It’s not often I write about such a personal part of my life the way I am about to now.
As I write this, I am recovering from cancer surgery and a subsequent stomach infection.
I have just endured a week, isolated in hospital where I was so ill I feared I might not be here to tell this.
But I am here, and I want to tell you a little bit about my life.
You may not like it, but when you look death in the eye, you care a little less about what others think.
So forgive me, or forgive me not, but this is my story.
I have been caring for my father since my mother died in 2008. He is now ninety-years-old.
Before I begin, I want to emphasise that my father has many, many times expressed a wish to pass away in his own chair, in his own home.
He has been offered homes in my house and my brother’s house and has categorically refused.
If my father refuses something, there is absolutely no persuading him – unless you want to pick his walking stick out of your head while being boot-propelled through the door.
I live on the opposite side of the country to him, so caring for him means 470K round trips.
Sometimes I have gone to look after him twice in one week. Sometimes I have stayed a week or two.
But mostly, apart from when I had cervical cancer treatment, followed by an accident where I suffered severe leg injuries and had six surgeries, physio and rehab to get me back walking, followed by my recent stomach cancer surgery – I have made these trips every three weeks.
This has been my life since 2008.
Looking after a strong-minded old man who doesn’t want looking after in any way, shape or form, who many times has refused to see a doctor when he is ill and yet who still needs looking after… is painful in ways I cannot adequately describe.
Over the years, I have had to battle with the HSE to get bad carers removed, and decent carers installed.
I did this after repeatedly learning that most of the carers ‘caring’ for him were doing nothing at all and I mean absolutely nothing. The house was allowed to become filthy, his clothes unwashed, his bed not changed and worse.
Every time I visited I spent much of the weekend cleaning while being told by my father that the place was spotless because the carers had already done it the day before, or the day before that.
However, the evidence was undeniable. Pools of urine in the bathroom, unwashed towels, toilet brown with filth, bedsheets encrusted with dirt and medication, maggots crawling out of the bin, dishes sitting in three-day-old water and an unspeakable cooker and sink told me differently.
These ‘carers’ did absolutely nothing although some of them were particularly astute at telling my father sob-stories to extract money for their ‘troubles.’
They were not the only ones extracting money from my father, but that’s a whole other story, and I need to stay focused on this for now.
What made it difficult was my father repeatedly telling the HSE that his carers were ‘great.’
I was forced to provide photographic evidence and now have a file several inches thick filled with correspondence.
While my father was telling them how wonderful the carers were, I was forced to endure the HSE’s insinuations that I was lying about the situation.
Responding to the HSE’s constant deluge of phone calls, reports and emails became a full-time job. They were polite yet continually denied all my evidence and experience.
This was effectively bullying and gas-lighting me, it went on for over a year, and it made me ill both mentally and physically.
Trying to care for my reluctant-to-be-cared-for father involved tip-toeing around the land-mines of his pride while trying to protect my ears from his verbal grenades.
I was often in despair and began to suffer panic attacks while driving. On one occasion I remember considering driving my car into a train…
I know I could be criticised for saying the above. Still, I can only say that I have filled twelve years of diaries with my attempts to care for him.
If you can say the same then criticise me all you like but before you do – here is one example of what I have been dealing with.
A few years ago, the district nurse and the occupational therapist both rang me to inform me that my father’s gas fire was leaking and dangerous.
So, I visited, bringing a safe electric fire to replace it. He insisted that his fire was not leaking and that everyone was talking rubbish and nonsense.
I was terrified he would be gassed and begged and begged him to let me replace it, but he refused.
In the meantime, the nurse and occupational therapist kept ringing me to say how dangerous it was and repeatedly asked me why it was still there while warning me that I was responsible and that they had made a note of it.
Notice how these professionals were concerned enough to threaten me but not concerned enough to take the leaking gas fire away from him themselves.
Through this and other similar episodes, it has always seemed to me that many people are excellent at expressing their concern by guilt-tripping and criticising me while doing absolutely nothing themselves.
