Read The Skeleton Cupboard Online
Authors: Tanya Byron
We'd then spent a whole hour exploring our defenses to being in this navel-gazing circle, each of us wishing we were somewhere else. The group hated me. I hated Dr. Gee.
*Â Â Â *Â Â Â *
“So, Harold Samuels, aged sixty-nine and in cognitive declineâwhat are you thinking?”
I snapped back into the room. Harold Samuels was the first patient I was due to see at the care home, later that morning, and I didn't feel ready.
Chris said, “I'd say we'll look at the neuro angle here first: a definite case for assessment and differential diagnosis.” Then she turned to me. “What do you reckon?”
I recovered myself. “Yes, sounds good to me. I'd really like to spend some time with Mr. Samuels and also interview those on the nursing team who know him, if that would be OK.”
A frosty, lacy-titted nod.
“Alsoâagain with your permission, Dr. GeeâI'd like to have access to Mr. Samuels's charts.”
“Why? What's that going to tell you? You're not a medic.”
She was making me sweat. I saw Chris reach for a cigarette.
I licked my lips, tried not to let my voice shake. “Dr. Gee, I'm not looking for medical incongruities. It's just that it would be helpful for me to chart changes in medication and physical function against the changes seen in Mr. Samuels's cognitive function.”
“Changes in function?”
“Appetite, sleep, bowel functionâthose kinds of things.”
Chris sighed. “Look, Anne, don't make this any harder than it has to be. I know you hate us clin psychs coming onto your patch, but here we are. And you know what? There seems to be a need for our skills in terms of the ongoing management of this elderly chap in cognitive decline.” A long drag on the cigarette and a slow exhale. “What is being proposed by my trainee sounds entirely appropriate. Can we just get on?”
“Indeed we can, Chris. Happy to support the learning of those helpful professions allied to medicine. But would you mind very much taking your cancer stick outside?”
*Â Â Â *Â Â Â *
Dr. Gee's assessment of Harold: “Mr. Samuels has only just joined us, although his wife, Sarai, who is suffering from Alzheimer's, has been with us for almost two years. His current functioning is stable in some areas, but it's compromised in others: His short-term memory is becoming poor. For a very highly educated, articulate man, he now seems to have more difficulty finding words than one would predict, even for a gentleman for whom English is not his mother tongue.”
I nodded. “How have you assessed the short-term memory impairment, Dr. Gee?” I asked.
“I've done a quick screen using the Mini Mental State Examination, but no specific testingâthat's what you're here for, isn't it? But I do occasionally have to reintroduce myself to him. He forgets who I am.”
Jesus. No one could forget Dr. Gee. I worried about Harold's brain.
*Â Â Â *Â Â Â *
Harold Samuels was sixty-nine years old and an Auschwitz survivor. A retired professional, he was educated to doctoral-degree level. With no significant alcohol issues or depression, he had become subjectively aware of his memory problems: He'd become a little repetitive, was having difficulties finding words and seemed to show some spatial disorientation.
My first job on this placement was to assess Harold using a battery of cognitive tests and to determine whether he was showing early signs of dementia.
Harold believed that he was following his wife, Sarai, who was already a resident of the home, into dementia.
“Why did you come? Go, go before it's too late,” Sarai would warn her husband when he came to visit her in the care home. “They're killing people here. You don't understand.”
Alzheimer's had sent Sarai back to Mauthausen, one of the concentration camps in which she had been held during the Second World War. She was reliving the Holocaust on a daily basis.
“You can't approach Sarai from behind,” Harold told me when I first met him. “She'll ask, âWho are you here for?' because she's reminded of guards entering her concentration-camp barracks.” Reliving the roundups, selections, starvation, brutality and the killing of her mother and three sisters in front of her, Sarai had become acutely anxious, paranoid and suspicious.
Because her temporal lobes were shutting down, Mrs. Samuels was living on her limbic system: perpetually anxious and hypervigilant to threat, ready at all times to snap into fight-or-flight survival mode.
