By Andy Fernie
When my Mum was diagnosed with Alzheimer’s I was frightened for her. I spent some of my professional life working in a dementia unit as a nurse and was fully aware of what was ahead for the last part of her life journey. Throughout her life we had such an amazing bond, she was an incredible human and she spent a lot of her life listening and helping others. She was incredibly wise, emotionally intelligent, full of love, very spiritual and she always saw the glass half full and never gave up. She had a unique laugh that everyone knew and could recognise. It was one of those laughs that made everyone else laugh and smile. She was always laughing and had such a wicked sense of humour. I couldn’t have asked for a better Mum.
After she was diagnosed with Alzheimer’s, I knew overtime what would happen to her brain and how this would affect all of her bodily functions. This was a double edged sword for me, grateful that I was able to explain to Mum with knowledge around her disease but fearful for her knowing what was ahead of her. Given our closeness and honesty in our relationship, we started talking about her condition and what it would mean for her and what to expect. She put her affairs in order before her condition affected her mental ability and she would be deemed medically unfit to do so.
Thankfully, when the time came my ex-partner Neil (who had a very close bond with Mum) found a beautiful place (by chance) for her to spend the last part of her life that was specifically designed for the different stages of her disease that were ahead of her. I was so relieved that he was able to do this because I was physically exhausted and mentally drained. She was relieved to move into the care facility. Knowing Mum was OK filled my heart because all I wanted was to make sure she was comfortable and in a safe place. She always did this for me and now it was my turn to do this for her.
Watching the disease progress was heartbreaking for the whole family. As her disease progressed we started to receive regular calls from her at around 4am each morning (when she was still able to use her mobile phone) thinking she was lost and that everybody had left her behind. Listening to the fear in her voice was distressing. We would try to comfort her and help her over the phone so she could find a night nurse and she could get some reassurance that she was safe and where she was. I dreaded getting these calls each morning as I felt helpless to stop this from happening for her. I can only imagine how difficult this is for other families going through similar situations and not fully understanding what happens to people with this awful disease.
The family would take her out to a local Japanese restaurant Brother Shota, every Friday night, where we always shared a lovely meal. I cherished these times as I knew at some point the disease would stop these special times from happening. Then those dinners became Saturday lunches until that dreaded day which I knew would eventually come, the last lunch she was able to manage. I remember looking at the wait staff and the sadness in their eyes watching Mum not able to cope whilst I tried to feed her food, and hearing her deteriorated speech whilst slouching in her chair. This was one of the points I was overwhelmed with sadness as I knew I was slowly losing my Mum. Alzhimers does this. You feel loss and sadness so many times as the disease progresses and you feel helpless as there is nothing you can do. At each of these stages, and when these situations occurred I cried a lot. It was another part of Mum I knew would not come back. You feel like you lose the person you love over and over again.
In the last year of her life, she was moved to the high dependency unit which was confronting even though I had spent time working in similar environments. I would visit her each day, cherishing the fact we were one of the lucky families still that she knew who we were. It was my biggest fear with her disease where I thought that one day she just wouldn’t remember our faces and who we were. Thankfully that never happened.
Then January 2020 came and being an avid reader of international news, I was alarmed to be reading about what was happening in Wuhan China. I started expressing my views to my good friends about what I thought was going to happen in the world and most thought I was being overly dramatic. Living in Melbourne Australia I went on a search for masks and hand sanitizer for my family and friends. In the back of my mind, I was scared for my Mum and her fellow residents. I was worried they were sitting ducks if this virus got into her nursing home. Those vulnerable people already had plenty on their plate to deal with health-wise, particularly when this virus had no form of treatment or prevention at that stage.
Unfortunately, and as we all know now what occurred, particularly in the aged care sector in Melbourne during the second wave of COVID, the alpha strain of COVID found its way into these care places. All levels of governments were scrambling around the world with how to handle what we now refer to as the global COVID pandemic. It was a time of anxiety for everybody.
