The very tones in which we spake
Had something strange, I could but mark;
The leaves of memory seemed to make
A mournful rustling in the dark.
—HENRY WADSWORTH LONGFELLOW
THE EMERGENCY CARE MEETING IS HELD IN THE TOWN, at the swanky new social work offices that look, appropriately enough, like a cross between a medical practice and a solicitors’ group and smell pungently of carpet. There are four of us present. Me, Chris, our care manager, and the care manager’s boss, whom we’re meeting for the first time. The first thing the boss has to say is that we can’t see the file because Morris would have to give consent. (Why would we want to see the file? Is there something in it that’s material? We’ll never know.)
“So how are you, and how are things?” we’re asked.
“Desperate, and desperate,” I say.
“We need to establish why Nancy isn’t on the residential waiting list,” Chris says, “and how we can get her onto it.”
“We can do another assessment,” the boss says. “Things seem to have deteriorated badly since the summer.”
“All that’s changed lately,” I tell her, “is that she’s no longer so charming with outsiders, and doesn’t mask her condition so well.”
We talk about Nancy’s MMSE result, which the doctor has been in touch about. “That really is quite a marked deterioration,” the manager comments. I point out that she hasn’t had the test before.
“We’re confused about what the criteria are for getting onto the waiting list,” Chris says again.
The sea change is coming. It’s seconds away. And it happens by accident.
“The thing is, we can no longer cope,” Chris says. “We can’t do it anymore.”
“Every day is a struggle,” I concur.
“Are you saying you can’t go on?” the boss asks.
At once, I begin backtracking, feeling as if I’m about to be judged inadequate.
“We’re at the end of the road,” Chris tells her. “We can’t any longer care for them, unfortunately.”
“So. You’re saying that you can no longer look after them. Is that what you’re saying?”
“Yes. That’s what we’re saying.”
“It’s much more difficult now,” I add, “to manage Nancy at home, because she’s threatening the children, and hitting them.”
The professionals look at each other.
“Well, in that case, emergency respite will have to be arranged with immediate effect,” the boss says. “We’ll have to consider the long term. And the Family Division will have to be informed.”
Family Division? I have visions of cars arriving at dawn, the children hauled off, and protest energetically. There’s an instinctive fear of social workers, the extravagance of their powers, buried just below the surface of all my dealings with them. The social workers say, with regretful finality, that they have no choice, now that the abuse has been reported; they have a legal obligation to report violence upon children.
No care places are available locally, so respite will involve a journey into the next county. We mention that Morris is keen to return to Edinburgh, and they tell us they can get names onto the Edinburgh waiting list. In the United Kingdom, it’s worth campaigning to have the list placement done by the social work department, rather than just going ahead and finding somewhere yourself. If it’s their referral, the nursing portion of the fee is paid by the sponsoring council. This isn’t to be sniffed at, being £150 or so a week each, saving £15,000 a year. Even so, it will be around £35,000 a year for the two of them (by national standards, this isn’t expensive). Discreet inquiries are made about means.
“They have the money to pay their own way for the first few years,” Chris says. “They have their life savings. The rest of it’s invested and will have to be de-invested.” It’s our house we’re talking about; that portion of it that Nancy and Morris own. The house will have to go on the market. All assets count. Their savings, investments, all of it will be liquidated into a pot from which the state will drink hungrily. It will leach away, month by month, until there’s £20,000 left. Only at that point will the state begin to contribute. At the time of writing, the rules dictate that only the final £12,250 will be left intact, untouchable by the state. This information hits Morris hard. It’s a disheartening thing to face, for those who’ve always been frugal. The people who held on to their ancient washing machine until it gave out, who were content with the old linoleum in the kitchen, who put money by for a rainy day—their rainy day has come. The make-do-and-mend philosophy was all about providing an inheritance for Chris and his sister. But getting old and ill will take almost everything. It’s raining hard now.
Once you have it clear in your mind that Alzheimer’s is a disease, whose sufferers are ill, and that what’s needed for it is treatment, the idea that a nursing home is optional, a luxury, and will be invoiced on that basis, is deeply offensive and wrong.
