December 2013

I read the letter for the tenth time as we sat in the waiting room. From:-

 

Dr N HunterConsutlant in Old Age Psychiatry

 

You don’t want to see mistakes like that from your doctor. If you can’t trust them with their spelling, why should you trust them with your health? Thank God we weren’t there for an operation.

— I’m sorry, we made a little mistake when we stitched you back up. Some of your parts went back in the wrong order.

And what was this about ‘Old Age’? We’re not old, Lena and I. Other people get old, not us. I remembered the question I heard on a radio talk-show once – it had stuck with me for years: ‘How old would you be if you didn’t know your age?’ Exactly. Age is all in the mind.

I noticed my knees doing that shaking, trembling thing. They were nervous.

Lena wasn’t nervous though. Leaning back relaxed in her chair, her gaze was fixed on the only splash of colour in the room, a huge landscape photo on the opposite wall. A lavender field. Purple. Dense. Intense.

— Pretty, yeah?

— Uh-huh.

Isn’t lavender supposed to have a calming effect? It wasn’t working for me.

 

The problem was I’d been here before, not in the same room, but in a hospital waiting-room in Stockholm. Almost 30 years ago, but it felt like yesterday. We’d decided to come back to Europe now we were having our first baby, and we were staying with Lena’s folks in Sweden for the birth, planning to move on to the UK later.

The pregnancy had gone perfectly, but when Lena was a few days overdue, her doctor decided it would be best to induce. So that morning we’d taken a taxi to Karolinska, the university hospital, laughing and excited, all ready to welcome Amber into the world.

Lena was led off to prepare for the operation while I was left in the waiting-room.

Waiting.

Waiting.

Finally, a white-coated doctor opened the door, his face tight with concern. He touched, brushed my arm.

— I’m sorry Mr Miles, but we can’t find the heartbeat. Lena’s baby has died, sorry to say.

 

Sometimes life comes up from behind and mugs you.

 

Today was different though, like slow torture. I knew what was coming, had known for a few years. I knew what they’d been looking for in those tests a fortnight ago. I just didn’t want to say its name.

 

That letter.

If you have a relative, friend or carer, please arrange for them to be present at this appointment.

Why? It was hardly likely to be good news, was it?

 

A girl came in, casual, in jeans and a loose sweater – almost lavender again, I noticed.

— Mr and Mrs Miles? Hello, I’m Alice. Dr Hunter is ready to see you now.

She led us into the room next-door, smaller than the waiting-room, dingy, bare, cold. She ushered us into two unstacked chairs, closed the door firmly and squeezed into her seat next to it. Opposite us, beside a desk that dwarfed her, sat Dr Hunter. She looked pale and ill, perhaps because she was framed by the window behind her. Her wrist was heavily bandaged. Her hair was in a tight bun. There was a steady rain outside.

When she spoke, it was a voice without colour, quiet, factual.

— Good morning. I’ll come straight to the point.

She didn’t use our names.

— We have the results of your SPECT scan and it shows a reduction in the flow of blood to the frontal and parietal areas of the brain. That suggests a possible Alzheimer’s disease, although the characteristics of the frontal lobe involvement are not typical of the early stages of the disease.

Dr Hunter could have been talking Swahili, as far as I was concerned. The only reason I’ve been able to put these sentences together today is because that was what she wrote in her report passed on to us by our GP 10 days later. There were just two words I did understand.

Alzheimer’s Disease.

It had finally been named.

I reached across for Lena’s hand, looking for reassurance. But her hand wasn’t there, busy already supporting her chin as she leaned forward to concentrate. She’d heard those two words too. She knew all about Alzheimer’s.

 

Her father had Alzheimer’s at the end of his life, and I remembered her tears as she described her last meeting with him. She’d flown back to Sweden to be with him at the end, and he hadn’t recognised her. He thought she was a care visitor and shouted at her.

