Hello, My name is Penny My 28 year old daughter, has a brain injury from Encephalitis she ‘caught’ 3 1/2 years ago. She now lives at home with us, her parents. Her main problem is that her short term memory is severely impaired so she needs support for all her daily activities. I work part-time and my husband is her full-time Carer. I struggle regularly as I take on the main caring role because my husband seems to struggle with this. He is quite happy to leave her to do her own thing which can result in her routine being disrupted. It also means she is not being given enough support to develop her on-going recovery. My husband and I discuss these issues but he says she is happy so leave her be. We have been told by her Neuro clinicians that she needs to be supported and challenged mentally to fulfil the long life she has ahead of her. I think my husband has got over his initial denial of her illness but it is very frustrating that he sees little point in progressing her recovery. I have had advice from her Occupational Therapist, our Carer’s Assessment and various other professionals. However, it seems that it is our job to work together with our daughter. But, as I said, it mainly falls on me.
Not sure how to proceed to enable our daughter to have a full, meaningful and mentally stimulating life.
Any ideas would be most welcome.
My son was brain damaged at birth, now 39, living in his flat with carer support, as my health is now shot!
When did your daughter last have a Needs Assessment from Social Services, and you both, a Carers Assessment? Updated within last 12 months?!
Is your daughter receiving any disability benefits>
Thank you for that.
You have reminded me we are probably due a Carer’s Assessment as the last one was 2 years ago. Same for Needs assessment. I do know my husband was very reluctant to have a Carer’s Assessment so will no doubt probably not go for another one though I shall.
RE: the Needs Assessment - nothing has been followed up even though I have chased it a few times !
My daughter gets PIP.
Hi Penny, assessments should be updated AT LEAST once a year, so make a formal complaint to the LA Complaints Officer, rather than the local office. It’s easy to do online in Hampshire, by searching for “Adult Services Complaints”. Hopefully similar in your LA area.
Hi Penny,
I don’t know much about your situation, so this suggestion might be rubbish, but as a lot of your stress is from juggling work and caring and the fact that your husband although caring for your daughter isn’t enabling her rehab. Could you and your husband swap roles? He get a part time job and you be the fulltime carer?
Melly1
I agree!
Sadly, blokes often seem a lot more ‘cavalier’ about things, and often take the ‘easy way out’. Sounds like your hubby CBA to exert himself as much as his daughter needs.
I think men do find it ‘less natural’ to be ‘hands on’ about their family.
So if HE could head off to be the breadwinner (traditional male role etc etc!) then YOU could focus on what your daughter needs.
Men are often ‘lazy dads’…
(That is NOT fair I know on the highly dedicated fathers that DO exist, but it does seem to happen a lot - your husband probably thingks yo uare fretting and fussing and mollycoddling etc etc…)
Thanks to all for taking the time to reply. Very helpful and supportive.
I understand the comments regarding SOME men seeming to take the easy way out; that is definitely the case here so I just need to accept that and ‘work’ as positively as I can with that.
I have organised another Care Assessment for my daughter, so that is in place.
I have been told that Assessments only need to be done yearly IF, and only IF there are any changes. This includes Carers Assessment.
Regarding swapping the caring role. My husband is not at all keen to take on any employment so swapping roles is not an option. I do benefit from working part-time so I will make sure I can manage to continue to care for my daughter along with fulfilling work commitments.
Hi Penny
I suggest that at the care assessment you stress that her recovery isn’t progressing under the current arrangements and she needs more outside input/help.
Hubby can still be her carer for 35 hours to qualify for his carers allowance but that still leaves many hours a week where she could go to day centre or other activities or therapy that would be of benefit to her
Btw what you were told is wrong. Care needs assessments should be reviewed annually, its stated so in the Care Act 2014. If the review outcome is “nothing has changed” then so be it, but the review should still be done annually.
Many councils and social workers are trying to shirk duties because of workloads and costs. Many of us have to fight and demand the help we are entitled to. Don’t let them walk over you, not hubby neither.
Kr
MrsA
"My husband is not at all keen to take on any employment "
No, I’m sure he isn’t! He Can’t be Axxxd to look after his daughter properly, so he certainly CBA to get off his backside and earn any money!
He sounds a lazy git. Is he worth the space he takes up???
Sorry if that’s unfair, but if the way you describe him is true, he doesn’t have many (any?) redeeming features!