Zelna, one of the carers at the Alzheimer’s day care centre where I used to take Reuben when he was still mobile, called her husband Carlos’s condition ‘Al’, as if it was a separate entity, an actual person rather than a disease. Most mornings when Reuben and I arrived, Zelna would say to me, ‘So what do you think Al did today, Lily?’ And then she’d relate one of the funny or disturbing actions that Al had ‘made’ Carlos do–like when she found him wrapping all her shoes in newspaper so that they wouldn’t feel the cold, or the way he called visiting the care centre ‘going to work’.

She even wrote a blog about it for a while, ‘Al, Carlos and Me Makes Three’, which won a couple of awards.

I started getting into the habit of calling Reuben’s condition Al, too. I suppose it gave me hope that somewhere, deep inside, the real Reuben was still there, biding his time, fighting to stop Al taking over completely. Although I knew it wasn’t rational to think this way, it stopped me blaming Reuben for taking away the last years we’d looked forward to spending together. I could blame Al instead. I could hate Al instead.

Zelna was forced to put Carlos in a care facility a couple of years ago, and when she moved to Philadelphia to live with her daughter, we lost touch. I miss her–I miss the care centre–being around other people who knew exactly what I was going through. We’d often laugh about the crazy things our respective spouses or parents did or said. I remember Zelna cracking up when I told her about Reuben insisting on wearing his boxer shorts over his trousers, like he was auditioning for the role of a geriatric Superman. It wasn’t funny of course, but laughter can be the best medicine, don’t you think? If you don’t laugh, you’d cry. So I don’t feel guilty about that. Not one bit.

But even when Reuben could no longer make it to the care centre, putting him in a home wasn’t an option for me. It wasn’t just the expense, I’d been inside those places. I didn’t like the smell of them. I thought I’d cope looking after him myself. Lori did what she could, and there was always Betsy and the agency if I needed a break. I didn’t use the agency often, there was a high staff turnover, and you never knew who you would get.

I don’t want you to think I’m kvetching, we got by, and I was lucky. Reuben was never violent. Some of them get like that–paranoid–think their carers are trying to imprison them, especially when they lose the ability to recognise facial features. And he wasn’t a wanderer, didn’t try and get out of the apartment as long as I was with him. Reuben’s condition progressed quickly, but even on bad days, when Al was in full control, as long as he could see my face when I spoke to him, he mostly kept calm. He suffered from terrible nightmares, though. But then he always was a dreamer.

I managed.

And I had my memories.

We were happy, Reuben and I. How many people can say that honestly? That’s what I’ve got to fall back on. In the magazines Lori used to get, they’re always saying how the perfect relationship is when you’re best friends with your partner (oh, how I hate that word! Partner, it sounds so cold, don’t you think?), and that’s how we were. And when Lori came along, she slotted perfectly into our lives. A close-knit, regular family. Lived by routine. Reuben was a good husband. A good provider. After Lori left to go to NYU, I felt a bit blue, I suppose I was suffering from that empty nest syndrome, and Reuben surprised me with a road trip to Texas–Texas of all places! He wanted to explore San Antonio, check out the Alamo. Before Al took his sense of humour away, we used to joke that whatever happened, ‘We’d always have Paris, Texas.’

Our life before Al came wasn’t all plain sailing though. Whose life is? There were issues over the years. Lori going off the rails at college, the lump I found in my breast that we managed to catch just in time, the mess Reuben’s mother got herself into with that younger fellow she met down in Florida. We dealt with all that.

It was Reuben who suggested we move to Brooklyn when Lori told us she was pregnant. He could see how worried I was about her bringing up a child alone. Her career was just taking off, and she needed support. I’ll never forget when she invited us to her first show at New York Fashion Week. Reuben and I were so proud! A lot of the models were men wearing women’s dresses, which made Reuben raise an eyebrow, but we’ve never been that close-minded. Plus, Reuben loved New York, was a real city person. We’d travelled around a lot in the early days when he was working as a substitute teacher, so we were used to packing up and moving. ‘Let’s go against the tide, Lily, and move into the city. Why not?’ In truth, it didn’t matter to Reuben where we lived. He was always a reader. Loved books. All books. Fiction, non-fiction, history of course. Spent most of his spare time stuck in a book, and you can do that anywhere, can’t you? That was the other great tragedy about Al showing up–one of the first things to go was Reuben’s ability to read, although Reuben hid this from me at first as well. It hurts to think of the months he sat up in bed, turning the pages of a book that he had no way of following, just to spare me the worry. A couple of months after his diagnosis, I discovered the real extent to which he’d been trying to hide his condition from me. In his sock drawer, I found a stack of index cards, where he’d written down reminder notes to himself. ‘FLOWERS’, he’d written on one. That broke my heart. Every Friday for forty-five years, he’d buy me flowers without fail.

