OUCH!

It may appear that I’ve abandoned DOODAH, but that couldn’t be further from the truth. I’ve simply had little to say now that Leaf is out of my direct care. However, an event a couple of weeks ago reminded me of how difficult life had become prior to his move to the dementia ward in Lannemezan hospital. I’d cracked up which, in my case, is pretty unusual.

With Leaf now ensconced in the EHPAD (old people’s home) in nearby Masseube, I’ve been seeing him more often. Visiting hours are between 2 and 5.30pm and I have been timing my arrival to give him tea in his room. It has provided me with a role to play and meant one less patient for a member of the staff to spoon-feed. Yes, most of the inmates in his wing have to be fed. Leaf is usually co-operative but not always. Sometimes a bit of coaxing is required but we get there in the end. However, this time it wasn’t to be – he suddenly lashed out and hit me in the mouth. His nail caught my lip and I started to bleed. It was very painful and upsetting. I couldn’t stop myself, I cried. ‘What was that for?’ Not expecting an answer, I was completely taken aback when he said, quite clearly ‘Because you don’t know what you’re doing.’

That was it, not only was I in pain, but he’d managed a full sentence for the first time for months and his tone was nasty, as was the look in his eyes. I ran out of the room. One of the nurses was passing and asked what had happened. He was really kind, put his arm round me and led me to the lift. ‘You mustn’t take it personally, he can’t help it, it’s part of the disease’, he told me. Well, I know that. Dementia sufferers can be aggressive as I’d discovered in the past. Luckily, in Leaf’s case, it had been verbal not physical. But this time …

We went down to the garden and sat quietly as I composed myself. The bleeding had stopped. I said I wanted to go back – naturally. When I returned to Leaf’s room, he was calm and I stayed for about a quarter of an hour reading to him.

Now, all the people in the world, experts or otherwise, can tell us carers that we mustn’t get upset, it’s all a feature of the mis-functioning brain, but it’s no use. Someone we care deeply for, who has been kind and loving, can undergo a character change when taken over by AD. It’s a nasty fact that we have to face.

I am, of course, relieved to know he’s being well looked-after and well-fed – the menus are impressive – but I find myself in limbo. If it weren’t for my beloved dogs who give me as much love as I give them, I’d go mental waiting for who knows how long. It’s the lack of communication that’s the worst. How I miss those long discussions about anything and everything that fascinated us. Both blessed with the gift of insatiable curiosity, each other’s views broadened or confirmed our own – most often the latter.

AD can last up to twenty years and we’re roughly six or seven years in. Leaf has no co-morbidities. He is admittedly very thin and now confined to bed or his mobile bed/chair. I had hoped he might respond to some physio but he’s too far gone for that. He’s not on medication of any kind which, in one’s seventies is, it seems, an achievement in today’s world. So we could have an hefty chunk of time to endure, although I can’t imagine it. His motor neurones are beginning to lose their proper function rendering him clumsy and awkward and, quite naturally, his muscles are gradually atrophying and I can hardly say he’s very animated. But there are times when the old Leaf shines through, even if only briefly, and today was one.

He turned 75 on Friday and I was determined to celebrate in some way, however small, so I decided to make a cake. Now, I’m okay at biscuits and sweets but cakes are another matter and I’m not convinced that my oven is the greatest. I went for a basic chocolate and nut butter recipe and used a heart-shaped tin. It came out okay but, of course, I couldn’t check without cutting into it. It would just have to do. I drizzled lemon icing on it, sprinkled with hundreds and thousands (remember them?!) and bought a bottle of Muscat dessert wine. I rang the home to say I would be coming and hoped the staff on duty would join us. I had an impromptu picnic lunch with a girlfriend and the dogs beforehand.

Leaf was in the dining room and in a reasonably receptive mood when we arrived. Our little party went well and I think it registered that something a bit special was going on. The cake was good and he had several bits but refused the wine. I opened his cards and read out the messages before going to his room and taping them to the wall by his bed. Before leaving, I read from his Wordplay book, as I often do, and we had a good laugh – Leaf managed a big grin – at one of my favourite sections ‘Swearing and Taboo’. See below. We came away cheered and happy. Which I have to admit, is rare for me these days.

How do I, and other carers for that matter, cope? After all, the effects of the disease take their toll on us too. There will, in most cases, come a time when the sufferer can no longer live at home, mainly because the carer is likely to be an elderly person who simply cannot deal with lifting, incontinence and the like. Once our loved one (parent or partner) goes into care, we have to re-think our lives without them, yet not without them. We can’t make plans. We won’t want to remove every trace of them from our homes and, in most cases, won’t be able to get away for a break unless we have family members or kind friends who can and will step into the breach. Incidentally, for the rural French, that isn’t a problem, mostly they seem to have relatives galore nearby and there is still that wonderful tribal feeling where they all help each other. Not so incomers, especially those of us who have no family able to help. The situation is not only depressing but demoralising. So what can we do?

Assuming we aren’t going to walk away and not visit, we have to re-shape our lives to be bearable, constructive and/or uplifting in some way or other. This is where I’m lucky – no, not lucky, I’ve chosen to go this route. I firmly believe we create our own reality. I write or I paint to take my mind off the situation. At the moment it’s mostly my art which is like meditation, totally absorbing and rewarding as well. I’m not one for sitting still, mind a blank, drifting off wherever. I can clear my head if I choose to and do so when out in nature. The fields and woods round here are deserted. Just flowers, trees, birds and beauty. I can meld into the landscape and feel completely at ease.

I have not abandoned hope of a cure and there are positive signs but, as ever, we wait and wait and pray that when it does eventually become available, Leaf is still with us.

Namaste.