Mum’s health deteriorated at this time, during Melbourne’s second stay at home orders. I was still able to visit her as she was considered, end of life. At the end of July 2020, Mum had three seizures in a 24-hour period, and it was extremely difficult to watch as they occurred even as an ex-nurse as it was happening to someone that I loved. The after effect where she was writhing around in her bed for hours after each seizure was heart-wrenching. It made me feel completely helpless. I thought to myself what more does this beautiful human have to endure. Mum now had no quality of life and was in a lot of discomfort.
When Mum began having these seizures earlier that year and was being taken in and out of hospital (which was not helpful for someone suffering from Alzheimer’s) we had her visited and put under the Calvary palliative care team, as the family were aware of her Advanced Care Directive and she was always very clear about what she wanted. This was something I could control and it gave me some comfort during a shitty situation. It helped feel that I wasn’t completely powerless, and something I could do for her to make her life a little easier. During this time, we asked for her not to be taken to hospital again as there was little they could do for her.
After she had the three seizures in that 24 hour period, I requested for the palliative care team to come and assess her. I couldn’t watch her experience that again it was way too painful and distressing for her and the family. During this time, I spoke with the family and close friends and discussed bringing her home under the care of the palliative care team. My biggest fear at this time was not being able to be with Mum if Covid got into her nursing home. The thought of her dying alone without family and friends, after everything she had gone through was unbearable and it made me feel highly anxious. Somehow, with the help of friends, within four days of Covid with stay-at-home orders in place, and a shortage of medical hire equipment we managed to transform the front bedroom of my house into a suitable place for Mum so she could come home for the last part of her life. It was an extremely challenging time, as once I had made the decision to take her home I thought to myself what happens if we can’t access everything we need to do this.
On the afternoon of the 4th of August 2020 we went and picked her up and I sat next to her in the back seat of the car and said to her she was coming home to stay with me. She looked at me with her eyes and nodded. She understood what was happening and said “good’ in her muttered repetitive speech. The love in her eyes said it all.I held her hand and reassured her as we made the trip home.
Prior to getting her home I was visited by one of the caring nurses from the Calvary Community Health Care Team checking we had everything we needed to bring her home, giving me a refresher as to how to administer all of her prescribed medications (as it had been many years since I practised nursing). These nurses are so reflective of their mission statement “Continuing the Mission of the Sisters of the Little Company of Mary” The 24 hour support that was available during the next four weeks was invaluable and the daily visits to support myself and my ex-partner Neil, especially during the last week when Mum stopped eating and drinking. These incredible nurses gave us such reassurance, and helped us overcome the feelings of doubt, despair and grief which we were all going through. I remember the night where she stopped being able to drink fluids and I panicked. I said to Neil what should we do, how will she get fluids. We rang the nurse on call and we had a very honest conversation around Mum’s imminent death. Even though I logically knew this was what was happening in my heart I didn’t want to face that finality even though I knew that was what she wanted. Grief is such a weird thing how it presents itself and how we all deal with it differently
There were a number of times we thought she had stopped breathing in those last few days but Mum held on and wasn’t ready to let go. The amount of time each family member was able to spend with her alone and together was something we will never forget. To be able to lay by her side on the floor every night and hold her hand. Telling her stories, laughing, crying and speaking to her even though she couldn’t speak back. I have no doubt she could hear what we were saying. It was such an intense emotional rollercoaster. She loved the company of our dogs, Bear and Stitch, who were constantly by Nana’s side at this time. Most importantly, we had the opportunity to be with Mum when she took her final breath, during a time when so many others couldn’t be with their loved ones because of Covid. My heart breaks for those families and dear friends that Covid robbed such special moments from, and for all of the doctors, nurses and allied health staff that have had to hold the hands of other people’s loved ones while they said goodbye via an iPhone or iPad.
Mum passed nearly four weeks after leaving her nursing home. As difficult as it was at times, I would not change a thing. It was such a blessing to have been there and to have been able to care for our Mum as she had done for her children and so many others over the years.