I was a bit nervous about moving to Lori’s neighbourhood. Not because I was reluctant to leave Flemington. Reuben and I were never much for being social and the few friends we did have had already left for Florida to get away from the New Jersey winters. The house was paid up, so we had that money, but properties in Flemington had been hit hard when the bottom fell out of the market. Lori was worried that her neighbourhood would be too young and modern for us, said it was ‘full of hipsters and wannabe artists’, but there’s a fairly large Hasidic community there still, and the sight of them reassured Reuben when he first started getting really sick. Maybe it had to do with his childhood; his family were Orthodox. Lori helped us find a nice apartment block just down from the park, a five-minute walk from the loft where she lived on Berry Street. We got lucky, our immediate neighbours were older, like us, and Betsy and I hit it off straight away. We both loved needlework–Betsy was big into cross-stitching–and we watched the same shows. Reuben found her a bit intrusive at first–plus he didn’t like the fact that she was a smoker, he’s big against that–but it was Betsy who suggested he volunteer at the adult literacy centre. That, of course, was another of the things Reuben was forced to give up. He hid that from me as well, made some excuse about wanting to be home more to help me with Bobby. And oh, I loved looking after Bobby when he was a baby! We had a good year or so where he became the centre of our lives; Lori dropped him off with us every morning, and Reuben and I always took him to the park when the weather was nice. He had his moments, all kids do, but he was a bright little boy, a ray of sunshine in our lives. And it kept us busy!

Then wham. Al came along. Reuben was only seventy-one. I kept it from Lori for as long as I could, but she wasn’t stupid, could see that he was becoming increasingly forgetful, saying strange things. I guess she put it down to him becoming a little eccentric in his old age.

I was forced to tell her at Bobby’s second birthday party. I’d made a devil’s food cake, Lori’s favourite, and we were trying to get Bobby to blow out the candles. He was crotchety that day–the terrible twos, you know? Then Reuben said, out of the blue, ‘Don’t let the baby burn, don’t let him burn.’ And then he burst into tears.

Lori was horrified, and I had to sit her down, tell her that we’d got the diagnosis six months previously. She was upset, of course she was, but she said, and I’ll never forget this, ‘We’ll get through it together, Momma.’

I felt bad, of course I did, landing this on her. We’d moved to the city to help her with Bobby, and now the tables were turned. Lori had her career and Bobby, but she came to see us whenever she could. Bobby was too young to understand what was happening to his grandfather. I worried it would upset him, but Reuben’s funny ways didn’t seem to bother him.

Oh, Elspeth, those days after I heard about Bobby! The guilt I felt at not going straight down to Miami to be with him in that hospital. That was when I realised the extent of how much I really hated Al. I wanted to scream at him for stealing Reuben away when I had all this other trouble to deal with. I don’t ask for sympathy, others have it far worse than I do, but I still couldn’t shift the idea that I was being punished for something. First Reuben, then Lori. What next?

A lot of it is just a blur, there was so much going on. The phone ringing nonstop, the reporters and the TV people hounding me. In the end I had to take the phone off the hook and use that cellphone Lori had given me. And even then somehow they managed to get hold of the number.

I couldn’t step outside the door without a camera in my face: ‘How do you feel?’ ‘Did you sense he was alive all along?’ They wanted to know how Bobby was feeling, how he was coping, what he was eating, if I was religious, when he was coming home, if I was going to fly down and see him. They offered me money. Lots of money, begged me for photographs of him and Lori. I don’t know where they got that one of him on his first day at school; I suspect it was from Mona. I never came out and accused her of it, but where else would they have got it? And don’t get me started on the advertising and movie people from Hollywood! They wanted to buy the rights to Bobby’s life story. He was only six! But money was the last thing I was thinking about then. We were told there would be insurance even though Maiden Air went bankrupt almost immediately. Lori wasn’t badly off, but she wasn’t rich. She’d earmarked all her savings for me and Reuben, for a place in Florida. But we wouldn’t need that now, would we?

