We had another afternoon’s filming last week. This time it
was all about the Carer, which I found refreshing. The NHS has commissioned a
number of short films about Carers for the NHS Choices website - in advance of the new
Care Act, which is due to become law in April. A few weeks ago I was asked by the MND
Association if I would help NHS Choices by agreeing to be interviewed for one
of these films. I said yes. Each film deals with a different aspect of caring
but what they wanted to speak to me and Roch about was Forward Planning after
diagnosis with a terminal illness. I had a long chat on the phone with
Producer/Director Shiroma and agreed a date for filming. Knowing they would
want to ask Roch some questions too, Amelia and I were concerned, as last time
he seemed to struggle for breath during filming. This time he did his part with
the ventilator on, which helped, but he tires easily so we were careful about
It took them about 45 minutes to set up – I find it very
interesting to see how they discuss lighting and angle – and move things about.
I am always fascinated by the amount of equipment they need. This time we
didn’t have a crowd – just Shiroma and cameraman Tom. We ended up seated at the kitchen table, (they
always like the kitchen for interviews, the lighting is good and the colour
scheme is cheery) and the interview began. I launched into what I thought was a great
first answer – only to be told that we had to do it all again, at which point I
stumbled uselessly through, completely forgetting what I had said before! But
despite aeroplane noise and a cheeky interruption by Oscar the cat, meowing
loudly to get my attention at one point, we got through it all. I did most of
the talking this time, which saved Roch’s voice. Afterwards, my relief at
having got through it was tempered by the realisation that filming was not over
as they wanted some shots of us during a typical day at home. So we watched a
bit of Judge Judy (!), read together side by side and looked through our
Wedding album with Kate (of course we do that every day, as you know…) Then we
went outside to the garden together, which we often do. I did ask if they
wanted me to bring in the washing, but was told it looked ‘more natural’ to
have it there. So we left it, tee shirts
blowing in the breeze.
Shiroma took us through our feelings on Roch’s diagnosis,
that devastating news which shattered our planned future together, our fears
for our children at that time and how and why we tried to plan ahead. It felt
odd, thinking about how we were then, shocked and scared, and how we didn’t
think Roch would still be around in 2015. We talked about the kinds of
conversations we had and who helped us then (the Hospice Nurse, the MND
Association), about the house and mortgage and financial planning, me
continuing to work and how important that felt to me (and still does), making
our ‘to-do’ lists – Wills, Insurance, bank accounts, title deeds. Sure, we had
our ‘bucket list’ but we had to be sensible. We couldn’t afford to spend money
travelling – we didn’t know how many years we had left together and we tried to
be sensible – in case we he did live longer and we ended up spending too much
too soon. Just as well we were sensible.
Sometimes all we could do on a day was
agree to add something else to the list, but we both felt a sense of urgency,
given the timescale. As the years passed, that sense of urgency lifted and I
guess to a certain extent we let things drift.
We did do nice things, of course we did. Roch wanted to go
back to places we’d been before – New York, Venice. We treated ourselves to a week in the sun in
February 2010, a thing we’d never done before.
So we talked to Shiroma about how important it is to feel
some control and how it helps to make plans – for me as the Carer, who faces
being the one left behind (but who knows what will happen?) and for Roch as the
person given the terminal diagnosis, to know that he has made provision for his
family and looked after all his affairs in advance.
Shiroma was interested to hear that I keep another list in
my phone. Every now and then Roch will mention a song that he likes or a poem
he feels he would like at his funeral service. Yes, I know it sounds morbid but
why not get it right? In fact I began the list a long time ago, when he told me
he didn’t like daffodils. He tells me they smell of piss. That was the first
item on the list. No daffodils in his room or at the funeral.
I recalled a time when Roch could still drive, and he was
giving me a lift into work one morning. There I was, busy thinking about work,
mentally preparing for my shift and suddenly Roch starts talking about the
cemetery where he wants to be buried. Boy, was I not ready for that
conversation. It’s important to pick the right time for both of you. We talked
about it later – and it went onto the list.
Shiroma asked me questions, too, about what it is like to be
the Main Carer – and we talked about how important it is to ask for help and
how difficult that was for me at first. Guilt is part of the Carer’s portion I
think. I used to feel I was letting him down if I didn’t do it myself – that I
wasn’t coping if I had to ask for help but now I know the opposite is true. Part
of looking after him is looking after myself. Certainly these days I couldn’t
cope without help.
It was strange to find ourselves leafing through our Wedding
album after our interview. Shiroma suggested that we look at photographs while
they filmed us and as most of our family photos are loose and in boxes, I just
thought an album would be easier to manage.
I looked carefully at the young couple we were then, full of hope and
happiness, no idea of what lay ahead. Yes, I felt sad, but not overwhelmed with
sadness. It’s a beautiful album. I think
we should take a look more often and remind ourselves of how far we’ve both come
since that day and what a great marriage we have. I’m not saying our life together has been
perfect, but it’s been good and it’s not over yet.