After the diagnosis

A family prepares for the future

After years of declining health, Roy’s Alzheimer’s diagnosis still came as a blow to the family.  His wife Clodagh, son and daughter rallied around to provide the support and attention he needed.

In the years leading up to the diagnosis, Roy and Clodagh, with the support of their GP, had the presence of mind to make sure his affairs were in order, including his will and guardianship arrangements. They also started the difficult, but important conversation about what Roy would want regarding his future health care.

“We discussed end of life situations when he was coherent and aware of his condition and its possible outcome. We both agreed that he may have to go into nursing home, which eventually was the case. Roy had expressed his wish not to have his life prolonged if he was unwell,” explains Clodagh

Clodagh cites peace of mind as one of the most valuable benefits of starting the advance care planning process early and believes it offered a lot of comfort for Roy, for herself and her children.

“Two of our children live in Western Australia so they relied on me to offer the best care for their father. One son lives in Hobart so he was with me all the way,” says Clodagh.

Eventually the time came where Roy needed to live in a nursing home. “When Roy went into full time care, with the help of Roy’s GP, the director of the nursing home and the doctor in charge of geriatric care at the Royal Hobart Hospital, we outlined a plan which proved very helpful when he was nearing the end of his life, explains Clodagh.

Both the nursing home and Roy’s GP were given copies of Roy’s advanced care directive which made clear his preference to avoid life-prolonging care.

“Two of our children live in Western Australia so they relied on me to offer the best care for their father. One son lives in Hobart so he was with me all the way,”

In time, Roy’s health deteriorated and it was obvious that Roy was very unwell. Their GP offered for Roy to be hospitalised and given antibiotic treatment for a urinary tract infection, but ultimately it was agreed that Roy’s preferences, as outlined in his advance care directive, would be respected. Roy passed away peacefully in the nursing home. He was not given life-prolonging treatment but he received comfort care, ensuring his final days were pain free.

“I felt hugely relieved that Roy and I had a meaningful end-of-life discussion, eight years before he died. I knew that I was making the right decision not to prolong his life. It was easier for the GP too. Making this decision between us, and then later with the GP, made it so much easier for me to deal with Roy’s end of his life, and all that goes with it after death,” says Clodagh.  

Advance care planning requirements differ across Australia. Be sure to refer to the advance care planning forms and documentation relevant to your state or territory.