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The story

The long goodbye

Ed teachers the teachers: Reflections from the project team

Adele - Academic

Looking back on the project, I cannot get past the thought of “Wow, what a ride”. Personally, I have not had the experience of dementia affecting my loved ones. I have been a nurse and a midwife for thirty years and although my professional area of expertise is not dementia, Ed’s journal struck a chord.

Maybe it was because I considered myself somewhat of a novice in the area, I learned so much from his insights as a recipient of care.  I don’t know if Ed or his family and friends understand how valuable his writings will be to future nurses and health professionals.  Nor do I know if any of us fully appreciate how this may affect care provision for other families. I do believe, strongly, that Ed’s Story will resonate with others, just as it has with us, the project team.  I feel privileged to have been entrusted with Ed’s Story; proud of the product we have developed; proud of every one on the team who brought their expertise and gave generously and willingly to the project; and excited that we now get to share it with others.

 

Kellie - Learning Advisor

When first invited to join the collaborative project, I approached Ed’s story as purely an academic task with a tangible outcome: develop a learning resource to help nursing students better link the theory of caring with practice. How wrong I was. Ed’s and Mary’s lived experience became something I deeply cared about; Ed’s complete giving of himself and willingness to share with strangers made me want to develop the best possible learning resource and make certain it was made available to the whole community.

Ensuring that every member of the team had insight to who Ed and Mary are was the beginning of the quality approach to the project; this way, we were letting go our individual objectives and giving ourselves over completely to Ed’s story. I believe this helped progress the project, and carry the team through when unforeseen changes in the makeup of the team could have derailed the project.

Overall, knowing this was an opportunity to learn from the inside out – learn from the lived experience of a carer for a spouse with dementia, will, I believe, deepen students’ insight into the topic and help us better care for the carer.

 

Stephen - Librarian

Ed's Story resonated strongly with me. When we started this project, my Nan had for five years previous a disease that caused the slow deteriation of her body and her ability to control it.  For the first two years my mother was the sole carer for Nan but my mother could no longer physically do the things needed to care for her. So the family made the difficult decision to put Nan in a high care nursing home where my mother still visited Nan 4-5 days a week.  The challenges that Ed had to face mirrored what my mother went through caring for Nan.  Through this project I came to understand better what my mother was going through and the need for other family members and health professionals to care not just for the patient but also the carer.

Refelections

Kel - Family

One of the great challenges of dementia is that long established and long accepted roles and responsibilities within a family are slowly but surely thrown into chaos.

As the debilitating effects of the disease took hold, Mary was unable to carry out domestic duties and fulfill family caring roles that had long been her domain and field of expertise.

The baton fell to Ed—at a relatively late stage in life—to take on roles of chief housekeeper and carer.  Roles which were new and inevitably challenging for him.  But as is the nature of life, marriage and family, these were roles he fulfilled in unforeseen and difficult circumstances with love.

 

Ann - one of the care workers for Mary

Lewy Body’s Dementia may have replaced Mary’s memory with hallucinations and demons, but it could not take away her beautiful personality or her cheeky sense of humour. I first learnt of Mary’s sense of humour when I found out that she had nick names for her usual care workers as a way of remembering their names. I was Pommie Ann, then there was Quiche (Lorraine) and Sorry Mary. We were all so appropriately named. The best part of my visits were “morning tea”. This was when I got to really know Mary and Ed. For as long as she could Mary would take me to her photo wall and she would tell me who was who and talk about the photos. As the Lewy Body’s worsened, the photo wall helped me so many times to calm Mary, re-focus her and trigger good memories for her. The “morning tea” was also chance for Ed to have someone to talk to, not just about how things were with Mary, but about life outside of his 24hrs a day, 7 days a week, 52 weeks a year caring role. Lewy Body’s may have robbed Mary of coherent speech, but laughter and tears over “morning tea” spoke volumes.

 

John - Long time friend
At age 78 in 200, Ed's Ed's primary home care for Mary's Lewy Body dementia steadily became more demanding with broken sleep patterns, physical and mental heartbreak, fatigue, interest lost in previously enjoyable social activities and inertia bordering on depression.

Over nine years Mary had some dreadful falls in occasional Respite Care: a vindication perhaps of Ed's home care for her in familiar surroundings.

At Mary's funeral funeral following her death on Saturday 2/5/2009, Linda from Canberra' Goodwin Home Care reflected:-

"I [Linda] could always leave the home knowing she [Mary] was in good care with her loving family."

To me it seems that the well being of the primary carer too should become a priority when dealing with age related dementia care provided by one loved one, to one so loved.

 

Gordon

I first met Ed when I was conducting research on the history of the 2/9th Australian Infantry Battalion in which Ed served during World War Two. At this time I met Ed’s wife Mary and was aware that she was not well but did not realise just how ill she was and how sick she was to become.

However, by the time my research concluded Ed and I had become friends and fallen into the habit of having lunch together at one or other of the local clubs or coffee shops. We became very relaxed in each other’s company and our conversations shifted from the events of the war to more general conversations about his life, my life and life in general.

As Mary’s condition deteriorated I saw her less and less and I must confess remained largely unaware of just how serious her condition had become or the enormous strain Ed and his family were experiencing. Most days she was in her room when I called or if she was up we spoke only briefly before she excused herself and returned to her room. At lunch Ed rarely, if ever, raised the subject of Mary’s illness and beyond a polite “How is Mary?” nor did I.

Nevertheless, in spite of my failure to fully appreciate the reality of Ed’s situation I like to think that those times when Ed and I went off to have lunch and talk about this, that and nothing at all may have provided him with some valuable respite. Perhaps this time out just talking to a friend who was not part of the family or closely involved with Mary’s illness gave Ed the opportunity, for a short time at least, to just be himself without the overwhelming weight of Mary’s illness bearing down upon him.

Anyway, I hope it did.

 

Kay

I now know that living in another country does not lessen the impact of a loved one with dementia. I live in Australia, Dad lives in New Zealand. He turns 95 in 2016. For the past 10 years he has been “lost” to me in so many ways, and in the last 5 years, our ability to communicate has gradually gone to almost nothing. I think he knows who I am when I telephone but I’m not really sure and although his dementia has been diagnosed as mild, that combined with deafness … well that’s like a brick wall, harder to scale than it would be to swim the Tasman that lies between us. There are complex reasons why the visits have been few, but I’ve tried to make up for that. Do I feel like a bad daughter for not being there? Yeh, quite often. But I just do the best I can. Hopefully he understands, somehow, on some level and still loves me as his daughter.   Kay.