Death and dying are a part of any life. But as carers, we probably are more acutely aware of its proximity and impact.
The advancement toward the death of the person we care for can trigger a wave of emotion and something called anticipatory grief.
And then there is the in-between bit. Where we know that death is on the cards, but we simply skirt around the issue as it’s too painful or uncomfortable to look at. The conversations can feel awkward - such as discussing Wills, Powers of Attorney, end-of-life care or funeral arrangements.
And it’s these uncomfortable parts that Dying matters awareness week is helping us to face head on.
Research by Dying Matters found that the reason people don’t have end-of-life plans in place is because we’re both unaware of what to do and unsure how to talk about it.
With this in mind, we’ve created the below guide to getting our (dying) ducks in a row!
Five tricky death conversations we could be having with the person we care for
1. Where do they want to die?
Dying Matters report states that only 13% of adults have let a close friend or family member know where they want to be when they die. Whilst only three in ten know how to go about making arrangements to ensure they die in the place they have chosen.
If the person we care for has capacity, and if their condition is life-limiting or threatening, this is a valuable chat to have.
Carers also found The Death Book (£12.50) helpful - a notebook that allows us (or the person we care for) to organise their final wishes in a simplified way.
"It's a fabulous book, I found it via somebody I follow on Instagram. Whilst not a legal document, at least you can write down your own requests and hope that family and friends follow them"
Dying Matters also have guides to help us approach these tricky conversations:
We all have the right to express where we would like to die, and further advice on how, can be found here.
2. The legal stuff
Gosh this stuff can leave us feeling cold and mercenary, but it’s so important!
If our cared-for is likely to lose their mental capacity (ability to make decisions with a sound mind), then sorting out the legal and financial stuff may be a race against time. Mike was in this very position, as he cared for his partner Tom with vascular dementia.
Mike’s story highlights some of the key legal matters to get in place, at a time when your mind can be understandably distracted.
Our Carer's Guide to Wills and Trusts is a great starting point.
Now may be the perfect time to put Lasting Powers of Attorney (or Powers of Attorney in Scotland) in place.
3. Funeral arrangements
There’s the emotional stuff - faith, spirituality and how our cared-for would like to be remembered. And then there’s the money side and how the funeral is funded.
In some ways, if we’re able to bring this chat into our lives while death is only a speck on the horizon, it may be easier to chat in a more relaxed way and possibly with some light humour about our ‘big send off’.
Of course, when death is more imminent, this is an incredibly emotional and yet very important conversation.
4. Digital legacy
What happens to the person we care for's (and our) social media accounts and other online registrations once we or the person we care for have passed?
For example, if the person we care for has a Facebook account, they can appoint us as their legacy contact, allowing us to manage the account after their death.
It’s worth exploring the person we care for's digital footprint, and seeing what contingencies can be put in place.
Password managers are a great piece of kit, all your passwords are stored in one place and you just have to remember one master password to access them. Our Digital skills for carers has more info.
5. What if we go first?
This is the chat where we discuss what happens to our cared-for if we die first. What are their preferences for continued care - if they’re able to share. What are our preferences? And do we have a will and/ or trust in place that can honour those wishes?
Nearing the end
Emotional support for ourselves as the carer and for the person we care for can make a huge difference to how we navigate this very difficult road.
Carers in our community have recommended support from services and charities such as Marie Curie and Soul Midwives, who:
“Support individuals and families at the end of life and are a lovely, compassionate, kind and holistic group of people” - Unpaid Carer, in the Mobilise Community
After the end
When the person we care for has sadly passed away, it is understandable that we may feel a huge void in our lives and a wave of many emotions. Knowing where to look for support can be draining. Being a carer can be all-consuming, so the loss of that role, even if the relationship was difficult, will be huge.
Our carer support team is here for you seven days a week for a listening ear. And for support specific to loss, Untangle has some brilliant advice and support.
What next?
So what has this blog inspired you to do? If starting the conversation is proving challenging, remember the helpful guides from Dying Matters.
And if you would like to connect with others in similar positions who "get it", feel free to join our online Mobilise Community. It's a space where carers are welcome to ask all sorts of questions to do with caring, and we help each other out with our experiences and wisdom.
Finally, be kind to yourself, these are big topics to cover. They’ll take a toll on us emotionally, but if bravely faced, will reduce emotional turmoil at the most difficult of times.