The Carers' Cribsheet
To round off Carers' Week here in the UK, important words on the practicalities of offering care
Happy Sunday, friends.
I’m revisiting a post I first shared over a year ago as Carers’ Week here in the UK is coming to an end.
A lovely subscriber commented earlier in the week, asking why this post hadn’t been as commented-upon as others, and I explained that it was one of my very first paid posts. Looking back, though, I don’t think it at all merits being behind the paywall. It’s a fully practical call-to-action that everyone with a caring responsibility (or who anticipates a caring responsibility in their future) should read, save and share.
When I first wrote it, I’d been prompted by having become just as muddled by the UK benefits system as my chronically-ill mother. It also sprung from the many conversations I’d had (continue to have) with friends as we discuss the inevitable decline our parents are either facing now or are sure to in the not-so-far away future. Of course, sometimes there isn’t a decline. Just a hideous phone call followed by a full kitchen fridge to empty; fresh bottles of milk clinking in the door. I cover that, too.
For context, I have a caring responsibility for my mum who lives with Bipolar Disorder and a range of (related and unrelated) chronic physical health issues. She lives, too, with a partner who has Type 2 Diabetes, depression and other health issues. I was also co-responsible for settling my dad’s affairs following his sudden death in June 2022. Over the past four and a half years, I’ve stood on the sidelines while my husband has managed his own father’s affairs following his sudden death, too. Maybe there’s a whole other post here…
We all know it’s easier to bury our head in the sand than to face up to the challenges that lie in wait as our loved ones age. I know this, and feel it most strongly looking at my mother and father-in-law these days. They are both fit, well and enjoying an active retirement but it can’t last forever. And though it’s not the conversation we might imagine having over Sunday lunch today, I know it’s one we really should be having.
They’ve moved closer to us recently, the unspoken nub of that decision being that we are more likely to be able to support them if they’re close by. Incidentally, this move has popped them in the same postcode area as my mum. I picture many a slingshot visit to Ayrshire in my future, pit-stopping at intervals along a short stretch of coastline to maximise the efficiency of my visitations…
Living in Scotland, we are (to an extent) buffered by the NHS and the various health and social care services available, though I know this is postcode-dependent. However, there is a veil of secrecy shrouding the reality of unpaid caring. We are a small nation of just under 5.4 million people, so the following stat from the Scottish Government is particularly worrisome.
In 2020, it was estimated that there were around 839,000 adult carers living in Scotland.
Older, working age females are more likely to provide unpaid care than other groups. People in the most deprived areas are more likely to provide 50 or more hours of unpaid care a week compared to people living in the least deprived areas.
Despite government help, there is no getting away from it: midlife women especially are likely to have unpaid caring responsibilities added into the already-complicated life mix sooner or later.
So, consider this as a PSA, if you will. Less musing and more doing. Maybe it will encourage you to consider some steps you can take or conversations you can have with your loved ones now that will make the future easier to manage.
What follows is the essential intel. The ‘What Now?’ of managing the difficult stuff in the face of others’ illness, decline, accident or death. I’ll try not to be too triggering…
While everyone’s ticking along nicely, ask about the following…
Wills
Have they written a Will? Have they appointed a solicitor and does the solicitor hold a copy of the Will? If they have yet to do this, then make it a priority. Even if they don’t have assets of much value, the lack of a Will becomes VERY INCONVENIENT for every other process involved in settling an estate.
Of course, they may also have wishes pertaining to their funeral or what should happen to their body when they die. We were caught out with this one when Dad died, as the wheels were so swiftly set in motion with the undertaker that our discussions about donating his body to medical science (really!) were forgotten. Once the undertakers arrive and take the body away then that’s pretty much decision made. They’re in the system.
If you’re interested in reading about the other options available, then I recommend the memoir Smoke Gets in Your Eyes by Caitlin Doughty whose experience as a crematorium operative led her down an interesting path of discovery about the human, ecological and spiritual costs of our modern funeral business.
