A positive and unique care experience at Carolyn’s nursing home was what made saying goodbye each day just that bit easier for her partner, Janet.
When Janet and Carolyn met in 1991 they were young, fit and working hard in the Royal Australian Air force. Janet as a Sergeant (Dental Practice Manager), and Carolyn, as a Flight Sergeant (Admin Instructor)
They were both well-ingrained in the military lifestyle, later deploying to England, New Zealand and the Middle East; Carolyn being the Air Force planner for the initial deployment in 1999.
But beyond their passion for the military, they shared a like of good food, good wine and lots of exercise; mostly they shared a love for each other. They had spent more than 21 years together. “We worked together, and lived together. It is probably safe to say that we knew each other better than we knew ourselves,” Janet said.
Janet recalls the changes in Carolyn’s behaviour, which prompted her to seek assistance from their local GP. “Carolyn was always a very humorous, intelligent, very sharp and easy going person. It was when I started noticing Carolyn repeating stories and questions, forgetting to put on shoes before leaving the house to go to church as well as becoming easily frustrated, that I knew something wasn’t right. These traits were not ones of her vibrant personality,” Janet said.
After several GP and health specialist visits, Carolyn was eventually diagnosed with fronto-temporal dementia on 17 March 2010. “Even though it was a relief to finally have some closure as to why Carolyn’s behaviour had changed, by the time we received the diagnosis Carolyn’s dementia had already progressed to a point where she needed full-time care in a care facility, eventually being admitted on 17May 2010,” Janet said.
Carers and families of people with dementia often have great difficulty making the decision to place their loved one in a care facility. “I knew Carolyn dreaded going into a care facility, but it got the point where there was no other option for her care. The first few times I visited Carolyn, the nursing staff said they were having difficulty encouraging Carolyn to sleep or admit that she was in pain. The nursing staff said they sensed that she could be in pain, but when they asked Carolyn if she was feeling uncomfortable, Carolyn would always respond, ‘not at all’. After hearing this, Janet sat down with the nursing staff and explained to them that Carolyn had worked in the military for more than 20 years; the military culture was well-fixed in her brain. “I explained to them as Carolyn’s rank was a Warrant Officer – the most senior non-commissioned – that in order to better communicate with her, they would have to revert back to speaking to her as though she was a Warrant Officer in the military,” Janet said.
The nursing staff took Janet’s advice and started almost ‘ordering’ Carolyn to do things, instead of asking her. For instance, they told Carolyn that breakfast was 08:00hrs in the mess – rather than the dining room. To encourage Carolyn to take an afternoon nap Janet organised a pretend Medical Restriction certificate – which was more or less a document to certify that someone in the military has been given permission to have work restrictions – in this case, sleep between certain hours.
“This was the only way that the nurses could get Carolyn to sleep and I’m grateful that they were willing to incorporate Carolyn’s unique care requirements. In order to get Carolyn to be honest about how she was feeling, they would often walk around Carolyn’s room complaining of some sort of pain they were feeling; Carolyn would immediately say: ‘I am in heaps of pain but no one will listen’ – moments after saying she was A, OK,” Janet said.
Janet also told of the times that the nursing staff would involve Carolyn in organising the care facilities’ plans for ANZAC Day and Remembrance Day, because they knew she had a great interest in these important days. “Seeing Carolyn involved and being her usual articulate self was such a special moment for me to witness. I’m so thankful that they gave her the opportunity to be involved. You could see she loved every minute of it,” Janet said.
All of these small changes made a huge difference to the care Carolyn received, and certainly put Janet at ease each time she had to leave the facility.
“Even though Carolyn has now passed, I will be forever grateful to the nursing staff for the wonderful and thoughtful care they gave to Carolyn. It truly was a remarkable effort, and to think that it was only slight changes that made a huge difference. It does go to show that small actions do count,” Janet said.
Thank you Janet for your beautiful story. My Dad has been put in a nursing home in the past few weeks even though most of our family didn't want him to be there. My mother and brother(power of attorney, against our will have placed him there and it has been so sad for him and us. Your story is so beautiful and I am sorry you lost your soul partner. Thank you again for your story… Much love….
Thankfully the experience of dementia seems to transcend age, gender & sexuality issues for those working in this area. Glad to hear your experience was such a positive one. It should be like this for all people with dementia.