Next, the care twosome pays a house call. It’s Morris they want to talk to and they go into closed session. He’s anecdotalizing and hoots of appreciative laughter boom out under the closed doors. On this occasion laughter isn’t a good sign. It means, almost certainly, that Morris is illustrating that the problems, such as they are, are blackly comic at worst. Later, Chris tries to talk to his father about the meeting but is met by the usual studied vagueness.
Three days later. The phone rings. Our care manager. Can she come out today to talk to Morris again? She’d want us in on the conversation this time. “Will you sit in? Because he doesn’t seem to believe that there’s a problem.” She asks me if I will be frank with Morris about being at the end of the road, at the end of my tether, and needing the two of them out. No, I can’t do that, I tell her. I’m not going to be a part of any staged resolution, no emotional pleas, no histrionics. I’m certainly not going to confirm anybody’s dark suspicions that this has all been about me.
Nancy’s up all that night, wandering, rattling doors, and ranting. She won’t take the sleeping syrup; she clamps her lips together and flat refuses to comply. Her nocturnal narratives begin to remind me of somebody with a head injury trying to keep herself from losing consciousness. One foot is put in front of another, literally but also verbally, without there being any really strong thread at work. Just keeping going is the thing, keeping walking and keeping awake, with whatever words come to hand.
She has extraordinary stamina. Nighttime sleep is intermittent and daytime naps have been given up but she keeps on going nonetheless. She badgers Morris all the next day and is still badgering when I deliver the afternoon tea.
“I’ve told you already, I want to go for a walk.”
“You can’t go for a walk, it’s dark outside,” Morris tells her.
“I have asked you a hundred times,” Nancy says.
“What are you talking about? I can’t walk. I have a wheelchair. You’ll have to push me. We’ll do it tomorrow. It’s too late now.”
“It was the same with my father. He was standing at the door and he said something to me and you closed it.”
“Your father?”
“You closed the door on him when he was here. He was talking to me.”
“Your father’s been dead for thirty years.”
“I know the truth and you don’t. He died last night.”
She’s weeping now.
“Thirty years!” Morris roars. “He’s been dead for thirty years!”
“It all comes to money,” Nancy tells him. “They want my money.”
“Who does?”
“They know who they are and where they went and you don’t.”
“I haven’t the faintest idea what you’re talking about.”
“Well, that’s what I’m saying. You’re my father.”
Morris (apoplectic): “I am not your father. I am your husband.”
Nancy’s whimpering. “I’ve told you a thousand times but you don’t listen. We could go home if it wasn’t for you.”
Morris is yelling now at the top of his voice. “I’ve told you! I can’t walk! You’ll need to push me in the chair.” And then, calmly, “It’s dark now; we’ll do it tomorrow.”
ON THE MORNING of the assessment I have a brief conversation with Morris.
“You know that it’s coming, don’t you? We can no longer cope with Nancy in the family. You know that, don’t you?”
“Yes.”
“And you will want to go with her, yes?”
He’s decided against Edinburgh, though. He’d rather stay up here. He doesn’t think the old Edinburgh friends would visit them, he says. Not once the novelty had worn off.
The care manager and the boss arrive, and ask, ominously, if they can talk to Chris and me first. We repair to the drawing room. The boss appears to have a speech prepared. She tells us that it’s going to make this whole process a lot more difficult if Chris and I won’t speak to Morris directly about our feelings and won’t agree to go on the record as having done so.
She’s talking about the phone call, the one in which I was asked to tell my father-in-law that I need him to leave, in circumstances (social workers present) that might look engineered. But this isn’t about feelings. It isn’t about Morris. It’s about Nancy, and Nancy’s unhappiness. Nancy’s health. I don’t think the social workers see that. I don’t think they understand Alzheimer’s. I think they look at us, Chris and me, and see people giving up, capitulating, dumping.
Morris needs to give permission for Chris and me to sit in on the meeting. He says he wants a confidential talk with the two ladies first. I say to him that I feel at this stage of things that he ought not to have anything to say to the social workers that he couldn’t say to us. This angers him. The social workers are hovering so I leave the room, embarrassed. Foolishly, I pause at the door, and hear Morris berating me for wanting to know everything, wanting always to be consulted, for wanting to be in charge, for being interfering and bossy.
