Within this blog, I hope to stimulate our thoughts and, in turn, our actions with regards to the ways we may best be able to support residents living with dementia who are living within environments which we contribute to on a daily basis every time we go to work.
Any names mentioned in this blog have been changed to protect the identity of individuals concerned.
The relevance of the environment cannot be underestimated, especially when it comes to how immediate surroundings can affect the wellbeing of individuals living with dementia. The environment can have either a significantly positive or negative effect.
Noise levels, odours, light, views out, freedom of movement, fresh air, furniture, decoration, colour, music, conversation all combine to create an atmosphere within an environment.
How does your work environment feel today?
How was it yesterday—does it change?
How can you as an individual make a difference and make the situation calmer?
How engaged are you—and how well do you communicate?
How do you react to situations?
Do you know how best to support someone?
Our response to others is vital. It has a flow-on effect.
Considering The Space
This blog contains a series of linked fragments in the form of seven short stories.
The theme to these stories lies in the significance of the everyday; of every day and the day-to-day. The seemingly unimportant events that make up our daily lives. Casual observations on the structure of our daily lives can uncover something more profound and enriching. The environment that surrounds us encompasses, enhances and enriches life’s meaning. Objects immersed with feeling become enlivened and contain sparks that rekindle a myriad of memories. Likewise, these vignettes that appear as ‘ordinary events of no consequence’ are, on the contrary, quite substantial and gives us our sense of meaning.
A recent event took place in the Memory Support Unit. It’s afternoon shift. There are 18 residents in the unit. There are four staff for the majority of the shift. They are regular staff and they know the residents well. Most of the residents are in the lounge area. It’s around 3:30 in the afternoon. The TV is off and quiet music is playing instead. The curtains are open and the street is in full view through the garden. The afternoon sunlight is streaming into the courtyard. The atmosphere is peaceful. There are several groups of residents interacting with different staff in the lounge area. One staff member is attending to the residents who are in their rooms when required.
One of the other staff members has brought in a washing basket filled with socks; brightly coloured and patterned. Some of the residents are interested in sorting out the socks, some might say a fairly mundane task. Eventually, several other residents join in and there is much discussion about the varied patterns. Socks are displayed flat on the table. Others are folded in pairs. Others are slid onto hands and an impromptu puppet show ensues with one resident creating butterfly-like movements with his sock-covered hands. He begins to dance and move as if in flight. Staff are an enthusiastic audience. Socks find their way into a myriad of places for most of the evening. Socks in pockets. Socks in drawers. Socks under pillows. Socks on the feet of chairs.
The story above shows that ordinary interactions within our domestic spaces can be imbued with relevance and significant poignancy. Away from that domestic environment, these bits and pieces will, for some of us, retain a link back to that domestic space. This recognition will have varying degrees of relevance to each individual with the possibility of containing elements of memory and personal history. With recognition, no matter how slight, there may also be calm, clarity and a sense of ease.
Familiar objects can trigger memories of past events.
A special dinner set. An old water jug. A painting. A set of cake forks. A photo album. There are a myriad of items that speak in whispers if we care to listen.
The objects within an environment help to create an atmosphere.
The domestic environment provides shelter and security – two basic human needs. Having somewhere to live sustains us, provides us with a comforting environ in which to eat and sleep. A place where we are replenished and sustained. A place to return to and call ‘home’. We locate ourselves within this roofed enclosure. Its meaning to us, and ours to it, are deeply linked.
The different rooms within a household all carry their own individual atmospheres and, for the sake of the stories here within, I have maintained a hypothetical approach in that I have ascertained certain memories around certain rooms. I would also ask you to conjure up your childhood home; keeping it in your ‘mind’s eye’ as you read these stories.
I have structured these stories around the idea of a suburban house on a quarter acre block. The stories all link back to the house or elements of what it once was; its memory fresh and clear, or alternately, fragmented and faded. The idea of a house becomes a structural device from which to explore how important that notion of ‘home’ is to us, to our fellow humans and, in particular, to those we care for who are no longer in their homes but living nevertheless in the nursing ‘home’ environment with all the varying attempts to create a ‘homelike’ atmosphere. In a profound way, we as carers are all part of that new home and we are like an extension of family. The house of many rooms in a nursing home setting diminishes in some aspects and becomes more diverse in others. Something that was once a private abode becomes shared and we share it together with the residents, and their families, who now call this space ‘home’.
So we arrive at the garden gate. It is ajar and the garden looks fresh after a recent spring shower. Dense white blooms of the climbing rose cluster over the side fence.
There are Mum’s gardening gloves on the verandah and an old galvanised iron watering can near to the tap. Remember that watering can? We bought it for Mum back in the 1970’s for her birthday along with ten packets of vegetable and flower seeds.
A garden fork sits upright in a pot that holds the sprawling jade tree to the left of the front door. Mum loved that tree. She said it was supposed to bring you good luck. It was a gift from a neighbour for Mum’s 50th birthday. It was a tiny cutting and now sits majestically in the large clay pot on the porch; high as the front door itself.
Entering the house, we head along the hallway. It is furnished with two long narrow rugs. Coat hooks along the wall are laden with dusty jackets. The wallpaper, now faded, looks dull and the floorboards creak as we walk, as if to herald our entry.
The first room we enter is the bedroom. A place to dream and to return to memories of things past and passed by. This is a place of intimacy; of midnight chats and quiet thoughts.
