Hi, my mum has recently had a stroke and our lives have been turned upside down. I am living with her at the moment, had to leave my own home, husband and 2 children, to live with mum, fortunately our 2 houses are pretty close to each other.
Basically I am trying to become a paid carer for her and my head is spinning not knowing who I can speak to for complete and correct information. I have applied for the assessment with my local council with Adult Social Care for a care package and they have said they can help with 21 hours per week. Is that the best and only thing to do? I don’t even know how much this is, and they said that the employer shouldn’t be my mum as she has communication issues so my brother has said he will be the employer and forward the payment to me. The council said on the email that you can apply to DWP for a Carers Allowance but that could be effected if we accept a formal package of care.
I have been living with mum for 16 weeks now, it is 7 weeks since I applied with Adult Social Care, had several phone calls, still waiting for the relevant forms. I left my job and family to do this, I love mum immensely and will do whatever I can to make sure she’s ok but juggling the family life is really difficult, we thought this was a temporary glitch in our lives but it appears this is going to be a very slow and long journey. Any advice would be greatly appreciated, thank you.
Are the council aware you are going to be paid the DP and will be living with your Mum? Or will you be living at your house and visiting your Mum to care for her?
You can use direct payments to buy services from an agency, for example, a home care agency, or to employ a carer or personal assistant. … The local authority (LA) will not usually allow you to use direct payments to pay for services from your husband, wife or partner or from family members living with you.
Are you sure you want to do this? Would your Mum be better using her DP to pay someone else for her care and you would then have more time to for family life, work etc and could carry on being a daughter to your Mum and a “care manager” rather than doing all the care yourself?
You can claim carers allowance if you are caring an additional 35 hours a week on top of the 21 hours a week care you will be providing, but there is a limit on how much you can earn a week whilst claiming it. Carer's Allowance | Carers UK
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The council are aware that I’m living with mum at the moment but the aim is for me to move back home and go to mums to care for her. She can only be left for a couple of hours at a time on her own, she is still recovering from stroke and a very long list of other issues, but the hope is she will get stronger to at least stay on her own overnight. We have had a Call Line installed for backup when she is on her own. Neither of us would want a carer other than myself for her right now, she is struggling with anxiety and communication/speech issues and she takes reassurance from me being there - it is hard but I feel it is just what I have to do to help her.
I didn’t realise you could have the care package and a carers allowance. I will look into this but will ring the council again first to see what the hold up is there. When adult social care sent the email saying that if I applied for carers allowance it could be effected if I accepted a formal care package - I assumed it was one or the other.
I think the council might mean that if your earnings from the DP exceed £128 (there are ways round this - you can pay some into a pension, deduct various expenses etc) then you won’t be eligible to be paid carers allowance.
Was your Mum offered rehab after her stroke? Some people take this in a residential setting and some have the free care at home - it includes support from a range of health professionals.
You need to get over the “neither of us want another carer” idea, otherwise you will never have another holiday, or a life of your own, until she dies. Try to think of yourself as her care “manager”, not provider. Have you seen mum’s Needs Assessment or Care Plan from the hospital, before she came home.
What can she do for herself?
21 hours a week isn’t much.
I had been caring for my Dad for the last 2 years before he sadly died a few months ago. I left my house empty and moved in with him as he needed constant supervision. Initially the council were unwilling to allow me to be his paid carer via Direct Payments, but after appeal this was granted. It helped that I was already a self-employed PA (I already had training and insurance) but I had to threaten to abandon him and go back to caring for other people (to avoid losing my home) before they eventually caved in. I pointed out that they would have a difficult job finding carers to meet my Dad’s complex care needs, and it would actually cost them more (agency) money than paying me, and I also argued that I still had all of my household bills to pay and Carer’s Allowance wasn’t even covering my mortgage payments, so by that time (6months in) I was up to my eyes in debt and fighting for financial survival. My Dad knew I wouldn’t really have left him, but if social services think you will do it for free, their budgets force them to be cruel. Our social care system stinks, but there are some great Social Workers out there who will try their best for you within their financial constraints.
Direct Payments vary by local authority, but most offer around £12/hr, so 21hrs should give you about £250/week, significantly more than the pitiful Carer’s Allowance offering. You may also be able to get the care package increased if more needs not covered by the package can be proven. It gets complicated at this point, but many councils are now refusing to include housework, shopping and gardening (and possibly other needs) within their care package, stating that this needs to be arranged privately. However, I charged my Dad an additional £55/week for 5hrs additional essential care not covered by the council package. This was then accepted by the council as Disability Related Expenditure (DRE) (after another appeal) and deducted £ for £ from his assessed financial contribution to his care package. I learned a few other nuggets along the way, but nothing is straightforward.
The Care Act is a very powerful piece of legislation, and quite straight-forward. I used it regularly in making various appeals relating to my Dad’s care package. Unfortunately, there are not enough Care Act Advocates and support services to assist people to obtain their rights, which makes the Act quite useless for many.
Good luck with however you decide to proceed. I hope you can manage to continue to care for your Mam, if this is what you want to do. If it gets too much, you always have the option of reducing your care hours and splitting the care with another PA or an agency at a later date. Best regards, Mabel.