What was he thinking?

Some years ago I worked with a delightful 83year old man, who together with his wife, had spent many years running a pub in a small Australian outback town. During our many meetings, he told me many stories about the pub and the people he served.  His favorite stories related to his time spent coaching the local football team, which included aboriginal men.  These football stories dated back to the 1950s-60s, a time in rural Australia not known for race equality, so there were many interesting twists in his narratives.  Later,  the couple moved to the city to live closer to their children.

This man had been diagnosed with Alzheimer’s disease.  His wife was confined to a wheelchair and needed oxygen therapy 24 hours a day.  They lived in a small apartment, with some help from community services and family. 

His initial admission to the dementia ward followed a call to emergency services by his wife.  The man had jammed her oxygen tubing between a door and its frame, effectively blocking off her supply of oxygen.  She was terrified and believed that he was trying to kill her.  Similarly, a second admission followed the man placing the tubing under the legs of a chair and then sitting on the chair, again resulting in the oxygen flow stopping.  Yet, throughout a very long marriage, there were no reports of violence or abuse between the couple.

As with most people in the early-mid stages of a dementing illness, the implications to his cognitive levels were unclear.  Upon admission to the dementia ward, the man went through a period of increased confusion, being disoriented to both time and place.  This commonly occurs when people with dementia are taken out of their familiar environment.  He was unable to elaborate on what he had been doing with the oxygen tubing, and in fact, couldn’t accept that it had actually happened.  When his wife was brought to the hospital to visit him, the couple sat close, quietly talking.  Sadly following the second hospital admission, she did not feel safe enough to agree with plans to discharge him home to their apartment.  He was subsequently relocated to a dementia specific aged care facility.

What is the point of story?  My point is this:  dementia destroys cognitive functioning, including the ability to plan and to reason.  Many times it is impossible to understand why someone with dementia is behaving in a certain way.  With dementia, a loss of reason equals a loss of responsibility.  As family members and health professionals, we need to remember to blame the disease – and not the person. 

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“And there was this sweet-looking little old lady with her white hair in a bun and everything, the typical grandmother type, and she was swearing her head off. I guess Alzheimer's had brought out her inner sailor.” 
                                                                                                         ― Vivian Vande Velde, Remembering Raquel

Loss of Memory=Loss of Self

As a social worker, I have worked with many older adults (65+) who have been referred to mental health services for problems relating to memory, mood, perception, - all subsequently reducing their ability to independently cope with their everyday lives. In this role I collected and collated their unique personal histories from the individual and from spouses and/or family members.  These life stories are fundamental in both making a diagnosis, and more importantly, in assessing how the person will cope with a chronic illness.  Life stories are based on memories that construct the individual's past, present and future.  Holes in recall make understanding who you are, and who the people around you are, seriously problematic.  Loss of memory equates to loss of self.

Common in people with moderate to severe dementia is the inability to recognize one’s self and one’s closest family members.  Individuals question who it is that they see in the mirror, and can not accept that it is their own reflection.  The reason for this ‘disorientation to self’ is the loss of short-term memories essential to secure the individual’s reality to the present day.  Most often, people with dementia rely on their oldest memories stemming from their own childhood, youth or early adulthood. The aged face in the mirror does not support the individual’s perceived self-identity as say, a 10year old child.   As a consequence, the spouse of the last 40 years cannot be explained (or believed), and adult children become strangers.   Further adding to the distress of all involved, is that the person with dementia will often seek out parents, siblings (in the childhood form) and persons relevant to this former phase of their life.  As with most symptoms of dementia, this does not occur in everyone, and it may not be a constant symptom. Medications may reduce the distress and anxiety, but are unable to correct how the individual perceives themselves and their place in the world.

  

Secondly I would like to relate a conversation that I had with a woman who sustained a head injury after being knocked off her bicycle.  It was our first meeting and she mentioned that she had visited my homeland, Australia.  When I asked her which parts of Australia she had visited, she apologized and told me that she had been in an accident and had no memory of the trip.  Hence all her memories of this holiday, and her life before the accident, have been manufactured from photographs and stories she has been given by family and friends. She has long-term memory loss, and is reliant on others to create her past for her.  Again,  a loss of memory, albeit long-term memory, has made this individual dependent on others to fill the gaps to create a more complete sense of self.

Final point to diminish any lingering doubts re: the relationship between loss of memory and self-identity.  Alcohol.  Many people have experienced anxiety after being unable to recall what they did or where they went, following imbibing too many alcoholic drinks.  This loss of recall may be restricted to period of only a few hours – but it does leave the individual with a gap in their history that can have serious consequences (eg: a pregnancy, car accident, etc); and that leaves the individual at the mercy of others to fill in the details of their life that have been erased from their memory.

Why: Up there for thinking, down there for dancing.

                                           

                                         
I have always enjoyed spending time with old people.  As a child I would seek out and impose myself on the old men and women living in my neighbourhood, especially those living alone.  I loved hearing their stories.  I delighted in watching the old-fashioned approach to life (eg washing clothes in a steel tub with a two rollers to squeeze out the water).  I relished looking at photos from a time I would never know.  But best, that they seemed to enjoy the company of my 10 year old self, always warmly welcoming me and offering time enough to chat over a glass of cold cordial.

Therapists would try and explain my preference for these significantly older companions by pointing out that I rarely saw my grandparents as they lived in different cities and continents; or, that being the eldest of four children I was seeking out some undivided attention; or incorrectly, that I had difficulties relating to my own peers.  Whatever.  Some 35 years later, I recall the widower with his jar of butterscotch and his invented contraption to capture mangoes from the higher branches.   I think back to the canary yellow house and the lovely face of the 75 year old lady in stark white face foundation and ruby red lipstick. I remember fondly, the old couple offering their homemade rock-cakes  - and gems of wisdom like:  “Up there for thinking, down there for dancing”, while tapping a forehead with a pointer-finger.

Older people continued to be a major focus in my life when I graduated as a Social Worker.  For many years my clients have been older adults with dementia or mental health issues like depression, unresolved grief, late onset schizophrenia.  I have worked with these individuals in their homes, hospitals, community health clinics and aged care facilities.   Every person that I have met has come with a different story colored by many years (a minimum of 65 years) of experiences, adventures, difficulties, sadness, joy and challenges.  And every story has had a unique impact on their response to their illness.

This blog is about what I have learnt from these stories and how they have impacted on the process of getting older, especially when faced by the challenges of a dementia. 

                                                 “What is the past but what we choose to remember?” 
                                                                                  Amy Tan, The Bonesetter's Daughter