In truth, not all of the attention was poisonous. People left gifts, sent letters. Some were heartbreaking, especially the ones from people who had lost children themselves. I had to stop reading those letters in the end. They really did break my heart, and my heart couldn’t take much more.

Reuben’s sister, who had never once offered to fly down to help care for him before this, called three or four times a day, asking me what I was going to do about shiva for Lori. But how could I think about that with Bobby down in Miami? I was almost thankful most of the planes were grounded and she couldn’t come and poke her nose in. Betsy, bless her, took care of the food in those first days. There were people in and out all the time–Charmaine helped with that, making sure they weren’t reporters in disguise. People from the neighbourhood who’d heard about Lori. Reuben’s old students from the adult literacy centre. Lori’s friends and colleagues. All kinds of people. Blacks and Latinos and Jews, all sorts. All of them offering to help.

Betsy even got in touch with her Rabbi who offered his services for a memorial service, even though he knew we were secular. A funeral was out of the question until they released the body… but I don’t want to dwell on that. That day… when we put her to rest… I can’t, Elspeth.

One night, it had to be two days after we heard about Bobby, Reuben and I were alone in the apartment. I sat down on the bed, and felt such a wave of despair and loneliness I actually wanted to die. I can’t describe it, Elspeth. It was all too much. I had to be strong for Bobby, I knew that, but I wasn’t sure if I had it in me. I don’t know if somehow, the force of my pain gave Reuben the strength to push Al away for a few seconds, but he reached over and took my hand. He squeezed it. I looked into his eyes, and for a second, I saw Reuben, the old Reuben, my best friend, and it was as if he was saying, ‘Come on, Lily, don’t give up.’ Then that expressionless mask–Al–fell back into place and he was gone.

But it gave me the strength to go on.

Charmaine knew how guilty I felt about not being with Bobby, and she put me in touch with his psychologist down in Miami–Dr Pankowski. She helped a lot, said it wouldn’t be long before he could come home. She said his MRI was clear and he’d started talking, wasn’t saying much, but seemed to understand what had happened to him.

When we got the news that he could come home, I got a visit from the mayor’s aide, a nice young man, African-American. ‘Bobby’s a miracle child, Mrs Small,’ he said. ‘And here in New York we look after our own.’ He offered to post a policeman outside my building when the press attention got too much and even sent a limousine to take me to JFK.

Charmaine came with me to the airport while Betsy and one of the carers they’d sent stayed to help with Reuben. I was as nervous as I was on my wedding day!

Bobby was arriving on a special charter plane, in an area of the airport where the politicians and important people usually flew into, which meant that for once, the reporters wouldn’t be hounding us. They gave me a seat in the waiting area, and I could feel all the staff trying not to stare at me. I hadn’t bothered with my appearance for the last few days, and I was feeling self-conscious. Charmaine held my hand all the while. I don’t know what I would have done without her. She still keeps in touch.

The day was cold and crisp, but with one of those clear blue skies, and Charmaine and I stood up to watch the plane landing. It seemed to take forever before they opened the doors. And then I saw him climbing down the stairs, holding tightly to a young woman’s hand. Dr Pankowski had travelled with him, bless her. She looked too young to be a doctor, but I’ll always be grateful to her for what she did for him. They’d given him new clothes so he was wrapped up all warm, his hood hiding his face.

I took a step towards him. ‘Bobby,’ I said. ‘It’s me. It’s Bubbe.’

He looked up at me and whispered, ‘Bubbe?’ Elspeth, I wept. Of course I did. I kept touching him, stroking his face, making sure he really was there.

And when I took him into my arms it was as if the lights flicked back on inside me. I can’t explain it better than that, Elspeth. You see, I knew, right then, whatever had happened to my Lori, whatever had happened to Reuben, that now I had Bobby back with me, everything was going to be just fine.