The hospice enables us to live as a family
Josh Forbes, 13, has such severe, uncontrolled epilepsy that his brain is permanently damaged. His mum Liz Durham, 48, here describes the tough but ultimately heartlifting decision to consider hospice care
The thought of
Josh going into a hospice terrified me. Hospices, I thought, were
there for the end of someone's life. How wrong I was! Since
Josh started at Richard House in 2008, my experiences have proved
the opposite: a hospice can be where you celebrate life, a place
full of warmth and laughter where everyone feels happy, safe and
loved.
Josh was a 'normal' baby. He did have meningitis at six-and-a-half months, but he made a full recovery. Then, when Josh was four, he suddenly started falling over when we were out - he'd stop walking and fall to the floor, but he was conscious and would laugh about it. I thought it was just a phase, that he was just tired and didn't really want to walk.
Then, one day on the way to school, Josh said he felt poorly. I dropped him off at a friend's house while I took the other children to school. When I went back a few minutes later, he was lying on the sofa with his eyes open, but unseeing - he was unconscious. We rushed him to hospital and, after tests and more seizures, Josh was diagnosed with epilepsy.
We've tried everything over the years to control Josh's
condition - medication, devices to control the electrical impulses
in his brain, special diets - all in vain. And the seizures are so
frequent and so violent that he has lost the ability to walk, write
and look after himself.
But Josh is a star - he thinks everyone is just like he is. He
wants everyone to be his friend, and at Richard House, everyone is
his friend - and mine, too.
When doctors suggested hospice care, I decided to look around
Richard House to see what I thought - and fell in love instantly!
In the dining room, the children and families were eating lunch
with all the staff - the directors, the fundraisers, the nursing
staff, everyone. I knew that Josh had to come here - I'd never
been in such a positive, inspiring and uplifting place.
We can be a family here. However ill Josh is - even when he's
in a coma - the staff just carry on as normal and do fun
activities. And there's a room for me here. I can stay with my
boy when he's ill, but I get respite, too. I get concerned arms
around me when things are tough. I get to have a shower, have a
coffee, have a break from being up several times a night checking
on Josh or giving him his medication, knowing all the staff are
doing everything they can to make Josh happy.
Sadly Josh passed away shortly after this article was written.
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