Life with David is changing fast and the holidays of our past are no more. We’ve had so many adventures as David has always thought breaks away crucial (I even wrote some of my PhD in a cottage in Cornwall).
Stripping off and diving into cold bodies of water with abandon, picnics on some mountain summit, long walks and feeling exhausted from the physical exertion of the day are all of our past. His has a blank stare much of the time – the ‘dementia face’ devoid of expression. I often don’t know if he’s uncomfortable or enjoying himself or just bored of listening to me witter on.
He can’t regulate his temperature well so can overheat or get too cold quickly, he has little spatial awareness and gets easily lost and disorientated, he hasn’t much control of his bladder, and he has the Parkinson’s gait : a slow shuffling walk which is getting more pronounced.
I ask him what he wants to do / eat / where he wants to go and I can see him struggling; searching for his answer. The nerves in his brain fail to spark amidst the tangled dementia plaques, insidiously and silently spreading. These little growths are progressively and surely taking away what he is, and what he can do.
As time passes the question I asked is forgotten and we start again, and then again, until with exasperated tones I order his meal for him and he looks on pathetically.
I invariably feel a stab of pain and regret. More worried about keeping the waitress waiting than giving my poor husband time to chose his meal? What a bitch.
I know all this too well and yet in my head he is same man he was. When planning this trip to the Austrian alps I imagined him striding ahead of me to get a vista. An open ordinance survey on the table planning a hike off the beaten track. Talking about politics, work or whatever. Instead, he’s slumped in a chair much of the time. TV on too loud. Or he’s Shuffling behind me, looking blankly ahead.
David is here, but he’s not quite here. I’m implicated in everything he does but can feel so lonely with it.
We are both learning how to be with this God awful disease. How much should I intervene to help him? How much should I let him try for himself and struggle?
And as we seem to find a rhythm and a way to face it together, the illness changes once again. I am not miserable for me (well, perhaps a bit); but am I frustrated? Hell yes. Impatient? Well, as ever. But I’m just really, really sad for him and sad for what we had together.
I guess I was less prepared emotionally for being here on this holiday than I imagined.
I want to be here, and yet I also want to run away. I know when he’s gone I’ll give anything to have him back, even in the most difficult of times. But here, right now now I wish the days away. Tired, bored, impatient, frustrated in this stunning place. In a landscape we’ve dreamed of visiting, of being in together.