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.
It had been a stressful week.
Mum and I stood in the entranceway to the attic of Hazelwood House. My family had lived here since the 1920’s when my grandparents moved from the city and purchased the property. My grandfather died a year after my grandmother passed away; on the same date, similar time and both peacefully in their sleep. So many memories.
Mum and Dad moved to Hazelwood House after my grandfather died. They were now the custodians of so many memories tucked away in boxes.
Are we making the best decision to move Dad into the nursing home?
Mum simply is not coping and can’t look after him anymore.
What does Dad think?
Things were going OK until he had a serious fall near the chicken coup. If we had not visited on the weekend, he could have been lying out in the garden overnight. It was already starting to rain when we found him.
The decision to sell the house had been a difficult decision but it had to be done. Both Mum and Dad were to move into a nursing home. Dad could not remain in the public hospital much longer. Mum could no longer manage by herself at home and her memory was also beginning to deteriorate. It was spring 1997 and the attic was stuffy and warm. Some of the stored items had been here for more than 60 years. It all had to go.
We decided to have Dad transferred back home from the hospital as there was not a vacancy available at the nursing home. Dad was much calmer back home and even though his confusion was pronounced and his memory ‘shot’, he was aware of his surroundings. I also stayed to support and assist Mum and slept in my old bedroom where I found myself surrounded by memories.
The rest of the family would visit regularly and together we sorted at all out. It wasn’t of course straightforward. Emotions were stirred and tears flowed, however, much laughter too, ensued.
So many memories.
We kept finding little piles of things under Dad’s side of the bed; tucked away so they weren’t easily spotted. An old wooden plane, a set of rusty chisels, a few packets of nails and an assortment of tarnished brass door handles. Mum became quite irritated as she gathered them up and returned them to the box in the garden that was to be sent to the local junk shop. It was then that we heard a cacophony of bangs and crashes. Dad had climbed on to the garage roof. He was hurling the sheets ‘willy-nilly’ off the roof into the yard below. He yelled angrily at us to “get away and leave him alone”. All his confusion with the Parkinson’s Disease and associated Dementia meant his usually calm demeanour had been stirred up by all this emotional upheaval. He was so angry and, unlike Mum, did not want to leave.
After his death, I found a pile of bits and pieces in his desk drawer. The set of rusty chisels were wrapped carefully in brown paper and bound with string. Mum had put them in the ‘dispose of’ box all those years before and somehow he had salvaged them by tucking them deep into the drawer. I packed them in my bag and brought them back to Adelaide and placed them carefully in the sideboard drawer in the lounge room. I could not bear to dispose of them—not yet anyway.
Camdale was overflowing with boxes, fabric, suitcases and stacked up furniture covered in dust cloths. My Aunt had lived in this house on and off since the 1960’s. When she moved to Victoria for ten years, she rented the house out but there were certain rooms that were always kept locked and piled high with belongings. Since moving back in the 1980’s, she gradually used fewer and fewer rooms until, no longer able to look after herself and diagnosed with Dementia, she reluctantly moved into a nursing home. Her immediate family were reluctant to take her there, so her personal carer dropped her off under the pretence of going for a short drive for the afternoon. Her memory was not the best but she knew that this was not right and it took her many months to adjust to what was an abrupt change.
Before my Aunt moved into the nursing home, you had to actually manoeuvre your way into the inner sitting room where she lived on the couch surrounded by the necessities of life: a heater, a radio, a TV, a tiny metal-topped meal table, a phone and a myriad of books, magazines, pamphlets and articles piled in precarious fashion. There were also assortments of writing pads, notebooks and pens, pencils, scissors and glue strewn about. On the floor, a rickety pile of scrapbooks contained all manner of newspaper clippings. Sheet music from the 1940’s lay next to the scrapbooks tied with hairy string in neat bundled stacks, ready to be given to some music collector who never showed up. The piano stood in the entrance living room against the wall; more of a shelving unit these days than a musical instrument.
We sifted through every item as we cleared out the rooms. We located a letter from the Scottish poet Robert Burns to some distant relative back to 1776. It was a first draft of one of his poems. I had heard the family murmurings over the years about this elusive letter and there it was, wrapped in brown paper under old books in an abandoned writing desk in the backyard shed. A slice of history; abandoned.
We also found a postcard to my Aunt from Liberace. It suddenly now made sense that her record collection contained all of his recordings and why she had become so distraught when he died. Her stories of meeting up with him in Melbourne when he performed there all those years ago were not some ‘tall tale’ she made up for family gatherings after all. There were also old photo albums and postcards collected from the late 1800’s and early 1900’s. In the now-abandoned bedroom, underneath a piles of old papers and soiled clothing, curled up in a woollen bundle, was my aunt’s childhood doll; its porcelain face still perfect apart from a smudge or two which we wiped off to make its cheeks rosy once more.
When the rooms had been mostly cleared, and the thick dust had been vacuumed, we dragged off the covers from the stereophonic ‘three in one’ and put on Liberace’s greatest hits. The sound was superb and went well with the champagne and nibbles Mum had put together. Sadly my Aunt was not there; she sat quietly in her room at the nursing home and watched the evening news on the large format TV. The family ‘thought it best’ for her not to see her former home, bereft of its contents and those possessions that form the basis of so many memories now dispersed.
Change is the only constant at present.
Place of White Gums
My uncle and aunt had built Pindari (place of White Gums) in the early 1950’s. Together, they had made the bricks for the foundations and sourced the building materials which were scarce after the war. The house was a labour of love and a project they worked together on every day. They were devoted to each other and worked hard to achieve many things in their life. Their marriage was a partnership full of vision and deep mutual love and respect. Whenever we stayed with them over the school holidays, my brother, sister and I always had a wonderful time. Not having children of their own gave them time to work on many projects together and allowed them to indulge us kids totally when we were together. Deep and long lasting memories abide.
