Jane shares her experience of navigating the system to get respite. She has cared for four members of her family.
Since writing this, sadly her mother has passed away “at home where she wanted to be, having a hug from Jane when she went”.
She talks about the value of respite and encourages other carers to seek support before things reach crisis point.
Jane uses Carer with a capital C to denote the paid carer.
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”.
It took two months to get the finance sorted. This included an assessment of mum’s own finances but it was fairly straightforward and I know the team would have helped complete the form, if I had needed them to.
Every year they should come back to you to do a review but sometimes you have to chase it. If your circumstances change, you can also contact them to change the care package. I can’t really complain about the services, it is just a shame you have to keep chasing them. Emailing makes it a lot simpler to do this and you have a record of each time you write.
Knowing what you want in the form of care is important and planning is the key. I do recommend that you bring Carers in as soon as possible – even if you think “oh I can manage for a bit – I do not want strangers in my house”. It is much better to have them coming in once a week to cook a meal or take you out shopping so that you build a relationship with them.
Then when the time comes for needing more care, you are familiar with the people that are visiting your home.
Carers come in lots of different types. My husband used to have a personal assistant who took him to watch football each week. Another personal assistant took him out for a coffee and cake once a week. He was also supported to do craft activities. Towards the end of his life, the care package changed and he required personal care and help with medication.
What does respite mean to me?
Respite is really important for the unpaid carer. Unfortunately, people leave it till they are desperate for a break before trying to organise something. When you start looking after someone, think about how you are going to manage. Even if you think you do not need support from a Carer, it would be a good idea just to have them in for a little while. They can then build up a relationship with you and the person being cared for.
I’m happy about leaving my family in the capable hands of my Carer now. but it took me a while to have the confidence to do this.
What is respite? It is different for everyone. Some people think it means sending a loved one into a care or nursing home. That to me is the last resort.
To me respite means time to myself. Maybe just an hour. It could mean the chance to catch up with some jobs whilst someone else looks after the family. We take the Carer to the café in the supermarket, she takes Mum to a suitable table and I can get the drinks. It means I can enjoy being with my Mum as a daughter and not as an unpaid carer. Respite is different for everyone, what is respite to you?
So first decide what respite means to you. Plan for the respite when you make your initial plans for caring for your loved one at the start. Realize that you will need these breaks. If you’re like me, you want to care for that person for the rest of their lives and you can’t do that if you make yourself ill.
What I have found is that if you get the right care package that works for you, then respite comes along naturally.
You might like to put together a scrap book containing information about the person to be cared for. For instance, pictures of their family, a list of things they like, what they used to do as a job. Things that go to make the person who they are. This will enable the Carer to learn about the person they are caring for and it will help them give a more ‘person centered approach’ to the care.
I have been asked what message might I have for the care providers. Yes, can we have a more ‘person centered approach’ please. How about having grades for your Carers so that you can recognise the more qualified staff with a pay rise. Giving them better job satisfaction and then they might stay working in this field. Work with social services to agree a better time frame to give a proper service to those you are caring for. Finally, keep regular Carers for those they care for so that they can build a good relationship with the person and they can become friends as well as clients.