National Carers Week – hashtag – day 1

Another telephone call in the middle of the night from the Telecare services that my dad has pressed his sensor button and they are calling to make sure he is okay. He cannot hear the call, as the telephone is not in the same room and if it was, he would only unplug it. He sees at as a monetary saving cost. I see it as life-saving. How do you explain that to someone who has dementia? How do you explain “guilt”? There’s many things I feel guilty about, not doing enough, not being there on the days I have energy, not checking in when I’m up to it with work, not answering the fifth shouty telephone call blaming me for stealing money, stealing chairs, controlling his life etc. Sound familiar?

Reading up on dementia and the associated organisations, they talk about how the person remembers “feelings” – how they are remember this over everything? I often think what will I remember? How much processing do I have to do as a carer? How do I feel?

I’m a label in a system that sees me as nothing more than that. I am careful to navigate the various branches of the system, like I navigate my dad’s changes, looking for the changes is the key. Patience is also a facade to cover the anxiety that fills me. Any display to the system of frustration from me can be labelled as “unhealthy, unfit, of un sound mind, mental health issues, angry” and yet I feel all of these things.

“Take care of yourself” is what I hear often or “You are doing briliantly, I wish I had a daughter like you”. After a while, these words of support sound like patronising sanctimonous bullshit. It’s ilke each NHS services has been charged on offering this line of support. The GPs, the nurses, the Dementia Navigators, the OTs, Age Concern and so on. I know I sound so ungrateful for such wonderful services all free of charge! It’s a system of disconnection, a system that wears you down, it’s not simple and communicative, it’s hours out of your life that you will never get back, you never get paid for and you have to give back in hours of actual paid work.
These systems work in the same arena but not in the same area or hold the same responsibility. Now it’s someone else’s job, and if you ask for help, you have to do the calling, you have to fill out 26 pages of convoluted confusing paperwork. It’s like doing essays at school, there’s a construction to follow and if you don’t it’s F for failed – fucked up – fuck off.

I feel deeply for those who have no one to help or assist, for those who get left behind or lose out on monies that are rightfully theirs.

Where does all of this anger, strain, exhaustion go? In my body! I become ill, injured, sick. I forget things, I drink, I eat crappy food.

One person I need to shout out to is my partner, my hubby, I cry many a night that he is still here, present and just as exhausted, standing by me, holding my hand. Answering the Telecare services at 2am when they can’t get hold of me, patiently telling me to ring my dad to check he’s okay. The guilt I feel knowing he has to get up at 4am for work and he doesn’t get mad or angy. He is not my carer and I had to disentangle that label that was beginning to appear. He is my lover, my love, my friend, the one who makes me laugh, who tells me he loves me. He tells me how it is whether I like it or not. I don’t always agree but the respect is there.

It has not been easy and is not in any way one model fits all.

I feel exhausted – mentally – physically
I feel shitty – about me
I feel and am angry, at myself, at the world, at my dad – he’s never been easy
I’m passive aggressive – I hate it, it’s a skill I learned from my family
I feel alone/lonely – siblings who do not like me
I say sorry…a lot – a childhood trait
I feel unattractive – It’s uncomfortable to fathom the opposite
I feel fat – always
I feel non-sexy – Have I ever been?
I feel like a fake – How do I get up and still show up in the world, feeling the way I feel
I feel like I can do no right – a childhood trait
I’m stressed – I cannot breathe
I lack patience – especially when I am being shouted at by dad – I question – is it the condition or is it him?
I lack empathy – I feel numb from a compassionless upbringing
I lack energy
I hide behind a smile – It’s the only effort I can make at work
I hide behind work – I am a workaholic
I’ve lost my sense of humour – I’ve discovered, I can actually be funny…working progress
I don’t understand things that are said or the tone in which they are written in sometimes – am I dyslexic?
I forget stuff sometimes and – is this the beginning of memory loss?

Holes are dug by our deepest demons and some how some way you have to crawl, scratch, fight your way out. Some of those demons are not only within or from childhood they are out there in the physical world too, they are called “institutions, systems”.

A year out of all activities other than work. Re-focus. Prioritise. Look at working on building my mental and physical health. Working on me. Putting me first. What does that mean? I’m still figuring it out. I work toward being a better version of myself every day. I won’t get it right but that’s okay. And that has been my mantra for the last year. “It’s okay”.

It’s okay to stop, take time out, relax and do nothing, not train at the gym, not to see anyone, not to see dad on the days I am exhausted and have zero per cent resiliance. It’s okay not to do my passion for a year, not to be involved or be seen. It’s okay to be me, find me and live with me.

When I asked for help from my dad’s GP and my GP, all the words they could offer was “have I thought about giving up my job to become a full-time carer?”, instead of suggesting counselling. I was pretty shocked and astounded about how loaded that question was. Sexist, yes! At no point did they say I could “self-refer”. When your mind is consumed with a thousand things that are not yours, some guidance to a new path could be given.

I hope you find yours.

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