Beth Britton, award-winning campaigner, speaker and expert in ageing, health and social care talks about her own experience of future care planning and reviews the soon-to-be-released My Future Care Handbook…
Much like most people who are reading this blog, I don’t like thinking or talking about a time when I or someone I love might be very unwell, lack mental capacity or be approaching the end of life. Yet as my dad always said: “There are only two certainties in life; death and taxes.”
As you might have guessed, my dad was a bit of a pragmatist, which was helpful in terms of dad openly telling us details like where he wanted to be buried long before that time arose. But my dad’s pragmatism didn’t extend to writing down details of his future care wishes, probably because he didn’t expect to spend the last 19 years of his life with vascular dementia.
Dad’s dementia, of course, meant that he eventually lost mental capacity, and like many families, because we neither foresaw this nor had any advice that it would happen, we never instigated any future planning with dad. The result was that dad had no Power of Attorney, no written plans for the type of care he wanted (or didn’t want), and ended up spending the last nine years of his life in three different care homes before he died in April 2012.
Given that my dad was a very private person I don’t think that he would have chosen to become a care home resident, but sadly without documentation those decisions were taken out of our hands by doctors and social workers, and we were left to make the best of the situation. Once dad was in his first care home the trail of paperwork began, and over those nine years countless care plans – including end of life plans – were made, mostly with our input, but often what we contributed amounted to guesswork as we tried to imagine what dad might want. Yes, we knew dad better than anyone, but there is still no substitute for the person’s own voice.
To put this into perspective, the only document from the My Future Care Handbook that we ever had for my dad was a Do Not Attempt Cardiopulmonary Resuscitation (DNR as it was abbreviated to back then), and that was only because the GP at his care home came to speak at one of our Relatives’ meetings and discussed dad’s increasing frailty with us afterwards, recommending that we agree to a DNR which the GP then signed.
In the end did it matter that we didn’t have more documents? As dad’s life ebbed away and in the aftermath of his death http://d4dementia.blogspot.com/2012/06/end-of-life-care-very-personal-story.html in many ways it didn’t, but there is no doubt that having documentation of someone’s personal wishes takes the guesswork out of answering all of the questions you’re asked at what is an absolutely awful time.
These issues feel like they’ve come to greater prominence in the nearly 8 years since my dad died, and I know that the My Future Care Handbook is the culmination of a huge amount of research and work that Zoe, her Mycarematters team and the many professionals who’ve supported it have put into creating what is a fantastically comprehensive resource.
The Handbook is literally a one-stop-shop for anything and everything future care related, and in my feedback I struggled to find much more to recommend for inclusion. What makes this resource particularly useful is how accessible it is. It takes what is a really tough topic and makes it as easy to address as it’s ever going to be.
Of course all the important legal elements are within the Handbook, as well as the guidance multidisciplinary health and care professionals would need to support someone effectively, but it was the less obvious details that I really liked. The ‘Bucket List’ and the ‘Create A Play List’ suggestions were two of my favourites – these are more ‘fun’ activities that make the heavier legal elements easier to approach. And, as you’d expect, the connection with the Mycarematters profile is there, meaning these documents seamlessly link up.
Could I have sat down with my dad and gone through the Handbook without either of us feeling awkward? Yes, I think we could have, and I will probably show the finished product to my mum when it’s available. As for me, having made a Will a few years ago – prompted by my mum updating hers – I guess I’ve begun to think about the future. Our next future care ‘project’ together, for want of a better way of putting it, is for my mum to complete a Power of Attorney. It’s been on our radar for ages, and reading the My Future Care Handbook was another reminder that it will have to be addressed, however hard it is.
To order one or more copies of the My Future Handbook click here.
About the author:
Beth Britton is an award-winning content creator, consultant, trainer, mentor, campaigner and speaker who is an expert in ageing, health and social care https://www.bethbritton.com.
Photo credit: National Care Forum Managers Conference 2019