Joan cares for her son Anthony who lives with her and has a brain tumour, epilepsy, learning difficulties, depression and mental health issues, including paranoia and a “reduced mental capacity to understand”.
Joan also experiences her own medical condition and has undergone a series of operations, which have had a significant impact on her life and has resulted in her taking a lot of medication.
Her son requires a high level of care and supervision including: administering his medication; organising his clothes and assisting with any fine motor activities which he finds difficult (ie fastenings and shaving); preparing all his meals; helping with personal hygiene (he can experience incontinence – including night time support); organising all his personal and social activities and providing transport; accompanying him to all appointments as he experiences short term memory loss and sometimes doesn’t understand what is being said to him; providing company for him (if left alone for more than about 30 minutes he become very paranoid and agitated) and maintaining all household tasks.
She reports that her son is currently seeing 3 different consultants and 2 different nurses every month and has a support worker who is scheduled to take him out for 3 hours a day for 3 days a week Joan also cares for her elderly parents as much as she can, but this is limited due to the caring role she provides for her son.
Joan has been taken off ESA and is now on universal credit of £194 plus her carer allowance. She has found it a struggle and has tried to appeal with the help of Citizen’s Advice, but to no avail. Her elderly parents help her out financially which she doesn’t like.
Joan experiences feelings of exhaustion and overwhelming tiredness. She is concerned for the future for all the people she cares for and is extremely worried about her financial situation. She reports she feels “awful” asking her elderly parents for financial help, but that without it she wouldn’t be able to provide the activities her son requires to manage his condition.
She reports she can’t afford to go out herself or on holiday and that the only time she has to herself is when her son goes out with a support worker. “If he doesn’t go out or the support worker is ill, then I can’t go out either”.
Things We did
A Carers assessment was completed with a recommendation that a personal budget is awarded to enable the carer to take a break away from her caring role. Joan hopes to have an “overnight stay somewhere with a nice meal or spa weekend for a treat”.
How It Helped
Joan reports that without the support of DCA and without the award of a personal budget she wouldn’t be able to afford a break and would “go under”.
Advocacy Questionnaire 2021
Are you a family carer of an adult with learning disabilities or of an autistic adult who is or has ...Read more
Want to be more computer-confident?
If you don't yet use computers, or want to get more out of your computer, DCC libraries service is i...Read more