My Journey of Grief and Loss

By Danielle Phillips

As the family and I left the hospital room, knowing it would be the last time we saw Dad, a feeling of hopelessness came over me. Did this just really happen? My cousin Hannah was pushing Mums wheelchair as we all silently dragged our feet down the corridor, into the lift and down to the car park.

I invited Mum to share the bed with me when we got home so we could be close, but since we had been at the hospital for over 7 hours Mum hadn’t had her pain medication and muscle relaxants, so she was in writhing pain. I found it incredibly hard to sleep, even though I just wanted to close my eyes and pretend it was all a bad dream. Mum’s brother Richard and his wife Leonie stayed the night and came in early to get Mum out of bed, dressed and fed her breakfast. It was not until 2pm when my Uncle Richard poked his head into the bedroom and said, “it’s time to get up, there’s things we need to do”. My phone was ringing off the hook, my messages pinging, voicemails were piling up and I just wanted to pull the covers back over my head.

From that day on I knew Mum was going to be completely and utterly dependent on me. I rang my employer and told them what had happened and made clear Mum was my priority and which they agreed. I had no idea when I would be going home to South Australia let alone to work, with hard border closures in place and no end to QR codes and restrictions in site.

Mum managed at one point to tell me that when the paramedics came to take Dad to emergency, he was taken straight from the front bedroom into the ambulance. He didn’t get to kiss Mum goodbye; they didn’t get to tell each other they loved each other. Mum said she overheard Dad telling them that they were about to celebrate their 40th wedding anniversary. It was something I know they were both so very proud of, and something I am so very proud of. They had been through thick and thin. To have had to part ways like that after 40 years of marriage without a hug, a kiss, or a goodbye was something that haunted Mum for the rest of her life and still haunts me.

It wasn’t long before the home phone began ringing and Mum’s lovely friends and our family began to request to see her and pop over to offer their condolences. Soon our entire living room was wall to wall with bouquets of flowers and condolences cards. Friends and family showed up with an outpouring of love and sympathy. But because of Mum’s disease she couldn’t receive these gestures in a way that most grieving widows could. She couldn’t cry, she couldn’t stand and receive people’s loving arms around her, she couldn’t pick up the phone, she couldn’t articulate what she was feeling. Mum always used to say to me “life’s not fair”. So here we were, in this devastating situation where she had been given 5-7 years to live, was in her 5th year of the disease and in the midst of Covid-19. How’s that for unfair?

With no brothers or sisters and my Mother incapacitated, I began the heartbreaking process of arranging Dad’s funeral service. Mum’s local pastor came to our home the following day along with Barbara King Funerals to go through the various items of the funeral service. Thankfully Mum was able to communicate most of her preferences, so it did feel that we were making decisions together as a united team. We were a team and always had been. It sometimes felt like it was Mum and I against the world. We did everything together and I couldn’t fault her as a person or a Mother. She alway radiated joy and love towards anyone she knew.

The hardest decision we had to make was who could come to Dad’s Funeral. There was a restriction in place of only 20 people allowed in the church, so those who didn’t make the cut had to listen to the service via outdoor speakers and via live stream on their phones. We weren’t allowed gatherings in homes of more than 10 people at a time either, so we had just a few people at Mum and Dad’s after the service.

There was one moment that remains so memorable to me, and that was when the Funeral Director knocked on the door to deliver Dad’s ashes. I was in the middle of feeding Mum and then had to get to shops for some last-minute groceries before they closed at 5pm. I opened the door and there was our funeral director holding Dad in her hands with the paperwork for me to sign. Both in our masks and trying to adhere to Covid safe distancing protocols, she handed him over to me. I immediately started sobbing and the lady couldn’t help but give me a brief but comforting hug. I had to return immediately to Mums side and then rush out the door to get to the shops on time, whilst one of Mum’s friends watched over her for me. I barely had 3 minutes to process receiving Dad. The situation was so momentous and overwhelming, and time should have been available to me to feel and explore the full suite of emotions that come with bringing someone’s ashes home. But instead, I lit a candle next to the urn later that night and tried to take it all in.

With Dad as Mum’s full-time carer no longer with us, I immediately stepped into this role and arranged additional in-home support via Calvary Care, where I would share the load of feeding, medicating, showering, dressing and toileting Mum with their incredible team of carers. We moved Mums hospital bed out of the bedroom into the main living area, so whilst I was managing the other household items and the long list of administration that needed to be done, we could always be close by to each other.

Between May and July I had made the decision to take Mum home to South Australia with me and find her nursing home care. Fastforward to July 9th when South Australia officially reopened its borders with no quarantine requirements. I ended up selecting Helping Hand at North Adelaide who were extremely accommodating of our needs, and so with that as much as our entire family on the Central Coast were apprehensive about me relocating Mum, off we went again, just the two of us.

My partner who I hadn’t seen since I left on the 3rd of May picked us up from the airport and took Mum to her new home: Helping Hand North Adelaide.

Being a healthcare facility Mum still needed to quarantine for 2 weeks, so I came into her room and sat with her in bed all day on repeat for 14 days. When Mum was finally able to leave the facility to see the light of day, it was evident that reality had set in and she confided in my partner, she wanted to die.

