experience
something was very wrong. And now, all these years
later, whenever I have been let down by systems that
are supposed to support my disabled son. These are the
moments I have missed my mother the most. A sharp
reminder that the most reliable relationship, the most
significant of my life, has gone.
Something changed over those years. The world
around me began to talk about mental illness. An
understanding started to grow that suicide is a
symptom of an illness, rather than a failure to survive.
As I started to shed some of my worries about
protecting my mother’s memory, I found people were
more capable of empathy and less judgemental than
they had once been. I also discovered that I didn’t care
if someone judged her. I knew the truth. My mother
hanged herself when I was 22. She
had also been a wonderful mother,
who became extremely ill.
I also found I had the energy to
comfort those that found it upsetting.
And that more often than not, a
person had their own story of someone
they had known and loved that had died
by suicide and they were desperate for
the chance to speak about them. My
ease with the topic was a relief to
others. It was something to which
I could contribute.
Now I have two children, a daughter and
a son. Caring for my son, who is autistic
and has learning difficulties, brought back
memories of the care I had provided for my
mother. After she died, I’d put those years
aside. It was a relief to do so. In death, I no
longer had to dwell on the danger she was in,
or her behaviour towards me, I could just miss her. I
could forget all the times I checked to see if she was
breathing, encouraged her to get out of bed, or to eat.
The times she used me as a shoulder to cry on and
told me sorrows that were way beyond my years.
But as it became clear that the demands on me as
a mother to a disabled child were going to be very
high, I began to go over those years again. I knew
how much pressure I would be under as a carer.
When you are a carer, you hold someone else’s life
in your hands. My son is unlikely to outgrow his
need for care. Unlike with my mother, our situation is
permanent and I was going to have to learn to manage
my energy somehow. But if my mother’s experience
had taught me anything, it was that you must never
forget your own needs among everyone else’s. My
mother had forgotten that and she regretted it. I vowed
to myself that I wouldn’t do the same.
I have continued to work in a career that I love.
I left my marriage for the more difficult path of single
parenthood. I have attempted to hold tight to my
boundaries, taken breaks and stood up for myself while
arguing for respite. I am in this for the long haul and
I know that if I don’t look after myself, I could easily
burn out. Witnessing my mother’s decline has given me
the very strong conviction that my children’s mental
health and mine is the most important thing. No
achievements, no checklist items are more important.
When the thought, ‘Why now?’ popped in to my
head on the day she died, I very soon understood that
this was the wrong question. Instead, I looked back at
all the times she could have died and didn’t. I imagined
myself motherless at 14, rather than 22. Though the
intervening years had been difficult, they had also been
filled with love. My mother had clung on fiercely to
life in those years despite the acute pain she was in,
knowing how much we needed her.
She tried so hard, for so long.
When I talk to my daughter about
her now, I’m open about how she
died. I explain that sometimes people
get very sick and don’t feel they can
go on. But it’s not their fault and it’s
not because they don’t try hard
enough or love strongly enough.
My brothers and my dad and I don’t
spend nearly as much time together as
we would like, scattered as we are
across the globe. I do wonder if this
would have been different if Mum had still
been alive. If I would have gone home to
have my children, rather than stayed in
London. But that is a different path that
never was and I don’t dwell on it often.
Trips home are rarer now, with my son
unable to travel, so I remember her with
them here. With birthday cakes on her birthday,
and candles lit in churches on anniversaries.
My daughter is also now a young carer, just as
I was, although in very different circumstances.
Though she never has sole care of her brother, our
lives are structured around his needs and she has
had to learn very young that he must often come
first. Our household is often not a peaceful one,
with my son’s high anxiety ripping through the
house in a whirl of violence. It’s not always easy.
But she has also learned about difference and
about advocating for those who are less able to
advocate for themselves.
I will always be grateful for the time I spent
supporting my mother. Though I wish the outcome had
been different, I cannot regret all that I learned about
the act of caring for someone else, without losing
myself entirely in the process. I think she would be
proud of just how much she has contributed to my
children’s lives as a result. Not here physically, but her
legacy of love and compassion that’s always with us.‘NEVER
FORGET YOUR
OWN NEEDS’
Penny with
her son.Penny’s
mother in
1985.Tender by Penny Wincer is out now