If you’re a carer of any sort, whether you’re a parent of a child with extra needs, part of the squeezed middle who is looking after children and elderly relatives or looking after a disabled partner, you could benefit from respite care. According to The Carers Trust there are around 7 million carers in the UK and this number is rising continuously. That means 1 in 10 of us are carers. By 2030, the number of carers will increase by 3.4 million (around 60%).
What is Respite Care?
In simple terms, it’s giving you a break. If you’re a carer to anybody you’re often needed 24/7, or a good portion of it. Even if you don’t look after your relative or friend in your own home, it’s often a daily job with no break. Respite means just that – to give you some time off and relief, a helping hand and for someone to take over for a while so you can recharge your batteries and become a better caregiver. The respite care can be planned or as an emergency and can vary in time from just a few days to longer as required.
Is it for me?
I first came accross respite care when my Nana got Alzheimer’s disease. My parents were looking after her, as she was already living with them when she started to decline. It got too much for them in the end, and she eventually went full time into a care home where she sadly died from the disease. Before she went full time into the care home, she had regular away breaks at a care home, a few days or a week every couple of months, giving my parents a much needed rest and time to themselves. I was on the outside looking in, in my early 20s at the time, and at first it was ok for them to look after her at home, but when she started having respite, I began to see how hard it was for them, and I thought she should have gone full time before she did. It’s such a difficult decision to make though, plus there are financial implications. I saw her personality, so vibrant and loving normally, slowly disappear so that when she died she was a shell, nothing left. So cruel.
The second time I have benefited from respite care is with my daughter, Amy. Amy suffered from Tay-Sachs disease and died just before she was 3 (you can read the story here if you haven’t already). When the word ‘hospice’ was first mentioned, I like many people shuddered and just thought of death, it was where she would go at the end of her life. What I didn’t realise was how happy that place was and how caring. It was and still is completely charity funded – without the generosity of others it wouldn’t exist. Amy stayed there with us and on her own with the care and support of the nurses and care workers there. Those regular respite days she had were so important to mine and my husband’s sanity, giving us a break to just be. We knew she was in the best hands and could relax knowing every aspect of her care was in place.
These examples are two ends of a spectrum, but there are many layers in between. Think about the husband caring for his disabled wife, the children so often caring for a parent and the wife caring for a husband with dementia. All of these could benefit from respite care. So many of us just soldier on because we think it’s what’s expected of us, but if we cut ourselves some slack we can be better placed to carry on. In a survey conducted by The Carers Trust, carers providing more than 50 hours of care per week are twice as likely to report ill-health as those not providing care. Carers providing high levels of care were associated with a 23% higher risk of stroke, and 17% of carers who had taken a break of more than a few hours experienced mental ill-health compared to 36% of carers who did not have such a break since beginning their caring role.
Can I afford it?
According to The Barchester Care Homes Respite Care Guide, respite care is not provided by the NHS, something I find shocking when it is so needed and could prevent a lot of people reaching breaking point. It is possible to get help with costs (including covering the full cost of care in some cases) from your local council or through increased benefits. An assessment helps people explore what type of respite care is most appropriate and the options available. The Care Manager will also carry out a financial assessment, sometimes called a ‘means test’, based on income, needs and expenses. They will work out what support is available on that basis. For a small number of individuals in the more advanced stages of dementia, the NHS may provide short-term care. Both your local authority and your council may provide support for residential care through a direct payment. Advice on direct payments is available on websites or through organisations like Age UK and First Stop, both of which offer free telephone advice lines. They will also offer guidance on respite care and help generally. Certain charities (such as Independent Age and Turn2us, for example) may be able to assist with the financial aspect of respite care, particularly for those living with dementia.
Where to Choose for Respite Care
There are so many places it’s confusing, there are care homes specifically for respite care, ones that are more for residential needs and homes with facilities for more complex medical needs. Do your research, speak to residents if possible and read reviews. Speak to friends and family to see if anyone else has experience you could benefit from. The council and social services can also help you to choose. If the person who you care for has a terminal condition they could qualify for respite care at a hospice.
I hope this has given you something to think about, whether you’re a carer now or not, most of us will, at some point in our lives experience it either directly or indirectly. If you know someone who may benefit from respite care, share this post with them.
Disclosure: this is a collaborative post. All opinions are my own.
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