Fifteen minutes later, we are admitted to the room. Nothing’s said about the confidential talk. Long explanations follow about how the waiting list works—not as a queue, it turns out, but strictly according to need. Every time a place comes up, the whole list is consulted for the best match. And it’s possible that a double room will become vacant this spring.
Morris is emotional, his eyes brimming, his voice quavery, when the boss asks if he is happy to go into the nursing home. I feel like I might cry myself. Pity and relief are fighting for top billing.
“Not really,” he says, “but what’s the alternative?”
“You could stay here. We could offer more help. But I think you’re aware that your family are having difficulty coping.”
“Well, if that’s the case, then there isn’t any choice,” he says.
The boss says something about confidentiality. Morris’s reply is surprising.
“There’s nothing you say to me that you shouldn’t say in front of my son and daughter-in-law. They have looked after us magnificently.…” The phone rings out and I have to excuse myself to answer it, so I miss the rest of this tribute.
The day before they’re to go off to respite, Nancy is spoiling for a fight. By lunchtime she and Morris are in open warfare.
NANCY: You are getting on my nerves, I wish you’d clear off out of here.
MORRIS: Oh that’s very nice. We’ll both shut up, then.
NANCY: You talk to me as if about I was a child.
MORRIS: No. I talk to you as if you were a child. There’s no “about” in the sentence. That’s what you should have said. Why don’t you rub your fingers together?
NANCY: Why should I do that?
MORRIS: You do it all day. Rub rub rub. I’d like to know why myself. Why don’t you twiddle your hair?
NANCY: That’s just ridiculous. I do nothing of the sort.
MORRIS: Why don’t you stick them up your nose?
NANCY: That’s completely ridiculous.
MORRIS: That’s right. I’m being ridiculous again. Which is another way of saying that I’m totally fed up.
Cases to pack. Morris doesn’t want to be involved in this. He watches television and I take suggested clothes and books through for approval.
When I go into their sitting room later that evening to take Nancy to bed, she has that look on her face: the warning look, pinkish violet, with lips in a tight purse. She goes to the bathroom and I sit on her bed to wait for her, feeling uneasy. Things can get out of hand at this point in the day. She sits on the toilet and free-associates. At least I think that’s what she’s doing. But it occurs to me after a while that she might be talking to her urine.
“You’re going to go there and do the right thing and go down, and that’s right. And I will have to talk to her about you and where you need to go next.”
Now she is having trouble with her underwear.
“Are you all right in there?” I call through.
“Yes. No. I’m coming. I’m coming, I tell you. I’m telling you straight.” Her head bends to deal with errant clothing and her voice is muffled accordingly. “You don’t go on right anymore. You used to know where to be but now you don’t. And she will have something to say about that.”
A few minutes later she trundles through.
“Right then,” I say. “Let’s get you changed for bed.”
“I’m not getting changed, I’m bloody freezing.”
“It’s warm in here, Nancy, with the heater on. I’m really warm. Aren’t you warm?”
I start to unbutton her cardigan. An old veined hand clamps itself over mine.
“Now come on,” I say. She just stares at me. She is as ever astoundingly strong. “We just need to get your nightie on.”
“But I’ve spent all my life trying to get it and it isn’t there. You don’t know the first thing about it.”
I have her cardigan off now and she consents to her sweater coming over her head.
“Now that’ll do fine. I’ll just go like this,” she says, holding on to her blouse hem tight, her knuckles white.
“Look. Your nightie and your fleecy bed jacket. You’ll be warm as toast.”
“Hum huum, hum huum, hum hm-hm.” Her favorite tune. She hums it now. She can no longer rhyme.
I whip the vest off and get the nightie on, the zip jacket. “You’re going on your holidays tomorrow,” I say, grinning at her.
“I am not.”
“Yes, you’re going away on your holidays, with Morris.”
“Who’s Morris?”
“That’s your husband.”
“Oh. That’s what you say. That’s my husband, is it. You don’t look like my husband.”
“No. I’m married to your son. Yours and Morris’s.”
“I don’t have a son. I never had children and I’m glad because they just disappoint you.”
Here comes the crunch. The trouser and underpants removal from under the long skirt of the nightdress, pulled quick and altogether like the magician’s tablecloth. “Oh Christ! What the hell do you think you’re doing?”
“Good night, Nancy! Sweet dreams!”