Or maybe she was thinking about her favourite client when she was a care worker in Cambridge just a few years ago. He had Alzheimer’s too, and he told her rambling stories about his time as Pink Floyd’s drummer before they were famous. He lived alone in an armchair and Lena would let herself into the house twice a day to help with washing, dressing, feeding, turning on the TV. She fretted that two half-hour sessions were never long enough. He needed someone for the other 23 hours of the day, for comfort and conversation and just to keep an eye on him, she said. Sometimes he drew her child-like pictures in crayon and she brought them home to show me. One day he wasn’t there. Apparently he’d tried to hit his brother who’d dropped in for a rare visit, so they locked him away in a care-home, she said. For everyone’s safety.

Yes, Lena knew all about Alzheimer’s.

 

 

I wanted to be sure that I’d translated Dr Hunter correctly.

— I think you said a possible Alzheimer’s Disease – does that mean it is Alzheimer’s, or it isn’t?

— We can never be quite sure about these things, even with the scan, but in my professional opinion, yes, what we’re seeing is the early stage of an Alzheimer’s dementia of early onset.

— Early onset?

— Yes, that simply means the symptoms have been diagnosed before the age of 65.

Somehow it felt like a criticism. As if we’d arrived too early for the party.

Some party!

And now it was back to consultant-speak again – something about an inhibitor, contra-indications, risk-benefit analysis, and needing an ECG first. At least I understood what an ECG was.

— So there’d be an ECG and then what?

— Then we’ll know whether it’s safe to take the drug.

— A drug? But I thought there was no cure.

— There isn’t. But this might inhibit – delay – the worsening of symptoms. Is that clear?

Lena nodded. She’d been nodding for a while, tracking each word. But nothing was clear to me.

— So how is this drug taken?

— It’s a pill. A course of pills, taken daily.

— And it might help?

— Yes, it might slow things down, if the ECG shows it’s suitable.

Dr Hunter turned to some notes on her desk, and rattled through her other points. Research had shown that Alzheimer’s could be hereditary: the risk increases by around 30% if a parent had it. So if our three children – they were in their 20s, weren’t they? – were interested in genetic counselling, she could arrange it. Genetic counselling? I thought I knew what she meant, but her flat, matter-of-fact tone somehow made the phrase sound like a sinister experiment in eugenics, a scientific term I knew.

Then she told us we should arrange a lasting power of attorney, the legal way to ensure that medical and financial decisions are made in your best interest, when you’ve lost the ability to make the decisions yourself. Alice would explain the details in a moment.

And finally, she was aware of a Warwick University research project investigating the impact of moderate physical exercise on patients with early onset dementia. Would we be interested? Lena was nodding again. I wanted a cure from Dr Hunter. She was offering a straw. I clutched at it.

— That’d be good.

— Right. So now, are there any other questions?

Lena turned to look at me with a sad, sympathetic smile. My head was full of questions, so full that none of them could find the way out.

— No? Well, if that’s all, then I have another appointment …

She touched her bandaged wrist.

— … so I’ll leave Alice to explain some of the practical help that’s available.

She stood up, and limped out of the room.

 

Alice moved her chair closer to us and pulled a bunch of booklets and leaflets from a bag on the floor. She smiled reassuringly.

— Are you both OK? Yes? Well I want to tell you about all the support you can get in Salford. I’ll start with financial support, carer’s allowance, that sort of thing. Then I’ll explain the arrangements for domiciliary care, if you feel you need it – that’s when carers come to your home to help out. And finally I’ll tell you about some of the super dementia activity groups we have in the area. I’m sure you’re gonna love the Young Dementia group at Mount Chapel – they have so much fun every week. And here, I’ve got lots for you to read, telling you all about everything. So you know what your homework is tonight!

In different circumstances, I’d have enjoyed the 15 minutes we spent with Alice. She was trying so hard to put a positive spin on our catastrophic news. But I knew it was just spin. And my head was spinning. And I wanted to get out of this hateful office and go home with Lena. Like Lena, I was just nodding and making polite noises, but nothing Alice said went in. My mind was somewhere else.

 

We stood outside the building, Lena and I and our leaflets, sheltering from the rain as we waited for our taxi. I pulled her close to me and held her.

— So, my Lena. It’s Alzheimer’s.

— I know. I feel so sorry for them.

All this time, Lena had no idea it was her diagnosis we’d been talking about.

 

When we got home the first thing I did was to rip all the leaflets to shreds and trash them.