Thoughts are free to drift from place to place; mingling with past and present, playing with memory and toying with nostalgia. It is furnished with a neatly made bed, bedside cabinets randomly piled with books and a wardrobe with a door partly opened. We can see shoes lined up and clothing sorted in groups of colour. There is a dressing table adorned with personal items, jewellery, several combs and a cutglass lidded jar.
The next room we enter is the lounge room. No longer the parlour of yesteryear where the recently deceased were laid out before their funeral, this is now a room that affirms life. A place for entertaining, reading, watching TV and listening to music. It is the heart and soul of the house. A large vase of chrysanthemums sits on top of the heater. Assortments of family photos adorn the walls and sit on the mantelpiece and buffet. A myriad of neatly stacked photo albums are kept in the partially opened sideboard. The lounge and armchairs are placed in a semi-circle around the TV. Occasional tables are placed close by. A bookshelf with glass doors is by the window. There is a dining setting at the other end of the room. The table has six chairs and is set with a large fruit bowl and candles at either end. The china cabinet sits alongside the table on the back wall. A silver tray sits on the dresser with a decanter of brandy and a couple of glasses.
Through a decorative archway we enter the kitchen. A room of industry, chaos, creativity and comfort. It is furnished with shelves, cluttered cupboards and drawers, a stove, a sink, a small table and chairs. It is a place of conviviality, of preparation, of congregation and chatter. A place of tea and coffee, of glasses of milk and plates of biscuits, of frantic mornings and early evening muddle. The table has a lace cloth on it today and the chairs all have narrow square cushions in place. The vase of nasturtiums looks beautiful. Do you remember that vase? Mum won it at an RSL raffle.
Further down the hallway, we enter the bathroom. A room you frequent every day. A private viewing space, where you can groom, sparkle your teeth and clean your ears. It is furnished with a pink bath and basin. There is a shower over the bath and a full length mirror hangs on the back wall. The pink toilet has a fluffy tulle seat cover with matching Barbie doll toilet roll cover. Do you recall mum making lots of those Barbie doll toilet roll covers for the local hospital auxiliary?
There is a sunroom at the rear of the house which has a tiny laundry to the side. It is furnished with an armchair and day bed and captures the afternoon sun. It is also furnished with occasional tables and a magazine rack. It is a room that creates a bit of extra space for relaxing, dozing and having a quiet read. It is here that we set up the computer where it still sits fair and square in the middle of the desk and is casually covered with a tablecloth of a vivid floral pattern.
From here we enter the backyard. There is a garden shed at the far end and a veggie patch down the side which is now overgrown with a mass of nasturtiums. There is a central concrete path cracked in places that leads to a Hills Hoist. An assortment of fruit trees line the opposite edge of the backyard and a small overgrown lawn borders either side of the path.
Change is inevitable.
I Feel Disjointed
We are leaving the local GP’s surgery both shell-shocked and relieved. An altogether odd feeling! Shocked to learn of a diagnosis of dementia but relieved to know where we stand and to have gained some clarity on what was becoming a very muddled, unknown and stressful situation. The GP has been the family doctor for decades.
A diagnosis of dementia demands adjustments.
How to negotiate?
How best do we show support?
Who do we include in the discussion?
Do we have to sell the family home?
What to keep and what to discard?
What do you recall and what do you not?
Who makes the decisions?
How do I make sense of at all?
Who will help and reassure?
Who will show the dignity, respect and love?
Where do we go to from here?
So many questions. I have so many questions.
At times, we are pivoted into strange and unexpected places. This is when we need to stop and investigate options. To include and not to isolate.
Perhaps we can draw on the everyday of the day-to-day. What seems a drudge can be rich in its ordinariness or its extraordinariness?
Understanding the everyday depends how you interpret, collate and investigate it. All we really have is ‘in the moment’. Each day will present itself differently and two expressions come immediately to mind, ‘one day at a time’ and ‘each day as it comes’. Life seems fragmented. Fragments make up the whole and when life becomes diminished, it is often the fragments that are all we have left. A recollection of childhood memories, a reminiscence of some past gathering of the clan, a lingering scent or shifting sound of something faintly familiar.
How does it relate to the now?
The domestic locale is part of this landscape of support.
Down the hallway we run—away from what we can no longer remember.
Hold my hand and smile. The world may lose its sense and time may change me.
The Embroidered Brush
Are we making the right decision to move Mum into the nursing home?
What does she think?
Is this the right time to make a move?
If you had not called by last night and noticed the saucepan burnt dry on the stove, the tea towel folded near to the flame, there could have been a fire. She was not aware. She was watching TV in the other room.
We will have to go through everything in the house and clear it out. Do we ask her? Include her?
I find an old book called Dreams and their Interpretations. Mum and I used to have long conversations over breakfast about the dreams we’d each had the night before. About what they might mean and how they may make more sense of our waking hours. Behind the book lies the alligator covered case with Mum’s rimless spectacles inside. As I remove them from the case, I recall that they were her first pair. Next to this is a hairbrush; heavy, decorated with embroidered flowers on its back. It had a faint scent of sweetness and remnants of hair lay tangled within its bristles. There are a couple of blurry photographs crumpled and torn but I could make out an image of Mum and Dad sitting under a tree. Wooden cotton reels by the dozen and old dice of different sizes all lay scattered in another drawer.
How do we fit a lifetime into one small room?
How do we recall the events of a life?
How do we now make sense of what each day presents?
Who are all these strangers?
Sit with me until I fall to sleep. Keep watch and keep me safe.
Guest blog by Gary Campbell