I read the clinical notes. Throughout their long marriage Sarai had comforted Harold through the flashbacks and nightmares that brought his time in Auschwitz back to him in the middle of the night. She would reassure him, as he feared her abandonment, and lightly brush over uncomfortable moments where he would read anti-Semitism into the innocent comments of others. And because Harold had always found it difficult to stand in a queue or deal with uniformed personnel, Sarai ran every aspect of their lives and their household. Sarai was “my princess,” Harold said, and indeed she had been named so, after the wife of Abraham and mother of Isaac in Genesis.
Two survivors. Sarai had been Harold's rock as they built their life together. He had to watch her crumble and slide into dementia. She hoarded food, stockpiling it in her room, and she continually blocked the air-conditioning vent, convinced that noxious fumes were coming in to poison her and her husband.
Eventually Harold had to move Sarai into the care home, where he would come spend every day with her. Her long-term memory was intact, but the dementia ate away her ability to remember one minute to the next.
Sarai would become hysterical when showering: “Harold, Harold, we have to go. This is no place to showerâthey are killing us.”
And so Harold would wash Sarai himself, standing at a sink, while she tried to put a damp cloth over his nose and mouth.
I put down the notes. My hands were shaking.
*Â Â Â *Â Â Â *
When I went home that afternoon, Harold was still very much on my mind. I felt out of my depth. That evening the girls came around and I decided to practice my professional skills on them over a bottle of wine and a number of cognitive tests.
“OK, girls, I'm going to talk about cognitive reserves.”
Laughter, conversation: No one was taking me seriously.
“Come on. Listen! Tomorrow I'm going to assess an elderly man who is possibly in cognitive decline and I have no idea how to do these tests.”
“So is he losing his mind?” asked Ali, freshly returned from her travels round Asia; she took off her suit jacket and kicked off her black pumps. “Sorry, girls, my feet stink.”
As Ali went over to rummage through my fridge, I gave them Harold's background.
“But he won't know about it, will he? If his mind is going?” Rosie, my girl who was visiting from university, looked anxious. “I've never known anyone with dementia. Have any of you?”
Ali and Megan shook their heads.
“The thing is, Rosie, he does. These cognitive reserves he still has mean that when he is present in the here and now, he knows that he is losing his mind. And given that he has seen his wife losing hers, he has a sense of exactly what is happening to him.”
“You can stop him sliding into that place, right?” Rosie asked.
All my girls, even Megan, the one with the research science background, looked anxious now. Wine was poured.
“You can stop him going into that place if you know he's going there, can't you?” Megan, ever the scientist, was looking for a solution.
I shrugged. “This is dementia. You know how it is, Megan: big clumps of beta-amyloid protein forming plaques in the brain; neurons tangling up like broken spider webs; connections getting lost. The here and now is being eroded, so the brain relives the past. For Harold, reliving the past is going to be worse than brain death.”
“Why?” asked Rosie.
Ali passed the wineglasses around.
“It means he knows that he is slowly being consigned to relying on his long-term memory to try to make sense of the world, which in his case takes him back to a time and place so bad that you'd only want to be put down.”
I loved Rosie because I could see, suddenly, that she was as afraid as me. She knew that what I had to learn would lead to a diagnosis. When I passed that diagnosis on to Harold, he'd be left with nothing to do but wait to slip below the surface, into darkness.
“Are there any other explanations?” asked Megan.
“Yeah. We're testing him in the hope we can make a differential diagnosis.”
“Meaning?”
“I am trying to work out whether this is dementia or delusion or perhaps a B
12
deficiency or evenâget thisâconstipation.”
“B
12
deficiency?” Megan was in territory she understood.
“You have to rule out all the physiological stuff because physical problems can affect memory. Vitamin B
12
deficiency would do that. So would an underactive thyroid gland.”
“And constipation?” asked Rosie.
“Because being chronically constipated when elderly is so toxic it sort of poisons your brain. The symptoms can masquerade as a pseudodementia.”
