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Maureen’s Story

Maureen Horne, from Harpenden, shares this honest account of caring for her late husband Gordon, who lived with PSP.

Someone once said there are four kinds of people in the world:

Those who are carers.

Those who have been carers.

Those who will become carers.

And those who will be cared for.


At different points in our lives, we may assume one or more of these roles. For many of us, being a carer is simply part of life. It’s loving someone and wanting the best for them, wanting to take away the things that are hurting, frightening them and making them suffer.

A carer is simply someone who cares.


Everyday life as a carer

The clearest memory I have of caring is of weariness, and, constant vigilance; listening, looking for every sign of change or trouble brewing. The worry never subsides, it grows.

Fear becomes a constant companion. I used to worry every waking minute about what would happen next. How I’d cope, and what would happen to Gordon if I should have an accident or become ill.

Snow and ice were a nightmare. I just couldn’t afford to fall and hurt myself. One bad winter I dressed as if accompanying Scott to the South Pole and even fitted crampon like contraptions to my boots. (Not recommended for tottering around a supermarket.)

When driving I became even more cautious for fear of being involved in an accident. Gordon had always been an impatient driver and my ultra-caution really irked! I used to tell people I didn’t need a satnav, I had a sat-nag!

Getting Gordon up in the morning and settled each night took longer and longer. He never wanted to go to bed early as he was afraid he wouldn’t sleep, or he’d wake up coughing.

I would be so tired and desperate to get my head down but I knew it would take an hour to get him settled. I was too wound up to sleep but too exhausted to concentrate on a book. My salvation was reading poetry. I would recommend it for weary brains and bodies!

Sleep disturbance became the norm as the slightest sound it would alert me.


Regrets

Carers are not heroic and constantly patient and kind…well, this one wasn’t. The perpetual state of tiredness and anxiety meant at times the milk of human kindness turned decidedly sour!

I could be bad-tempered, impatient, shout even, I’m ashamed to admit. But he was always so forgiving. Every single night he would say ‘Thank you for looking after me today’.

People tell you how admirable you are and you feel such a hypocrite thinking about when your short fuse blew, or you nursed resentment about the loss of the life you had or expected to have.


Letting go

Admitting that care at home may not be the best solution is hard to face. Some reach a point where you have to face the realisation that you simply can’t cope at home.

One day the doctor looked at me and said …’and you need help’. I’ll always be grateful to him.

Gordon’s condition deteriorated very suddenly. I will always be thankful I was holding his hand when the time came.

I was offered bereavement counselling and took up the offer very soon after Gordon died. I should have waited as when the days shortened and darkened the ‘forever’ of my situation kicked in and I was depressed.


A new sense of purpose

Ironically PSP has given my life a new sense of purpose. I run PSPA’s Hertfordshire Local Group and I find it very rewarding to provide friendship and support to others and ease their sense of isolation.

Caring can test a relationship, but conversely, it can enrich it too. It makes you realise how much we can take relationships for granted, and provide the opportunity to say things to those we love before it’s too late.

Caring can bring out the best in people. In my local group, I constantly witness examples of loving care and devoted commitment shown by families, and it never ceases to impress me.

When caring has now become formalised, institutionalised, politicised, commercialised and regulated it is easy to forget that we’re talking about one of the most basic and decent instincts that make us human…our interdependence and desire to look after those we love.

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