Additional Needs

Our First Hospice Visit

Posted by One of the Wonders on 30th November 2016 Additional Needs, Advice & Support, Disabilities

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Death? Dying? Sadness? The end?

Until a few months ago, I’d never set foot in a hospice.

My grandmother passed away in a hospice several years ago, and while I was overseas during the short period she was there, my father talks fondly of how her last days were spent in a calm, non-medical environment, where she was at peace.

Having your child referred to a hospice, however, sounds like the stuff of nightmares.

A children’s hospice sounds like the saddest place on the planet.

A place you want to totally avoid.

Except, that wasn’t our experience.

Our 5-year old daughter, Miss Z, has always been medically complex as well as having multiple disabilities.

Although my husband and I have always known that children that suffer from Miss Z’s conditions – such as uncontrolled seizures, aspiration, chronic chest infections – often lived shorter lives, it wasn’t until last year, when things got really bad, that she was officially diagnosed as being “life limited”.

She was referred to the Palliative Care team at the hospital and her doctors began a conversation with us about resuscitation plans and what sort of medical measures we wanted to prolong her life.

We had to have painful, honest discussions, just the two of us, about what we wanted for Miss Z and where we could draw the line…and still live with ourselves.

Out of those conversations, one thing became clear to me. Miss Z hated being in the hospital and was unhappy there.

So, if/when the situation arises, I want her to spend her last days at home or in a hospice, not in the hospital.

Although hospice movements in the UK and the US are well established, Australia is sadly lagging in paediatric hospice care.

However, here in Brisbane we have been blessed with some people who recognised the importance of having a children’s hospice in Queensland – and then set out to build one.

Our family have been enthusiastic supporters and fundraisers of Hummingbird House – the first children’s hospice in Queensland (and the third in the whole of Australia).

However, there was still a part of me that really felt like we weren’t the ones who needed it.

In fact, when we had our first conversations with the hospice, I pointed out that Miss Z had emerged from her “bad patch” and was much healthier and our family was coping – so we probably didn’t need much in terms of their services at this point.

Then we had our first family respite weekend at the hospice.

And I realised how much we really did need it.

Suddenly all the responsibility for Miss Z’s care that we have internalised, that we just get on with, that sucks up so much of our daily lives, was lifted.

I didn’t have to carefully draw up all her medications and gradually give them to her at night before I went to bed.

There was no sprint to grab the suction when Miss Z started coughing. I didn’t have to keep an eye on her feed pump to make sure she was getting enough nutrition at the right speed or make sure that one of us could always see her in case she had a seizure.

All the care was taken over by a group of exceptionally kind, gentle nurses – one of whom was always with Miss Z.

At first it was difficult for me to hand over Miss Z’s care. But I gradually relaxed into it. And the nurses were quite happy for me to get involved and then step back again.

But what really made me relax was that Miss Z enjoyed it just as much as I did.

There were endless activities for her – cuddling the hospice chickens, taking a turn in the garden, lying on the waterbed in the sensory room watching the fairy lights twinkle, rolling on the floor in the lounge or the playroom, to name a few.

All the activities were accessible to Miss Z, even though she isn’t able to sit or stand independently. And when she got tired, her carer would take her somewhere quiet for a nap.

Seeing Miss Z happy and able to engage in activities with her big sister was priceless.

As was being able to sit in the garden and read a book. And not worrying about preparing meals – not to mention eating food that was vastly better than anything I could ever cook – was wonderful.

There were a few confronting moments.

During our stay, my husband and I were shown the end of life suite – where families can stay after their child has passed away to say their final good-byes.

It was beautiful, but I was overwhelmed by the thought of how much sadness that room was going to see in the years to come.

However, overall, our stay at the hospice had nothing to do with death or dying.

It was all about relaxing, having fun as a family, and making some memories.

It made me realise that our family really does need that.

And now, we can’t wait to go back.