Months went on and eventually I went back to work in September, but with the immense and incredible help of my loving partner who brought Mum home to his house every evening, we were able to share a few hours together almost every night for time Mum was here. My partner would feed her dinner, and spoil her with decadent desserts from the Adelaide Central Markets every day. Mum never used to have a big appetite, but she had no problems putting away a kataifi the size of a brick every night with us. I’m pretty sure it was her taking advantage of the limited time she had left before she lost the ability to swallow. And she knew all too well that time was coming soon.

Little by little we saw the light come back into Mum’s eyes and she was able to smile and laugh with us when something was really funny. We took her everywhere with us; the art gallery, wineries, the botanic gardens, the beach esplanade, friend’s houses, you name it. And every time she needed to be placed in and out of her wheelchair or a car, my partner picked her up and swaddled her like a little baby, so we didn’t need to use a mechanical lifter. Most of the time we were able to arrange a disability taxi, but there were times at night when there were none available, and so Mum was swept up, placed in our car, taken to her room and lowered into bed ready for the nurses to undress and prepare her for sleep (which she didn’t enjoy a lot of).

High Tea for Mother’s Day
9th of May, 2021

It was in October 2021 on a walk through the Mt Lofty Botanic Gardens that Mum indicated to us (at this point through minimal speech and blinking) that she was mentally really struggling and didn’t want to go on. Mum always said when she was ready to go, she would stop eating and at this point she was finding it increasingly more difficult to swallow.

I let the family in NSW know this was how Mum was feeling but in SA we had just closed our borders again due to a surge in cases in other states. Family was allowed to visit Mum on a medical exemption, however the protocols and restrictions in place were severe. The hotel confinement included a daily PCR, a police escourt to and from the nursing home and full PPE attire to be worn.

For most of the family that was the last time they ever saw Mum.

On New Year’s Eve, Helping Hand North Adelaide declared a lockdown of its facility when a few of its residents tested positive for Covid-19. Here I was again, helpless, and locked out from seeing a parent in a vulnerable position. Fortunately, due to Mum’s high care needs, after Mum was tested and returned a negative result, and before every time I entered the facility I returned a negative RAT, I was able to come in to see Mum for 1 hour per day. The facility was in hard lockdown for almost a month, and I think this was just the tip of the iceberg for Mum in her decision to wind down.

On the 4th of February after just reopening the facility, my partner and I arrived in Mum’s room ready to take her back to our new house which we had just moved into. When I approached Mum to get her ready, I noticed she was bright red and had a mouth full of dark green and brown phlegm. This wasn’t anything that had happened before. The clinical nurse immediately called an ambulance suspecting aspiration. Mum was taken immediately to the Royal Adelaide Hospital and admitted overnight. I was unable to enter the emergency department and so I had to wait until Mum was transferred to the ward to see her the next day. The speech path was in with Mum when I arrived trying to get her to swallow liquid. No dice. He was having to use suction just to extract the surplus mucus and saliva out of Mum’s mouth that she couldn’t clear herself.

Soon after, the specialist came in with her prognosis; Mum had reached the stage of the disease where her muscles were unable to regulate her mucus production and swallowing. The doctor said the only option was to transport Mum back to Helping Hand and “keep her comfortable”. The doctor also asked Mum if she was scared or had any questions and with a resounding blink Mum indicated “no fear”.

As soon as we arrived back to Mum’s room the nurse began to administer morphine, atropine and midazolam. Mum was officially in palliative care. I called my Uncle Richard who immediately jumped in the car with Aunty Leonie and drove 15 hours straight through from NSW to SA to arrive the next day.

The doctors had given Mum a couple of days with no food and water and on the palliative care drugs. I had a rollaway bed set up in the room with Mum so I could be there 24/7. Every time the nursing staff came in to check her obs in the middle of the night, I was expecting them to wake me up to tell her she had passed. But 7 days went past and Mum just wasn’t ready to go.

On the 12th of February just after 8pm I heard a sound come from Mum and then couldn’t feel her breathing anymore. We called the nurses in who confirmed Mum had passed. The staff burst into tears having looked after Mum for almost 2 years they exclaimed “We loved her”. My Mum could hardly speak two words, but the staff fell in love with her nature, her unspoken kindness and humility. My Uncle and Aunty and partner that were with me all began to sob and called the rest of the family to tell them Mum had passed.

Watching Mum deteriorate in such a way was a trauma that I will never forget, but it was a privilege that I was able to bathe her and soothe her in her last few days on earth.

In April 2022, I took Mums ashes back to NSW where we had a fitting celebration of her life among her many friends and family. Restrictions had been lifted in all states and I had ample time to prepare a service to do Mum justice and for everyone to say goodbye.

Recently my dear Uncle Richard passed away very suddenly and unexpectedly. I felt a completely different type of grief for him on top of what I had felt when Mum and Dad passed. It was the end of a long family lineage, the last full blood connection to my Mum. My identity has been shaken not stirred. He was a constant in my life and has left behind his beautiful wife, 4 children and 8 grandchildren. My heart breaks for them all and the way in which things happened were so similar to how they happened with Dad, so it’s still taking me a while to process.

For those of you who have lost loved ones, before, during, or after Covid-19 my heart goes out to you, and I hope that inviting you to read my two-part story helps you to feel understood in any way it can.

My journey of grief and loss - Part 2

My journey of grief and loss - Part 1

My top tips to manage grief.