THE American author Amy Bloom, usually a writer of fiction, recently published a memoir of the last months of her husband’s life. Both in their 60s and settled in life with grown-up children, they were looking forward to retirement where they could indulge their various hobbies and unfulfilled dreams. It was around this time that Amy began to notice Brian suddenly struggling with simple things. If Brian’s book club sent out too many emails or suggested meeting half an hour earlier than usual, it would send him into a fit of frustrated anger. When Amy looked at the emails, there was nothing frustrating about them — just a request to alter the usual routine. She was befuddled — what was happening to her usually placid husband?
Things began to get a bit clearer with time. When Brian began to forget things like how to use the printer — not unable to operate the thing but actually not being able to figure out that this was a machine that could print a document — she decided to make an appointment with the neurologist. It was not an easy decision. Brian was a man of certitude, a little stubborn in his 60s. Was it just age? Amy wondered before trying to convince him to undergo a neurological exam. An athlete in his younger years, Brian did not have anything physically wrong with him, so why drag him to another doctor and to more tests? The days leading up to their appointment, however, were filled with more instances of Brian’s forgetfulness. After all the MRIs and CT scans were done, there was a clear answer: Brian had early onset of Alzheimer’s disease. He was losing his memory, and he was only in his 60s. Both husband and wife cried when they heard the news delivered with a finality that only doctors can produce.
People everywhere, including in Pakistan, are living longer and longer thanks to improvements in healthcare. While only some percentage will be diagnosed with actual Alzheimer’s disease, let alone the early onset version of the illness, many others will be diagnosed with some form of dementia and memory loss. This means that they will require a sort of care that is different and more laborious than usual elder care. Those who take care of such a relative know that sufferers may forget key facts about their lives — such as the death of a parent or spouse. When they are told that they are no more, the patients experience loss and anguish just as if they are told the news the very first time.
Repeated instances of this can be exhausting for everyone. A better option that caregivers eventually learn is to say that the person in question is not dead, but visiting someone or has gone to the market. This is necessary because those suffering from cognitive decline and memory loss can sometimes not remember what took place 10 minutes ago or whether they had breakfast — the events of the far away past in their youth emerge as if they took place that very day.
The focus should be on long-term care for those who are losing their memory, being patient with them, and not allowing their dignity to be hurt.
The insane pressure of city life and the punishing pressure of price increases that threaten to throw many millions of middle-class families into poverty also mean that the people who are caregivers at home (women) have to enter the workforce. This leaves the problem of aging relatives who often have to be left alone — something that can be fatal. Again and again, Alzheimer’s patients walk out of their home and wander off into dark city streets. The terrified family has to then alert all the neighbours and try to find their fathers or mothers. If the family members act fast, they may be found; but even if they are found, their dignity is gone forever. For they are not the retired judge or the doctor or the matriarch, they are invalids to be pitied.
There is a word for this. A diagnosis of Alzheimer’s, particularly early onset, means that patients and their families experience ‘the long goodbye’. The physical person is healthy and will be around for years, even more than a decade. Their mind and memories will gradually empty out until years and years later when they forget how to swallow and can no longer eat. By this time, they are completely unrecognisable as the people that they used to be.
In Amy Bloom’s case, long before Brian could forget who he was and while he could still pass psychiatric evaluations to attest he was of sound mind, the couple went to an assisted suicide facility in Switzerland, so that Brian would not become someone he did not recognise. Some states in the US permit assisted death, but the requirements include a terminal diagnosis and a prognosis of death in the next six months. The couple might have thought that this was the only option for Brian, but assisted suicide is a very controversial practice, even in countries where it is legal. Proponents may say that it is a humane way of ending years of pain, but it is also perceived as subverting medical ethics and taking a life deliberately.
Meanwhile, the focus should be on care for those who are losing their memory, being patient with them, and not allowing their dignity to be hurt. In countries like Pakistan, there is a need for memory care centres where the staff tasked with looking after those suffering from Alzheimer’s adopt such an approach. There is also an urgent need to educate caregivers (through a memory care certification perhaps) so that they know how memory loss works and how to help and occupy someone who has been afflicted. Failing to ensure this means that we would be leaving our loved ones, who will soon no longer be able to speak for themselves – open to abuse and harm. It is crucial to underscore the fact that Alzheimer’s patients have lost their memory, but not their humanity.
The writer is an attorney teaching constitutional law and political philosophy.
Published in Dawn, June 22nd, 2022