The Bookcase - a tale of Alzheimer’s

It was blustery and rainy on the Heath when my phone rang: my oldest sister with news that another of our sisters was about to be sectioned.

It started with a suggested diagnosis of early onset Alzheimer’s, distressing enough when your sister is only 6 years older than you, and progresses rapidly to a whole host of symptoms; trouble word finding, extreme forgetfulness, inability to focus on anything properly and a personality shift.

We kept her at home with a caring group of people around her, aware of the importance of stability and continuity. Two years later and she had become unable to stay in that environment. Her behaviour had become more erratic: burning her furniture in the front garden, trying to cut down live light fittings and most distressing of all losing her sense of self. The family realised a care home was the only option for our increasingly distressed and isolated sibling.

It took two attempts to find the right home that offered comfort and care on a one-to-one basis. The first home masqueraded as a dementia care home but in reality was part of a property portfolio for an American group of real estate investors. The second home had gentle staff who genuinely cared and created relationships with the residents. She settled in and after a few weeks of tears when we left she began to take to her two carers.

Then came the phone call, her behaviour had become increasingly erratic and violent and was so out of control she would need to be sectioned in a psychiatric unit of a hospital. Sectioning takes place to enable the medical establishment to assert their authority against an individual who is unable to make rational decisions about their own care.

One Flew Over the Cuckoo’s Nest was my reference point, Jack Nicholson and others subjugated by a terrifying and brutal Nurse Ratched. A sea of Nurse Ratched’s controlling the narrative with drugs, cruelty, e.c. therapy or worse a total lobotomy.

I spent three nights in a state of high anxiety imagining her in the darkest place I may know with a host of other dementia patients, scrabbling to retain a small part of their personality and their dignity.

Dementia is not a disease of the dignified, and people appear to lose most of their identity whilst suffering from it. I was convinced that the sole purpose of sectioning was to strip away all the layers of personality and behaviour and leave the dried-out husk of a loved human being.

I paused at the door of the hospital accompanied by my other sister. I felt terrified and angry that her illness had come to this. I stepped inside feeling increasingly fragile.

The reality of the NHS and the staff could not have been more at odds with my fears. Smiling faces greeted us and introductions were made immediately. The anxiety slipped away almost imperceptibly, and I felt calmer than I had for days.

We had been invited to a meeting with nurses, a psychologist and other NHS staff to try to understand some of my sister’s behaviour and anxieties with certain people and specific situations.

The psychologist (born 1995) was gentle, approachable and demonstrated empathy and understanding that belied her age or experience. She likened memory in Dementia/Alzheimer’s to a bookcase, at the front the most recent memories, the middle shelf the adult years and at the back the childhood years. In dementia the bookcase falls over and the books get jumbled up leading to an unreliable time line or recollection of events. This in turn impacts on their emotions and behaviour. We found the analogy extremely powerful and very helpful in understanding the disease.

The meeting was highly emotive as a lot of the recollections that may have been buried emerged starkly in the fullness of the day. Though distressing it was cathartic and gave the group information to move forward with a comprehensive care plan and more ideas about different reasons for behaviour that my sister repeatedly displayed.

When I left having seen my sister, calmer, happier and seemingly more at peace, I felt her outward emotions wash over me.

The NHS was doing a remarkable job, they had had taken her from a destructive and very miserable place to somewhere more akin to her normal self. In time now that the medication and care plan is working she will be moved back to another care home. Everybody had her best interests at the core of their practice and she now seems to have a quality of life that she deserves and needs.

Thankfully no Nurse Ratched in sight.