Damned if you don’t, gutted if you do…

I visited my mum today. It’s been a while, what with Christmas holidays and things, but the truth is I postpone seeing her. I dread it. I fear it. It makes me crazy, and it breaks my heart. So I avoid it, delay it, postpone it, find excuses not to do it, until the cascading guilt builds up to the point where I crack, and off I go down the slippery slope of horror that is dementia.

I skip and dance around the usual paranoia triggers, and we have a relatively peaceful lunch, circling around the same two conversational topics on rapid repeat, as we always do, but without any real distress. Her hearing is much worse, but other than that she seems ok.

But then I get careless. Emboldened by her unusual calm, I suggest we should dig out the family slides and photos and get them copied for safekeeping. It takes me a while to get this idea across, but eventually she agrees it’s a great idea. You can never predict what will trigger her paranoia, but it turns out that searching for photos does the trick quite spectacularly.

So I am rummaging in dust and cobwebs, coughing and spluttering, while trying to reassure her that I am not planning to steal anything, and that she will get it all back as soon as it’s copied. Around and around and around and around we go, all the while she is getting more and more anxious. Finally I find the slides and she insists she has to go through the box before I go, in case there is something valuable in there. She is almost in tears, saying she’s not giving anything away, I have to promise she will get it all back at least 15 times before we make it out the door.

That’s when it hits me like a fist in my face. She is terrified. She is trying so hard to hold on to the structure of her life, and I have just accidentally ripped up her foundations. I did something unexpected, out of the ordinary. Her boundaries, never very flexible at the best of times, are now rigid with panic and horror, as she sees her life and her mind slipping away from her. Her grip on routine is the only thing that holds her upright, and I just pushed her over the nightmare cliff.

Her memory for the past is actually improving, oddly enough. I thought it might comfort her to have some photos of the old days, when her life was calm and predictable, and she knew what was going on. But to get there we had to cross the treacherous sea, navigate the fireswamp, and battle the ROUSes(*) of fear and paranoia.

She is lonely – so lonely – but by the time I get home there’s a message on the answering machine saying she hasn’t seen me for ages, when am I coming over?

She is afraid – so very afraid – but trying to comfort her terrifies her, lest we discover there is something wrong.

She is angry – so very angry – but she can’t quite work out why. So she fixates on something. Something she has lost, or something she imagines someone has done. And denying it only enrages her further.

By the time I get home she might have forgotten it altogether, or she might be working herself into a frenzy of rage. We might be about to receive a barrage of phone calls demanding the slides back instantly, or she might never mention them again. The uncertainty is almost the worst part. Except that the screaming is the worst part. And the fear. That’s the worst part, too. Dementia is a whole morass of worst parts.

As for me, I’ve arrived home shaken, and shaking. My heart breaks for the child behind her eyes, who wants to be held and told it’s all going to be ok, except that the paranoia won’t let her admit it. My heart breaks for the fear she battles every day. Fear that she will be hurt. Fear that she will be abandoned or taken advantage of. Fear of being in the world, and fear of being left out of it. The same fear that she uses to protect herself, and to drive people away.

And my heart breaks for me. I want my mum. And she’s long gone.

(* ROUS – Rodents Of Unusual Size. If you didn’t recognise this acronym go watch The Princess Bride immediately)