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Hi - Carers UK Forum


Tell us a bit about yourself here.


My name is John I am 53, I care for my wife Liz who is 46 and has a degenerative neurological disease. :)

I have to admit to being very frustrated with our local council :evil: at their failure to support me in caring for my wife, and failing to support her while she struggles with not only her own deteriorating functioning but also the deterioration in her mental health as a direct result of their failures of providing what we require.

I have Aspergers syndrome and a chronically damaged back :roll: , I do get tired at times. I love my wife with my whole heart and I enjoy caring for her. I am just sad that the services do not appear to appreciate the time and effort that caring for your loved ones involves.

I have found charities much more helpful and approachable, especially as we both have had to leave work, we say retired to save our blushes! :blush:

It was during an open day run by the ambulance service :D that highlighted this website as well as a number of others services, like the British Red Cross :D , who are now providing me with a manual handling course and have signposted me to further services.

I am watching the election with interest as I have to admit to having strong views on the lack of social care available especially in our area. There appears to be a gap, if you are older the services are provided or advocated for, but those who have younger and disabled fall through the gaps!
Hi John and welcome,
I too take care of my other half who has early onset dementia, and yes I agree there is a huge gap in care services and support for our age groups( 50's) Carers Uk have been and continue to be a superb place for advice, support and understanding for me, sometimes a real life line when things get tough and you feel alone. Just a thought... have you and your wife had a care assessment done from social services? they are not just there for the dysfuctional problem families.
We also use the term "retired" haha as yes it is embaressing sometimes as hubby does not look disabled/ill. well he is slower moving and his thinking is laboured but people do not notice. I look forward to chatting with you here and don't be afraid to rant at frustrations or ask advice as there is a wealth of knowledge here. Recommend you read over back topics that are of interest to you, gives you an insight into other carer issues.
Hello John & welcome to the forum.

As Petal will confirm, caring for someone with any type of cognitive impairment is very very difficult, not least because many people, including plenty of so-called professionals, don't, or won't recognise the condition until it's so severe it hits them in the face.

You'll find a lot of useful information, people who can fully understand your position & feelings who are willing to help & share their knowledge with you so please ensure you get the most out of being a forum member.
hi and thank you for your responses.

Thank you for the advice and yes Liz has had four assessments by social services and we are now in the throws of a full complaint as they are resistant to assisting, they are doing some adaptations, we have had our drive concreted as Liz was pitching out of her wheelchair as she went up it, but I had to replace our hob and cooker with a induction hob and new cooker made at Liz's height in her wheelchair, this had not been identified as an issue even though I was witnessing Liz burning her hands regularly - I would walk in the kitchen and see her looking at her hand wondering why her skin had changed colour.
They also made her bath/shower naked in front of them which was degrading.
She has a PEG tube to feed through and during her assessment they wrote down but never questioned her as to why she had a pie on the side! her PEG feed is for top up nutrition so she can still eat, but when reliant on the PEG during an exacerbation I have to eat too!
They always assessed first thing in the morning and this means they fail to see how she functions the rest of the day, especially as she fatigues easily and can end up back in bed for long periods.
Has anyone else had issues with getting direct payments? we were told they are hard to get in Wales but pay well, but in England it is the other way around.

We rub along well enough, but I face heart surgery and obviously long term I will need breaks to enable me to carry on! I asked for an carers assessment in February but I am still waiting to here back!