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"My mother's and my experience with dementia in aged care and then palliating"

About: POWH Community Palliative Care Service (Prince of Wales Hospital)

(as a relative),

My mother was fortunate to receive good care for the seven years she was in an aged care facility with Alzheimer’s disease. I was her Enduring Guardian and she did an end-of-life plan with me in July 2017 when, although she had short term memory loss, she had full understanding of what we were doing and asked that her life not be extended at all costs. She wanted to live only while she had good quality of life. As an observer and her close companion through her entire illness, I believe she had quality of life primarily in the first 2 ½ years of her illness. From the beginning of 2020 with COVID outbreaks and lockdowns, she suffered immensely. All group activities were ceased and she was confined to her room. Unable to comprehend what was happening, she became more confused, agitated and was often distressed and crying. COVID imposed a profound level of suffering intermittently over many years.

Apart from COVID she was fortunately able to engage in art, music, drama and physical therapy giving her some meaning and joy some of the time even though her symptoms were severe and compounded by frequent severe UTIs.

She lost mobility approximately three months before her death and was in a wheelchair. She also became physically ill. During an entire month, she was vomiting repeatedly, having falls as well as several days of not being able to leave her bed, refusing all medication and refusing care and toileting. She was also extremely distressed by the standup lifter and the full body hoist which were used to take her to the toilet. In hindsight I believe that the palliative care team should have been involved throughout this time. They did visit her that month but it was on a day on which she was well, eating a little and was an exception rather than an indication of her true condition. So sadly, palliative care was only introduced on following month approximately 5 weeks after she had become quite ill. I did not know and was not informed that the palliative care team is introduced not just for the very final stages of life but in order to produce more comfort when there is suffering. Instead, the initial month and the first part of the following month were a daily struggle I did alone with her, watching her either refuse to eat, or taking food and then spitting it out or swallowing it and then vomiting. This was avoidable if I had known that there were other options and she barely ate solids throughout this second month.

The palliative care team from Prince of Wales took over her care and they did an extremely good job. I started to write down everything she said for the benefit of understanding her experience as best I could and also as a memory for myself. She made comments like ‘My body is all twisted. I’m dead. They buried me. I think I’m dead.’ And a comment she made to one of the therapists was: ‘The other (said her name) died on Tuesday and I went to her funeral’! This may be the dementia talking but also a clear indication that she knew she was close to death and perhaps preparing herself and me. For me it was clearly a sign that she was not feeling good or well. Between the first few days as she began palliative care, medications were mostly PRN and therefore not given. This is not to blame anybody it is just clear to me that with powerful and essential medications for pain and anxiety, they need to be charted regularly as there is no one observing at all times how the patient is actually doing. I wrote a detailed email to the palliative care team and I had received a comprehensive response and my mother was visited the same day and her medication regimen revised so she was much more comfortable, settled and not suffering. My congratulations to them for their prompt response and competence in handling my mother’s condition so well.

Another difficulty I discovered was that while medication was charted 4 hourly, initially this was not being adhered to closely enough. I observed that it could be long as 5 hours or more between doses. As soon as I drew attention to this, it was corrected immediately and staff were diligent about giving medication on time.

I became aware around a week later that nighttime PRN doses were not being given, leaving my mother without any medication between 8:00 PM and 8:00 AM at a time when she clearly needed them. She was receiving all her medications between 8:00 AM and 8:00 PM keeping her comfortable only during the day however with not a lot of people around at night, I believe she received inadequate medicating overnight between for 4 weeks. As soon as I drew this to the attention of the palliative care team, they once again implemented regular doses at night and I believe the last 10 days of my mother’s life were her most comfortable.

The palliative care team were extremely competent, professional, and responsive to my requests and very kind and supportive towards me so my experience with them was positive. I realize that palliating treatment is complex and delicate and therefore understand that it took days to get the regularity and the dosing correct.

I slept in my mother’s room with her for several nights in the last 10 days of her life as well as being there for prolonged periods during the day. I was therefore able to see first-hand the high quality of care she was receiving. I am so impressed by the immense care, gentleness, patience, and availability of the wonderful RN’s and AIN’s who played such a critical role in her final months. They also showed me great support and kindness.

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Responses

Response from Inge Vuuregge, NCSR Nursing & Operations Co-Director, Executive, Prince of Wales Hospital last month
Inge Vuuregge
NCSR Nursing & Operations Co-Director, Executive,
Prince of Wales Hospital

Senior Nurse Manager

Submitted on 12/06/2025 at 9:51 AM
Published on Care Opinion Australia at 1:03 PM


Dear tigerkc84,

Thank you for taking the time under these difficult circumstances for your family to share with us your experience with our Palliative Care services. We are very grateful for your kind words of recognition of all our clinical staff who were involved in your mother’s care and the support you received from the team. I acknowledge the challenges you have outlined in your feedback prior to the involvement of our Palliative care team.

We appreciate you taking the time to reflect and share with us your observations of the high care standards you were given. We always encourage our staff to provide the highest standards of excellence and your experience is a great testament that we are providing compassionate and empathetic care to all our patients and their families.

We appreciate to read how impressed you were with your experience and how grateful you are for the staff's dedication and professionalism. We will make sure that your kind words of gratitude and appreciation are shared with the Palliative care team at the Prince of Wales Hospital.

I am so sorry for your loss and please accept our sincere condolences for the loss of your mother, May She Rest in Peace.

Kindest regards,

Inge Vuuregge

Co-Director of Nursing & Operations NCSR

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