Pick a Memory

I saw this question last week - and I have been thinking about it ever since.  If I could only keep one memory - what would I choose? Would it be the memory of a person, or perhaps of a specific experience, or a smell, or just a feeling?   One week along - and I am still unable to even make the shortlist of possibilities.
The phasing out of photo albums, at least in the hard-covered book format,  is something that I think will be a great loss of joy in the future.  The experience of sitting with a grandparent, looking and talking about photos, has always provided a valuable source of both family connection and history for many generations.  Photos trigger memories.  Sometimes photos help to create memories - especially in children who want to repeatedly hear a story related to a photo showing themselves as a baby or toddler, or a photo from their parent's wedding.  For a child, a memory of a time not remembered is created by the photo, the story and their own imagination.
For a long time photo albums and photo boxes have been recommended as communication tools in working with people with dementia.  Photos provide the opportunity for the person with dementia to be confident in telling some of their own story to the people around them. Family members find it easier to connect when their is a visual image of a shared experience connecting them to the person.   Quietly reminiscing over photos is a skill and a source of joy that continues long into a dementing illness.

Searching

Being alone.  It is difficult to image what waking to quietness is like.  I am surrounded by noisy kids, demanding pets, music machines, friendly neighbors - and all my appliances seem to have their own loud language.  My initial thought about waking alone, everyday, is that it must be peaceful... yet the fabric of our lives is held together by the people in it.  We rely on other people to give the feedback needed to maintain adequate levels of self-identity.  Looking in the mirror is not enough to tell us who we are.
With dementia, being alone is more common.  The halls of old people homes are busy with residents pacing and searching.  Sometimes these individuals are able to tell staff what they are looking for, but most times, the search item doesn't exist.  Foraging is one of the behaviors related to dementia.  People waking in the night to going through drawers and cupboards - searching.  It is a disturbing behavior for the person (the anxiety of looking for something that can't be found), and for family members or facility staff.
Imagine losing someone or something, but being unable to remember that the person or item, has been permanently removed.  Imagine waking everyday with the strong need to find the person or the thing. Imagine how confusing it would be to be continually told that you are wrong, and that the person has died or the thing has been long ago disposed of. I suggest that this would incur feelings of anger, disbelief, sadness - and loneliness.  This is what happens with someone with dementia.

Article in today's Dutch newspaper about people feeling lonely:
http://www.dutchnews.nl/news/archives/2013/09/40_of_the_dutch_feel_lonely.php

Being Forgotten

My grandmother moved into supported accommodation in her mid 80s.  She had Alzheimers Disease and needed help to shower, cook, clean, be safe.  She had four sons, including my own father who had moved continent as a young adult.  The remaining three sons designed a roster of visitors, so that my grandmother had company during the week and extra help not provided by paid staff.

As a child, I loved receiving postcards, birthday cards and Christmas parcels from my grandmother.  It was wonderful to be thought about by my distant ‘Oma’,  and I strived to write to her as often as I received her mail.  I felt close to her, and treasured the infrequent times we were actually together.  Relatives told me that I looked and acted like her.  Their comments delighted me.

I was 25, the last time I saw her.  I visited her with my uncle and aunt.  My grandmother warmly welcomed me into her home, but it was soon clear that she had forgotten who I was.  My uncle attempted to remind her many times during my visit, yet she was unable to recall my identity.  I sat with her, drinking Advocaat (her favorite) , and going through her box of old photos.  Many times she came across photos of me as a child, quickly and correctly pointing me out in the photograph.  She told and retold stories from her own childhood.  Whenever she looked out the window, she called out to my father anticipating a visit from him.  Although he had not visited in the last decade, he remained heavily in her thoughts.  Before we left, my uncle handed me a shoebox full of postcards and birthday cards, written but not sent, to my siblings and I.  My grandmother had prepared herself for the time her memory would fail her. Unfortunately her ability to plan and complete actions at the right time, like taking cards to the postbox, had diminished with her memory.

I contacted my father after this visit.  He subsequently phoned his mother, who told him that a lovely woman had come to visit.  She couldn’t recall who it was.

Many years have passed since this visit took place.  I still feel some sadness at losing my grandmother to dementia.  My experience is common in spouses and family members of people with dementia.  Health professionals often identify individuals who are in a state of grieving – while their relative is still alive.  It is an extremely difficult phase.  Family members are tired from the practical tasks involved in caring for their relative.  They are frustrated and annoyed at having to repeat answers and at listening to repeated questions.  But perhaps the heaviest blow is that after a lifetime of shared struggles, joys and challenges, they are not constantly recognized by their loved one.  The sad and lengthy experience of loving and caring for someone with dementia, is an experience that family members endure alone.