Just like life, memories can be fragile too. My uncle hadn’t set foot in the double bedroom since my Aunt (his childhood sweetheart) had died in the early 1990’s. The breast cancer that she had so successfully beaten all those years ago traced its way back into her life, taking it suddenly away. Over ten years of dust had settled in that room, the little knick-knacks with their embroidered doyleys left an intricate pattern of ‘undust’ when we moved them. The lipsticks and perfumes all stood where they had been left when my aunt packed her overnight bag to go to hospital for a simple operation that was to prove more sinister.
My uncle had chosen to use the guest bedroom where we as children used to stay. Deeply fond memories of those school holidays back in the 1950s and 1960s have not faded. The house was much the same as it was then, apart from the layered dust in some of the rooms.
Everything had a place and everything was in its place. Horticulture books were the most prevalent on the bookshelves as both my uncle and aunt were outstanding gardeners. As a child, I would lose myself wandering those little ironstone garden paths that meandered through garden beds, rock pools and tree-glades. The red high heels my aunt gave me to wear made a very satisfying clomp on the stone pathways.
My uncle moved into a nursing home after a bad fall in the garden. He said he liked it there so much that he decided to stay. That is what he said, but I suspect that it was all too confronting as he knew that he was no longer able to maintain his lifestyle in his beloved home. The house had become a burden, a burden he preferred never to speak of again. He entrusted me to oversee the cleaning of his home in preparation for sale. I hadn’t slept in this house since the 1960s and memories came flooding back. I offered to clear the master bedroom, which became something of a ceremony. A sort of private reconnection; a dusting out of an inner sanctum and a cleansing. My aunt was like a second mum to me and her death years before had been traumatic.
In a small box, found in the very top of the wardrobe, was a collection of handmade cards. Each year on the anniversary of their wedding day, which was Valentine’s Day, my uncle had made a card for my aunt expressing his love for her.
Change is universal.
Many Homes in Many Rooms
There are many rooms in the nursing home where I work. They are like bed-sits I suppose. There is a bed and a bedside cabinet, a wardrobe, a kitchenette and an ensuite. There is enough room for a sideboard and a settee or armchair, a TV and a bar fridge but that’s about it. Suddenly, and it usually is suddenly, when someone moves in, they find there is a massive reduction in space compared to what they have been accustomed to and not enough space for their treasured possessions when someone moves in. It’s a shock and takes some getting used to for the newly admitted resident.
In one room there are two large coloured photographs. They look as though a professional photographer took them; there is a sense of design and space. The colour is vivid and slightly surreal. They are of a house in Cape Cod, and were taken around 1970. The house is extensive, elegant and manicured within an inch.
In another room sits a small green wicker chair with a flat wool covered cushion that’s tattered at the edges. The rest of the room is sparse; nothing to remind one of the times before. The chair was something treasured; it was very old and very frail.
Some rooms are so full you swirl as you enter. You do, however, feel a sense of home. Each shelf is dusted and shiny with ornaments and the walls and cabinet tops are adorned with a multitude of family snaps; some hung and some standing. All gazing out into the space of the room. All providing some comfort and a patina of familial repose.
One room has no bed, the occupant cannot lie for too long in a prone position due to chronic physical illness and so he sleeps in his chair. A retired academic, he has his armchair centrally positioned in his room surrounded by bookshelves laden full. There is a special spot where the newspapers sit; many months’ supply piled up in a random tower until the pile tips or is just about to. It becomes less precarious as a minimal disposal occurs. All sorts of discussion take place in this room on topics ranging from Aristotle to the jargon of Postmodernism.
This is not my room!
This is not my home!
Who are all there strange people in my dining room? I want them to go, to go now!
I have to go!
My house! My house!
I want my people! I want my people!
I want to be with the girls—where are the girls?
Where is my mummy?
Where is father? I must go to him now!
My wife is waiting for me—she will have a meal ready and she will want to know where I am!
I have to go and get the washing in before it gets too late!
Why is this door locked? I can’t open it—can you help me?
I must go.
Other rooms lie silent for a night or two; dusted and cleaned. They are empty and quiet. Sometimes they retain a memory that fades a little. You may remember a fragment, of a life once full, but for now this room will sit still and wait.
Within this blog, I hope to stimulate our thoughts and, in turn, our actions with regards to how we may best be able to support residents living with dementia who are residing within aged care settings. Our interactions within this environment have a profound effect upon those around us on a daily basis every time we go to work. Our main aim is to create an environment in which the resident feels secure, comfortable, healthy and happy; a place where their wellbeing is paramount.
Familiar items combined with a succinct life story can act as a helpful trigger to lead staff into conversation with the resident. I recall a situation where Brian became anxious but, by knowing some of his life story, I was able to chat with him about aspects of his past in particular about his childhood pet Bluey the Cocker Spaniel. The memory of Bluey brought a tear to his eye but it also lightened his mood. We also discussed other things about his past growing up in a farming community. This led to further conversations about the photographs in his room and the new shoes in the wardrobe that his brother Jack had recently purchased for him. I mentioned to Brian that when I last spoke with Jack he commented that out of the two he was the better looking. Brian laughed. “He would say that, but of course it’s not true!” The anxiety Brian had experienced was no longer there and we sat together for a while talking about other possessions in his room. Wellbeing is multifaceted and the more information we have about the resident the better. Familiar possessions, memorable stories, friendly support can make all the difference.
Guest blog by Gary Campbell