“OK,” said Rosie. “I will be your subject, but let's just
please
find out that all Harold needs is a bloody big enema.”
I unwrapped my testing materials and laid them all out on the table.
To begin with, I explained that premorbid functioningâthe way Harold's brain worked before the cognitive problems had begun to kick inâhad to be established if neuropsychological test interpretation had any chance of determining the extent of intellectual changes caused by a possible organic disease.
So I first practiced the “hold tests” that would help me work out Harold's predementia cognitive function.
“A hold test will help us tap into cognitive abilities that are the last ones, the least likely, to show cognitive decline. This can tell us how a person functioned before the brain erosion kicked in.
“So,” I said, grappling for my testing manualâI had no clear idea what I was saying, “I'm going to administer a word reading test because that will test those brain capacities that are the most resilient to atrophy. So, in this test⦔ I quickly scanned the manual to get the explanation right. “Sorryâbear with me ⦠OK, I will get you to read and pronounce words that have an irregular grapheme-to-phoneme translation; so if you don't know the word, you can't guess it by how you sound it out. What you know in terms of your vocabulary size indicates your IQ.”
Rosie looked blank. I took a slug of Chardonnay.
“OK, sorry, I have no real idea what I'm saying here. I'll try again.”
Another quick gulp of wine.
“So the thing is, you can only really find out if someone's brain function is declining because of organic decay if you are able to work out what is called their premorbid level of functioningâhow their brain worked before problems started. So what we do is assess their known vocabulary, by using test words that are unguessable. Words they just know, that are hardwired and stored in the long-term memory and the last to be affected by a diseased brain. So, the more educated, the greater the vocabulary, the higher the IQ. Dementia doesn't take that away until the very end. These hardwired capacities are the last to go.”
“Come on, I really, really want to help you understand this. Get testing,” Rosie said, eager to help me learn how to assess Harold.
“OK, sweetie, let me just set up the tests.”
“Hey! No, no, no, if you can be the doc that does the testing, I am not your sweetie; I am your patient! So bloody hell, Doc, please talk to me in a way that feels like I am your patient.”
And so I did. My lovely friend Rosie may not have been the most successful of all of us in applied IQ terms, but by God she outdid us all in her emotional intelligence.
I talked to her in a way that felt clinically appropriate and she responded as best she could. That, fundamentally, is how I learned to navigate Harold through the threatening testing process that I was to administer to him the next day.
*Â Â Â *Â Â Â *
Harold placed his hand over mine.
“Tell me what you are doing here with this. This testing. What do we have to do?”
I thought about how to answer this.
“Harold, can you tell me what you have noticed in terms of what you are finding difficult for you?”
“My memory is now very poor. I can't always find the word I want. Sometimes my concentration lapses and I lose my way in a conversation. I offend people I already know, without meaning to. They think I don't know who they are, but I doâI just can't remember them.”
“Why does this worry you, Harold? Maybe you're tired. You spend every day caring for Sarai.”
He looked at me for a moment, with a slight smile. “Sarai loves sharon fruit, and every week I would visit our friend Moshe the grocer in Stamford Hill to buy her some. This has been a familiar route for over thirty years. The last few times I have been to Moshe, I found myself confused about how to get home again.”
“Can you describe what happens?”
“It's a familiar place to me, but I get
überwältigt
. Sorryâhow do you say this?” He rubbed his tired face.
“Ãberwältigt?”
Another pause. He looked up at me questioningly.
I shook my head.
He sounded the word out slowly. “
Ãber-wäl-tigt
. Ah yes. I get overwhelmed. Yes, overwhelmed and feel lost, even though I know I am not. I know to turn right at the synagogue and walk toward the tall elm trees that sit behind our house, but I find myself asking whether this is the synagogue. Are those the elm trees? I even question whether my elm trees are those I see in front of me or perhaps there are others around the corner from another synagogue. In familiar places, and with familiar people, I am feeling lost and overwhelmed.”