Budgeting when you’re a carer

When we hear the word carer, it’s often the physical or emotional impact that’s top of mind, not the financial.

It goes without saying that people with additional needs are as loved and valued as any other family member. But often those additional needs come with additional costs and financial sacrifices that might surprise many.

Rosina lives on the Isle of Man and looks after her sister, Angie

Tell us a bit about the person you care for

My sister Angie is 64 and has Down’s Syndrome, Alzheimer’s Disease and a number of other health challenges. She lives with me and my husband and I’ve been her full-time carer for 13 years. She needs near-constant support and assistance.

Has caring for Angie had a financial impact on the family?

Definitely. I worked before my sister came to live with us, but of course had to give this up. So that means we’ve been down one salary in the household for the last 13 years, along with the contributions to my pension.

What are the things you have to budget for that would surprise someone who doesn’t care for a person with special needs?

We get local government support for looking after Angie at home, but there are a lot of costs that aren’t covered.

Clothing

Because of her physical disabilities, nearly all the clothes we buy Angie have to be altered to fit, including custom-made shoes.

Supplements & treatments

Angie struggles to eat, so we need to buy supplements to ensure she’s getting the right nutrients. She also has to see a chiropodist every five weeks, something that’s not covered by the NHS.

Respite care

My sister goes to a day centre on some weekdays and we pay towards their overheads as well as for her travel to and from the centre. She also goes to another respite centre one afternoon at the weekend, which is charged to us by the hour.

Disability aids

We bought Angie’s wheelchair and pay for all the repairs and maintenance costs, as well as specialist support for things around the house like bathing and sleeping. Since she also tries to wander and go for walks on her own, we’ve had to update our doors, and remove steps and pathways which may be dangerous for her.

Lifestyle

Because of my sister’s different health conditions she can sometimes get distressed and disorientated. We’ve found the best way to keep her happy is lots of stimulation and plenty of distractions, and for her this means a constant supply of toys, music and films, especially those which are of an age gone by, such as Vinyl and Rubik’s cubes. She tends to misplace, lose and often damage items, so we’re often re-buying things like toys, eyeglasses and household items.

What would you estimate is the additional monthly cost of caring for Angie?

It’s quite hard to say as it can vary quite a lot, and with Angie’s decreasing mobility it’s only growing. But I can say it is significant, has a big impact on household spending and changes the way you run a home.

Are there any good resources you’d recommend to someone who’s new to being a carer for an adult?

I would advise them to get support from a social worker as soon as possible. It’s been invaluable having someone knowledgeable to advise me on dealing with institutions, financial support and rights for Angie and me.

 

Sarah lives in Bath and has two sons

Tell us a bit about the person you care for

My gorgeous son Danny, 15, has a diagnosis of autism and ADHD.  He is now at a mainstream state school, where he manages to access the curriculum with support from a wonderful team of special educational needs experts. However this wasn't always the case.

Has looking after Danny had a financial impact on the family?

When Danny was younger we went through a bewildering and emotionally draining time of getting him diagnosed that had a huge impact on us.

I gave up my job as a PR director so that I could spend more time investigating what support if any we could get for him.  This obviously had a big hit on the family in terms of income.

What are the things you have to budget for that would surprise someone who doesn’t care for a person with special needs?

The loss of income was compounded by spending huge amounts on special equipment for Danny: anything from sensory toys, to pencil grips, to weighted blankets to aid sleep.

There were classes, specialist tutors and in the end, when we gave up any hope of help from the state, we had to find the money for a private psychologist who gave us a diagnosis.

The final financial sacrifice was finding a specialist private school for him, which meant a family move out of London – and the job opportunities it offers - to the south west, impacting finances once again.

Are there any good resources you’d recommend to someone who’s new to caring for someone with needs like Danny’s?

The best resources I found are those on social media channels. Local groups who are very ready to share their advice and experience - they can put you in touch with others who can lend you equipment that their own children have grown out of, recommended schools that are set up to deal brilliantly with special educational needs.

They already understand the system and what you are entitled to as a carer, which is not always obvious from the official information you are given.

In hindsight, we probably made too few great financial decisions and too many emotional ones.