The journey home

Not too many years ago the man who raised me was diagnosed with early onset dementia. He went from capable and kind to confused and belligerent in the blink of an eye. This was our first experience with dementia and we did not know that this phase would soon pass. Fearing for our mother’s safety, here was a 160lb solid man who did not know what was happening to him and was angry about it, we organised for him to go into a care home. This is probably the single worst decision any of us have ever made.

The thing about dementia is that decline is inevitable, but it is not inevitably fast. Care homes unintentionally speed this decline, doing things like dressing and feeding their wards for their own ease, instead of helping them to dress and feed themselves. Once taken away from them, they can never relearn a skill and soon become utterly dependent on others for even their most basic of needs. Despite daily visits from my mother, one care home’s neglect caused severe dehydration resulting in a lengthy hospital stay, leading to the permanent loss of use of his legs. He has been bedridden since. Mute for the last few years. It is an ignoble end for such a brilliant man.

As I write this, in our family home, he lays across from me in a hospital bed. My mother upstairs resting for the first time in days. The tick of the grandfather clock he loved, the hum of the pump keeping the air mattress gently rippling beneath him, the sound of his laboured breathing, all strangely reassuring.

We have brought him home to die. I’m not sure anyone has told him this though, and none of us want to rush him on his journey.

He is one of the inspirations for my journey. Not just this summer but the journey I took to today and it is my honour to share his last hours on this earth, and to ensure he is surrounded by familiar faces, by love and by laughter.

I will forever remember these last few days with him, the outpouring of support. The visits from friends and family. Stroking his face. Hearing his breathing hitch and stop, holding my own breath until he sputters into life again. My mother and I bent double with laughter as we try and manoeuvre him for one of his three hourly repositionings. Not laughing at him, but at us, the situation and at life.

People often talk about how life is short. This is never more apparent than when facing death, seeing it claim one you love.
Life is short, and precious.
It is to be lived.
To be celebrated.
To be shared.
To be loved.
Your journey doesn’t need to look anything like anyone else’s.
But damn straight I believe it should be a journey you are proud of.
A journey that says something about you.
I’ve made some missteps along the way, I’m thankful for everything he taught me, for the love he showed me and for teaching me, without knowing he was doing it, to trust myself enough to find the right journey for me Xx