What I wish you all knew…you feel utterly alone

Yesterday, over two years into this 24/7 caring role, when at times I’ve felt as if I’m getting better and better at being the best me for Mum, along comes a day where it feels like my tolerance levels are diminishing instead of getting stronger.

I wake up the next day after these episodes with what feels a lot like a hangover.

The surreal calm after the storm when I start to see clearly again and feel the guilt, the humility, the sadness, more pain, a different pain, and an intense desire to do so much better – among a plethora of other emotions.

Sometimes I utterly detest dementia. It’s like an evil living entity, out to pull the rug out from under us every single day.

It’s not that there’s nowhere to turn, because there is. But, in that instant, when I am lost, sinking in the rawness of the imprisonment and futility of effort, unable to make Mum’s voice stop, incapable of doing or saying anything at all that will stop her talking, or wandering up and down the hall banging and rattling her zimmer off every door and doorframe, when I am powerless to create a moment of peace without leaving the house and leaving her to it, there is nowhere I want to go because there is nobody that can meet me exactly where I’m at right in that moment.

This is why dementia carers need advocates.

We need people we can contact who know our situations and can just receive us in the moment, without trying to fix it or asking us a hundred questions in a very gracious attempt to try to understand what’s going on for us, by the end of which the point of our issue has been weakened through side-tracking and delaying, and ultimately gets lost.

And every single person’s experience of dementia is so utterly unique that comparing can be destructive and invalidating.

I’ve learned to be very choosy and particular about who I vent, share, and cry to because most just don’t hear you, and many want to fix.

People can only hear you from where they’re at; very few take the time to try to honour where you’re at. And really, all you want is to be heard, acknowledged, and loved for a minute.

In the instances that I’ve needed to contact support resources they are closed for the weekend, or closed for a bank holiday, or the person I need is on annual leave, or there simply aren’t enough staff around to answer phones and provide the support.

When you’re at breaking point this dangling carrot really highlights how much you truly are on your own in this. When you need help you need help now, not in three days time, or next week, or when somebody comes back from their holidays. This moment will be the distant past by tomorrow. Caring for dementia is a dynamic existence, it waits for no-one.

Dementia suffers from its own special form of bureaucratic neglect, and is paid no more than lip service across both health and care sectors. At ground level, we need to get so much better at it.

Mum has lost friends, as did Dad 13 years ago when he developed Parkinson’s and then dementia.

The issue of ignorance in communities and people turning their backs is rife.

Which is why the couch and the notes app in my phone have become my safe haven. When I am at my wits end, with nothing left, I sit down in my corner and I write about it. To no-one. Because this journey has become about me becoming my own supporter, my own advocate, and my own very best friend.

Thank you for reading my story.