Category Archives: Dementia

Things to do before you die

Dying Matters

This week is Dying Matters Awareness Week, starting on the 12th May until the 18th, it aims to get people talking about death and encourages us to make provision for one of the certainties in life, its end.

As with many of these campaign weeks, the national media have been running stories to coincide with the events and I was personally surprised to read the following story on the bbc website showing that so few of us have made arrangements concerning our end of life. The details are there for anyone to read, but if I simply restate here that only 21% of respondents to a survey state that they’ve discussed their end of life arrangements, I think the problem becomes clear given that 100% will die.

Here in Guernsey there’s a wonderful campaign underway this week with the pop up shop in Smith Street taken over for the campaign and the arts commission have installed a Before I Die…. wall in the market. All geared to get people talking about, and making, end of life arrangements.

I’ve never quite felt comfortable about the term “end of life” as I always thought it was a nice way of saying “death”, but I’ve now come to realise that it’s about a lot more than the final act of death. Dying, for many people, is a process that takes time and what the campaign is asking of us is not simply to arrange our funeral and write a will, important though they might be, but to also discuss our long term care should we become incapable of making those decisions ourselves.

In the UK people may choose to write what is colloquially known as a living will, or if you’ve been watching a little too much American drama, an advance directive. This is particularly timely, as the States will be discussing a requête by Deputy Perrot (turn to page 193) when we’re finished debating the transport strategy. The requête seeks the introduction of an Enduring Power of Attorney, the ability to decide in advance of losing capacity what arrangements you’d like to put in place for that day, should it happen. This is only a small part of what is required in terms of capacity legislation, but will assist many people in determining their health care requirements in advance of losing the capacity to do so. The obvious beneficiaries will be those who go on to develop dementia, or those that suffer enduring mental health conditions that cause them to lose capacity for short periods of time.

I’m very supportive of the requête and will vote accordingly, my hope being that people will complete an Enduring Power of Attorney at the same time that they write a will, or to have the opportunity of writing one when they’ve first been diagnosed with some form of dementia. It’s important that we afford people the choice of deciding their future care needs.

An Enduring Power of Attorney would also assist HSSD in their care of people. I’m sure it will come as no surprise, now you know there’s no advanced directive available in law here, that certain care decisions become difficult for the professional carers. Doctors, nurses and social workers can find themselves in the eye of a family feud with no basis in law to fulfil what is the patient’s wishes. This is a situation we surely can’t allow to continue.
I sincerely hope the requête will be successful  and the law introduced swiftly.

On a personal note, I’m surprised people don’t talk about dying. It may be me or it may be a Welsh thing, but death is not a difficult discussion around the dinner table with the family. Well maybe not the dinner table, but I was back in Wales a couple of weeks ago and I had an evening meal with my sister and her family. After dinner the discussion moved at one point to our choices of hymns for our funerals and where we’d like to be buried. It wasn’t a depressing conversation, it was rather affirming to have such a discussion and understand why we’d both chosen our respective burial plots. It was interesting how we’d both moved from being in favour of cremation to burial. We had a good laugh about our choice of hymn and her incredulity as to how catholic I was compared to her protestant position. It was a fun evening with plenty of laughter and shows that difficult conversations can be had whilst enjoying yourself.

Having written all the above, I suppose I should also confess to being someone who hasn’t yet written a will, something that’s particularly important given that I’m in a long term relationship and haven’t married. I haven’t made proper arrangements to be an organ donor. I therefore pledge to deal with these issues this week. Hopefully a number of people will do the same, after all, if not this week, when?

The one thing we can all be sure of is dying. All of us probably know of a family that have torn themselves apart over a lack of a will. All of us probably know someone who’s had, or is currently suffering dementia, do we know if they’re receiving the care they would have wished? If you’ve attended as many funerals as I have you’ll also have seen exactly what you don’t want for your funeral and maybe some things that you do want.

Can I suggest that you give yourself a gift of ensuring you have a voice in your long term care and funeral arrangements. I’m arranging mine this week.