In the end, I removed the gas fire against his will. He threw me out of the house and refused to speak to me for two months. Still, I did not want him to be gassed.
I am skipping a few years of lots more of the same to bring us up to this point in time where I now have a cancer diagnosis.
I was diagnosed in October 2019. I had half my stomach removed in November and have been recovering since.
It hasn’t been easy, but I am coping. Maybe I’m selfish, but right now I would really like to take things a bit easier and enjoy whatever is left of my life.
That’s what I was trying to do when I got the messages.
A friendly and concerned relative called X got in touch – not to send me flowers and cards.
X felt strongly that my father should be in residential care and told me that other relatives, including another close relative called Y, felt the same.
X said that they and other relatives, primarily Y, were afraid that my father would pass away in his chair.
As I said above, my father does not want to live in residential care, and I will repeat that he has expressed a wish to die in his own chair, in his own home.
X said not to mention to Y that they had contacted me. This placed me in a position where I was supposed to act on a situation while pretending to know nothing about it.
Needless to say this upset me a great deal. I am aware X has their own problems, and I have never asked X for help.
My problem was that I had already explored all the care options for my father and was left with only two.
1. Allowing him to live out his life in his own home, to die in his own chair according to his wishes. This involves acknowledging the fact that it’s not ideal while understanding that it is what he wants.
2. Or going against his wishes by forcing him into residential care.
When I say forcing I mean forcing. He would have to be tied up and carried out kicking and screaming. This unspeakable option would kill him and break my heart.
Therefore I was placed in an unsolvable situation. Do what X wanted and what they said Y wanted? Or respect my father’s wishes.
And what about X?
What I have come to realise is that despite X knowing I was recovering from cancer X made the decision to send me messages which would clearly make me feel guilty and stressed.
These messages may have been well-meaning, they may have expressed ’concern’ for me, they may have dripped with ‘sweetness’ and ended with ‘kisses’, but surely X could see that they would cause me deep distress?
I’ve had a lot of down-time to think about this and have come to realise that the whole one person telling me what another person thinks, while asking me not to tell the other person they had told me, was dragging me upside down through a tunnel of shit.
To put it another way, X telling me not to tell Y they had contacted me but to do ‘the right thing’ was the same as asking me to resolve this, gagged, with both arms tied behind my back.
I do not doubt that worrying about this situation has exacerbated my illness. I’m tired, and I’m literally sick of secrets.
So I dispensed with secrets and discussed the whole situation honestly and openly with Y.
It turned out that Y also knew that my dad wanted to die in his own chair, in his own house and accepted that at ninety-years-old unless he lives forever, this might happen.
Y did not want my father forced into a residential home and accepted that there were no alternatives.
Y knows that my father was offered a place in my home and my brother’s home and refused both.
Y knows that I am recovering from cancer and is fully aware that I have done everything I can do.
The situation has now resolved itself. My father had a short stay in the hospital and is back home where he wants to be.
He may die in his chair, he may outlive me, but he is ninety years old, and that is his wish.
In the end, I did recover okay from my surgery. But from February 2020 onwards, I began to have short bouts of severe illness – this would disappear as quickly as it came but then would reappear with each episode getting worse – culminating in my recent hospital stay with a severe stomach infection.
I am now trying to recover again and would appreciate being allowed to do so in peace.
To all those who criticise, guilt-trip and even gas-light others who are caring for aged parents I would say please read below and then stop it. Just stop it now.
You never really understand a person until you consider things from his point of view, until you climb inside of his skin and walk around in it.”
To Kill A Mockingbird by Harper Lee
THE SUNSHINE GIRL
Secrets, lies and laughter.
Raining bills. A dead-end job.
Josie knows she’s trapped.
A smiling stranger brings hope.
She doesn’t listen when friends say he’s hiding something.
Instead, she brings him home to prove them wrong but this is her big mistake because his secret could destroy her family.
The Sunshine Girl is a funny and nostalgic look back at 1970s Liverpool.
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