Memory Clinic made a referral to our Local Authority Adult Social Services. They sent someone round, after an initial telephone chat, to carry out a care assessment and a carer's assessment. Talking about my needs, limitations, and possible help they finished the chat by saying they would need to do a financial assessment. I said why? I thought the help should be based on need. They were quite straight and honest and explained to me:
- they do offer help for a PWD but their budget is v limited, so it has to be means tested to try and reach those who are worst off financially. As a result of my saying my OH has savings above their limits, they quite openly said, well in that case you're on your own.
- they did offer 3 hours respite per week for the carer, which I took up. They provided this via the charity Mind. However, last year they announced that this help would now be means tested. Thus, if I want this to continue I would have to pay. As that was the only help offered to carers in my area, I am now in their words "on your own"

Our GP explained that dementia - all forms - is regarded as a physical illness, where the brain malfunctions, and is not a mental illness. He also explained that under the NHS for physical illnesses, there is supposed to be help free at the point of service, but dementia is the only physical illness where this NHS principle does not apply as NHS offers absolutely zero care / treatment/ help for dementia other than possible prescription drugs where they might apply. (Actually, not entirely true, as NHS also offers no help whatsoever (other than prescribed drugs where appropriate) for Parkinsons' (and similar), CBD, and possibly MND.)

Thus, the answer to your question / plea "How does anybody get genuine, meaningful help?" is that there is NONE! Welcome to our caring society!

Bes wishes
 

annieka 56

Registered User
Aug 8, 2022
332
0
Having just replied on a thread I started saying I was going to contact social services, I then read this..Not very encouraging!
But you should contact adult social care. Many people probably find them helpful.
What are the alternatives? You can't do it all on your own.
Just keep a note of who you spoke to etc and when.
Good luck.
 

Chizz

Registered User
Jan 10, 2023
3,786
0
Kent
Hi again @CoastalPair
Having said what I posted Weds, Adult Social Services did give me a booklet with lots of info about care services companies, care homes, and various charities that offer groups, to help.

Well after some years of trying to do everything for my OH 24/7/365 it all became just too much. I wanted and needed sleep, and if I was going to do nights, then I decided I needed help in the days.
I spoke to the occupational therapist at the LA health care team. She made some suggestions for home care from her experience. I always like trying to get recommendations, if poss.
The result was that I contacted 3 or 4 care companies to chat to, see their attitudes, their services, their charges, etc. Most wanted to come round for a face to face chat, assessment of my OH, the home lay out etc.
The result of that was that I started one company to come to carry out personal care for my OH, 2 carers (for any lifting, rolling and turning, and for operating the hoist, etc) 3 visits per day. So far they've seemed mostly satisfactory and I've had them coming since Sept 2022, They come round for my feedback about every 3 or 4 months.

If you need help, get it. If you think you can always do everything on your own, you'll end up as a patient if you're not careful!
 

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