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