Who will keep caring, when I'm unable?

As unpaid carers, what happens to the person we care for, if we’re no longer able to care for them? A tricky conversation that we have been asking in our Facebook group and in one of our Big Conversation virtual cuppas.

We’ve captured the advice shared by unpaid carers in the Mobilise community. And we’ve pulled together resources to help us navigate this difficult, emotional and sometimes scary topic.

“This sits at the back of my head. We need to be quite brave to bring it to the front and be fine to deal with it”
Illustration of a woman and her thoughts.

Things we worry about

“How will they cope if I’m no longer here?”

“Who will look after their bank account?”

“Who will advocate for them and chase up services?”

“Asking someone to take over my care duties feels like a big burden, but I hate using that word”

“It feels like a big black hole that no-one tells you about”

And for those of us who haven’t made a start yet. We’re not on our own. A study by the Carers’ Trust showed that 90% of us have no plans in place (page 18 of the report).

How do we get started?

“What helped me was to just start and do something. Even if I didn’t think it was done as well as it could be. But just getting off the starting block. Stop looking at the whole overwhelming thing and do one thing…”

Six things we can do to get started

1. Create an emergency plan

Sometimes called a ‘what if plan’, this is a plan that captures all the essential and immediate information that others would need, should we suddenly be unable to continue caring. And fear not, we don’t have to start from scratch.

Suzanne, our Head of Carer support and carer to her husband Matt with Parkinson’s, has shared her template. A great starting point for those of us feeling understandably overwhelmed.

We can choose a time in our own diary to get started with our own emergency plan.

Chloe shared how she got started with her own emergency plan (which she called a What If plan).

“The idea of a ‘What If plan’ seemed terrifying and I found it daunting to think about what would happen if I couldn’t be there to care for my brother. So my ‘What If’ evolved into a scenario where I was planning a week away. I could then focus on the ‘What Now?’. This allowed me to look at my caring situation from the outside and identify all of the things that needed to be done, who could undertake these responsibilities and what was most important to my brother.”
Illustration of a man holding a folder.

2. Create an emergency folder

This could be a real folder and / or an online version, containing all the important information and documents, such as:

If we’re comfortable using an online storage, then some carers recommended creating a Google Drive to act as the emergency folder. We can store all our documents in there and give the password to people who would need access.

We can download Google Drive (via the Playstore for androids users, and App store for iPhone users). This will give us access to Google Docs (like a word document) and Google Spreadsheets (like Excel). And allows us to update key information at our fingertips.

Everything will be automatically saved so we do not have to worry about which was the most updated version. Here’s a short video introduction to Google drive.

3. Put wills and trusts in place

This can feel overwhelming, especially if we have no-one we can ask to take over our caring role from us. Our guide to Wills and Trusts may be a good starting point for us.

If we’re putting a trust in place for a vulnerable person, it can be a more complex process. It’s recommended that you contact a solicitor who has experience in discretionary trusts.

For those of us who care for someone with a learning disability, Mencap runs free ‘Planning for the Future’ seminars.

Illustration of a man and woman on the phone.

4. Share Lasting Power of Attorney

Carers in our community recommended having at least two people on the Lasting Powers of Attorney (both property/finance and welfare/health). This means that even in our absence, those decisions can still be made in the person we care for's best interests.

Our carers’ guide to Lasting Powers of Attorney can get us started.

5. Create a one-page profile

This is one page of A4, which includes all the ‘soft stuff’ about the person we care for. The things that make them smile, as well as the things that trigger a meltdown. All the subtle nuances of what great care looks like for the person we care for. It’s simple to get started with our own one page profile with our quick guide.

6. Take care of ourselves

Talking and thinking about when we’re no longer able to care, can bring some strong feelings and emotions. We’re addressing our own mortality but also the impact on the person we care for. It’s totally understandable if we feel overwhelmed, sad, scared or any other emotion we’re feeling.

It can help to talk, and our carer support team is available seven days a week. For those of us who would benefit from a non-judgemental, listening ear. Talking things through can be a helpful way to start making sense of things and to start moving forwards.

What if I have no one to take over my caring role?

This is an incredibly stressful situation for many carers, as evidenced by the Sense ‘When I’m gone’ work.

Their study shows that 75% of us have no plan for the day that care is no longer available from us.

Sense also prepared a really helpful guide called ‘Decisions to make, steps to take’ for those of us caring for an adult with a disability. Including information on where the person we care for might live, how things can be funded and advocacy support under the Care Act 2014.

You might also like:

Carers' guide to Wills and Trusts

Carers' guide to Lasting Power of Attorney

Support for when the person we care for dies

How to cope when our caring role comes to an end