I met with my solicitor recently to update my Will. It all seemed fairly straight forward until I started thinking about my 24 year old son Harry. Harry has severe epilepsy and learning disabilities and has been supported by Dimensions for the last six years.
This got me thinking about two aspects of death. First, what will happen when I am no longer around?
Whilst, at the age of 57, I am not planning on departing this mortal coil just yet, now is definitely the time to plan.
Who will visit Harry? Look after him? Take him out? How will they know what he likes? Who will tell him (and how?) that I am gone? Will he grow old with no family to visit him?
As well as seeing me most weeks, Harry also sees his Mum and his 27 year old brother Jack regularly.
Harry’s mum and I divorced some years ago and at some point Jack will be his next of kin. However it would be wrong to just assume that Jack will step in where his Mum and I left off, as he will have his own life to live, perhaps with a family of his own.
That feels like a conversation we need to have. However great a support organisation might be, it is only as good as the staff who support Harry day-to-day. What happens when they, inevitably, move on? A lot of horrid questions. At least the financial aspect can be sorted, with care.
Knowing I didn’t want to pass money or property to Harry directly, the solicitor recommended a discretionary trust. This involved naming Harry as a potential beneficiary, without passing actual money or assets directly to him directly.
The Trustees can make money available to him and to others in his best interests as necessary, and their role can be wider than just money management, and include things like trips, days out and so on. The ease and flexibility of this arrangement appealed to me.
But what happens when our loved one passes away first? Statistically, adults with learning difficulties do not live as long as the general population and so there is a chance that we will outlive our relatives or friends in care.
Perhaps the best approach is to talk to the support provider in advance and make it clear what we would like to happen when our loved one does pass away.
In fact, I will probably write everything down in a “letter of wishes” which details everything I know about how Harry would like to be treated.
As family or friends we will probably have a better understanding of what they may appreciate at their funeral, after all they will be there even if only in spirit. This can certainly remove a great deal of anguish when the inevitable happens.
I will certainly be giving this matter some thought and will talk to Harry’s carers at Dimensions about what arrangements we as his family would like as and when he does pass away.
Whilst there is never a good time to think about death, I do think that giving it some thought ahead of the grieving process has to be the right approach.
I am also sure staff at Dimensions will welcome us initiating the conversation, as it is often a difficult topic for them to raise with us. But as with everything in life – where there’s a will, there’s a way.
These are my own views and you should talk to a solicitor or the Court of Protection if you are thinking of drafting a will, setting up a trust or becoming an appointed deputy.