I worked most of my career as a secretary/PA so paperwork and problem solving was part of my job. Being organised and knowing how to get things done has helped me to navigate the various support available when you’re caring for someone.

Looking after someone we love should be a joy and should not be burden, but sometimes it is. It can be overwhelming. That is why we have respite.

Sadly, my dad and my husband have now passed away. Both died at home as was their wish and both had a very peaceful death. But I had a lot of support from a lot of different agencies and I will always be grateful to all of them.

So today there are just three of us. Me, my mum and my brother. My Mum is under palliative care and has mixed dementia and my brother has mild autism and type 1 diabetes.

In October 2021 I decided that I needed to look at the care I was providing and see if I could get further help and some respite for me.. My Mum would require more help as at that time she was in a wheelchair and needed personal care, using a hoist and all that goes with that. Also, my brother’s mental health was not good and he was suffering from problems relating to his diabetes.

I had previous experiences with [paid] Carers. Some of it good and some bad. My situation was complex because I wanted someone who could look after both people at the same time. For example, for meals. It was no good for me if someone came in to feed my mum and then I was left to see to my brother.

Eventually I was fortunate to find someone with experience and qualifications to support me with the caring role as a self-employed Carer. She was available to work for me five days a week. This is unusual but having two totally different people to care for it works for me.

Here we are today with the help of my Carer, we are able to continue living in our adapted home with suitable support for all of the family and the nice thing is that she cares for me too! It is lovely to say that my Carer looks after me, the unpaid carer, in lots of ways but one particular is that she makes sure I have a proper meal everyday! Yummy.

I now get some respite and have joined the local walking group. I have enjoyed many happy hours walking around the area, with some lovely people, chatting all the way and making some new friends.

Today, for example, was a treat I was out for three hours!! We walked to a little tearoom. Had a lovely brunch and then walked home. The sun was shining and it was lovely. The day before I had felt quite frazzled, but that trip out made all the difference to me.

How I found respite – navigating the system

When I set up things with my Carer, I had to work with social services to get them ‘on board’. Six months down the line it is still not completely sorted, but we are 80 per cent there. Once I found the right Carer, I contacted the Finance Department at the council to check that this person would be suitable. They are very helpful and gave me a list of requirements. Once sorted I contacted the social workers.

I had to deal with two departments the Older Peoples Team and the Adult Learning Disability Team. I will tell you how I worked with the Older Peoples Team (they are both very similar).

I rang the number and asked for a review for my Mum. They said I needed an assessment as they hadn’t got her being supported yet. They got my details (it was good that I had a Lasting Power of Attorney in place) and said a social worker would be delegated and then contact me.

I wasn’t expecting a speedy response, as we all know how it works! However, I also knew how to push it along. So, a week later I emailed the team and asked about progress. They rang me and said I did not actually need an “assessment” as it was already done and a “review” would suffice. Someone would ring me shortly. I emailed again each week for the next two weeks.

My next step would have been an email to the manager of the department but no need (at that point you can make a formal complaint but usually you get a social worker PDQ). I got a phone call from a social worker who said she had the assessment and would just do a review. She asked what was I looking for in terms of support? “Three hours a day, five days a week please” I said. (Tip: knowing what you want will really help to speed things along). “That sounds reasonable, I will get it sorted”.