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New here, fed up with 'support' systems - Carers UK Forum

New here, fed up with 'support' systems

Tell us a bit about yourself here.
Hi, I have been caring for my mother who has demetia since the beginning of 2007. Initially, just supporting my dad by taking her out one morning per week (I worked full time) to now having to care for them both in my own home and separated from the rest of my family. My dad is very frail physically but still very astute mentally at the age of 89. The last four years have been a strain on my health, work and family relationships. I reckon my caring role could go on for years, at a time when I really would have liked to be still at work, and enjoying my leisure time to the full. I am beginning to achieve a better balance but still get frustrated at the lack of 'real' support from various agencies who are meant to help. The latest niggle is that of Direct Payments to Carers. I have only just found out about them despite being assessed for my needs twice in two different local authorities. I suspect no-one really wants to pay anything out and from past experience feel disinclined to follow up the suggestion from a local society that I request an assessment for them. I will be interested to hear other peoples experiences and to receive advice on how best to get the type of support I need.
hi christine wellcome it can be very lonely but you will find help and suport if you whant a chat send a personal mesage and i will get back Image Image
Hi Christine,
It can be really discouraging to find out the very people who should be giving you advice and support have failed to do so. A lot comes down to luck of the draw and it shouldn't be that way.

I really hope you get something sorted out and you will get good advice through CarersUK.

Take care

Hiya and a warm welcome to the forum.

Hi and welcome Image
hello and welcome
Hi Christine
Im sorry for your problems, Dementia is a difficult disease and very common in this 21st C. i think the word to use is Perseverence. Try Try Try AGAIN.
It cant hurt and they cannot keep ignoring your needs.
I care for my husband who has increasing memory problems due to epileptic seizures and his medication. He is only 55.
We had Care Assessments and Needs Assessments completed by Social Services too after i requested them. Our GP was no use whatsoever. . Because of Andys intermittant problems we were told yes we could apply for Direct Payment BUT i had to use it to request care and give dates and times i would need this care.......a lot at night , some days of the week and no warning - they said NO. Im tired and very disheartened.
Problem is I dont know when Andy is to have a seizure because it happens without warning. His memory impairment meant post fits he is doubly incontinent, he cannot stand or walk or speak sometimes for hours. Its called Todds Paresis and some suffer it , others dont. he sometimes needs emergency drugs rectally , and again they said they couldnt provide that level of care. I have 2 prolapsed discs at the bottom of my spine with caring for him pre assistance. I am in pain every day ,even with synthetic morphine patches. I still have to get him off the floor, change his clothes and ensure his safety but very few people are interested in my suffering. The part of telling the GP with a Social Services form about me being a Carer has been thrown aside 4 times now and they still say they do not know im his Registered carer.
it is pointless requesting people to sit with him or do work for him in the house because i do all that.
I was told by the Occupational Therapist i could request Direct Payment for things like mobile phones or other such helps BUT i could not request it for a falls alarm allowing him 80m of space monitoring to his shed ! We live on first floor and his shed is below in our garden. He still uses it daily and has fallen many times cutting himself often. I have a good stock of emergency first aid and steristrips, eye wash and others. We were told by Epilepsy Nurse to give each other space !
We have mobiles x 3 and were told they could pay for one of those .BUT to buy a falls alarm is outside their remit.
I have been told to try Direct Payment again and im going to. Mind you it took 3 written requests by me to get the assessments done and even then the OT didnt contact us after we were referred to him. He forgot and went on holiday instead. it was 6 weeks before he did and we were told within 2 weeks he would contact us.

NO ONE SPEAKS TO EACH OTHER - Computers "the system" are blamed for everything.
I hope you have another go ,as once these payments are agreed you get them ,there is no problem.
Kindness and Friendship - Mandy Read