Grandmother-grandchild relationships are simple.  Grandmas are short on criticism and long on love.                                                                                               ~Author Unknown

Losing Touch

Here is an uncomfortable tale.  An elderly woman was admitted from an aged care facility to the dementia unit due to ‘challenging’ (read: problematic) behaviors.  Specifically, the lady was agitated; intrusive (this usually means that the person goes into other residents rooms and touches their things, or tries frequently to enter the staff office); and was regularly seen masturbating in the public spaces.  Her dementia had progressed to the stage where she made unintelligible sounds and was unable to communicate via words.  She liked to approach staff and other residents, offering to shake hands, pulling her hand up out of her skirt waistband and underwear.  Many times a day she wore a lovely smile on her face, but this was occasionally replaced by distress and anxiety as she attempted to understand her environment.  No-one wanted to touch her. 

A second undesirable situation in dementia care units, occasionally reported by family and staff is that of, physical relationships between residents.  It is very distressing for long-term spouses to not be recognized by their partner with dementia.  More so, seeing your spouse sitting holding hands with a fellow resident. Yet these residents are generally calmer and happier within the care facility, after establishing these new relationships that generally involve some form of touch, like hand-holding and hugging.

My last story relates a less common dementia scenario, due to the fact that early onset dementia (in people under 65) occurs with much lower frequency than other dementias.  A 25year old woman is upset that her father wants her mother (aged 52) placed into an aged care facility so that he can pursue his new relationship with an old family friend.  Her father has been the primary caregiver for his wife for two years, having given up both his full-time job and most of his hobbies.  The husband indicates that he does not want to continue in this role.  He actively talks about his own need for love and support, no longer able from his wife due to her dementia.

Dementia robs individuals of comfort and security that comes from being touched, hugged, stroked and loved.  Often people with dementia are no longer able to initiate the physical connections that are expected by spouses and family members.  Often family members think that the lack of response from the person, means that they do not want to be touched.  And sometimes, it is the intact memory of a spouse and recollections of the past physical relationship with their now cognitively compromised partner, that reduces the desire to touch and hold the person.

Touch is a basic human need.  There are numerous research papers discussing the necessity of touch in developing the bond between mother and newborn child. The same need continues in adults.    Daniel Keltner's research found that touch is fundamental to human bonding, communication and health.  Further,  touch signifies trust, security and has the benefit of soothing the individual. How apt for people filled with anxiety caused by not being confident in their own life experiences and environment.  Touch is the  means to communicating love and support with someone who is no long able to follow and partake in a stimulating conversation. Touch tells them that they are still a valuable part of our lives.

                                                    “Touch has a memory" ― John Keats

Loss of Memory = Loss of Direction

Is it happy hour yet?  Can I have a scotch and soda?  Every afternoon during his 4week stay in the dementia unit, this gracious gentleman would stop at the nurses desk, believing it to be a hotel bar, and ask for a drink.  The nurses stood or sat behind a high counter that separated the staff from the patients and the public.  Hospital files and stationary, and not bottles of alcohol, were always visible - but the height of the bar, and the separation of the staff, were similar enough to confuse this gentleman into believing he was somewhere other than a hospital.

This same man managed to escape from the dementia unit, and found his way back to his apartment in the suburbs of Sydney.  He did this without a map, money, or a bus ticket.  The distance between the hospital and apartment was approximately 15kms, and it was assumed that he did travel by bus for some of this journey.  I had regularly witnessed this man getting lost while looking for the bathroom on the unit.  Successfully negotiating his escape and way home from the hospital is amazing, and for me, one of the mysteries of a mind befuddled by dementia.

Getting lost is common in people with dementia.  This symptom starts early and continues throughout the disease until it is constrained by a reduction in the individual’s mobility.  Disorientation to place occurs when the person with dementia is unable to correctly recognize familiar landmarks that have previously oriented them to where they are and where they are going.  

For the past thirty years architects, interior designers and dementia specialists have collaborated to design "dementia friendly" aged care facilities.  Most of the initial work sought to improve visual queues thereby orientating people to where they needed to go.  For example, making the doors of bathrooms obvious by contrasting the color of the door and placing a photo of a toilet on the door.  Similarly deterring entry to restricted areas by camouflaging doors to match the walls.   By controlling the environment via lighting, floor coverings, furnishings including photos, signs, images - we can enhance the independence of residents who are unable to regularly remember where the bathroom is, where their bedroom is, where the common social areas are.  

Finally, imagine finding yourself in a new city where you understand neither the language nor the culture.  How do you find a public bathroom?  You look for the clues and associations related to the location of public bathrooms inherently learned from you own life experiences.  Conventional toilet images on signs; buildings likely to have public access to bathrooms; queues of people obviously not shopping …  without being able to ask directly, you look for recognizable visual queues.  This is the same principle in helping people with dementia orientate to their surroundings:  make it simple, obvious and familiar.

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. 

                                                             --------------------------

“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