Make sure, too, you know who the Executors of the Will are. It might be one person, or a solicitor. They will ensure that the wishes of your loved one are carried out. If no one is appointed to this job, things get complicated. There is more info here if you are based in Scotland.
Life Insurance / Assurance
Find out if they have any policies that will pay out in the event of their death and where they store all the important paperwork. Know the terms of the policy. Have they alerted their insurer to any pre-existing / new health conditions? There are immediate costs that need to be covered such as funeral expenses, settling bills and so on (particularly if there is no surviving spouse), and in our case we had to pay these upfront before (many months later) the policy paid out. It was a substantial hit in the short term for me and my brother: the very small funeral and cremation alone cost in excess of £5000.
Power of Attorney
Encourage your loved one to appoint / contact their solicitor to get this ball rolling. Who would they nominate to make decisions – personal, financial and so on – when they are unable to? This is a really straightforward, inexpensive process. It means that if someone, for example, was to have a stroke and couldn’t advocate for themselves then the PoA can speak on their behalf.
Other financial matters
They might not want to be candid about their other financial affairs, but ask them to make sure that all their account details, documents, passwords and so on (for mortgage, utilities, direct debits and so on) are stored in a place you will be able to access. My husband’s dad handily stored everything in a safe… Except it took a lot of creative thinking to unearth the code. Months were lost to that one.
After a person dies, the process for alerting some of the relevant authorities is made smoother through the Tell Us Once scheme in the UK, which cancels their driving license, passport, state pension and so on.
Encourage a death clear-out
This one, admittedly, might cause consternation. But if you have the stomach for it, encourage them to sort out their stuff. Be ruthless. You do not want an attic, a garage, a shed, a basement and a house to clear. Is there a way to support them to Marie Kondo their lives without reminding them that their death is on your mind? My dad claimed to have done his death clear-out, but it appeared during Covid times he replenished… The local charity shops and food banks did very well indeed out of his belief about his own immortality. Shaving creams, soaps, shower gels and instant coffee pouches FOR LIFE, he’d tell me when another bulk order arrived. He wasn’t wrong.
When the shit hits the fan…
A stroke has happened. A heart attack. An accident.
INVESTIGATE POINTS 1-4 ABOVE AS MATTERS OF URGENCY.
The slow decline…
Both of my parents’ experience of ill health began well before they hit pensionable age, and so applying for and being deemed to qualify for benefits was and still is a recurrent stressor. The situation is slightly easier if they are in receipt of their State Pension.
Make sure that you understand what benefits they are entitled to, which will very much depend on their assets and capital wealth. It might be that they are entitled to Tax Credits if still able to work or a combination of Universal Credit, Disability Living Allowance, Carers’ Allowance, Personal Independence Payment or others. And perhaps they are able to draw down on a pension or cash in a policy early if need be. Seek advice from a local service, such as Money Matters which operates in Local Authorities across the UK.
Ensure that you or someone else is named as a Benefit Appointee if your loved one is not able to fully manage their benefits alone. Universal Credit, for example, is mostly managed through an online portal that it really helps to be able to cast an eye over (I can tell you, it’s not an easy place to navigate). You can access help and advice on this by contacting your local Job Centre.
This is absolutely not an exhaustive list, so if you have anything you’d add then please do in the comments… Let’s lift the veil.
This is so helpful but sometimes such conversations are really really difficult and maybe needed with our partners and those who do not imminently contemplate this. My mum will be 90 fairly soon, just met her at Glasgow Central after her 600 mile trip. Back in England she and her other very old friends resolutely refuse to move to their children. They support cherish and love each other. So so proud of them. A tangent sorry!!
Thanks for sharing these signposts to smoothening the way. With caring responsibilities for an indefinitely vulnerable child (technically adult, but meh, that's a misleading word within the context) I tend to ostrich on all matters of care beyond. I need more strategies - for my own parents, for me myself too ultimately - so these are useful links indeed. Thanks Lindsay.