Accompanying my mother through the process of dying as her carer, confidant and friend
Accompanying my mother through the process of dying as her carer, confidant and friend
by Heather WisemanThursday, February 09, 2017
While caring for her mother as she was dying, Shannon Calvert discovered strength she didn’t realise she had.
Mum was only 68 when she was diagnosed with metastatic cancer. She smiled politely at the specialist and asked how long she had to live. He said two or three months without chemo. With chemo, maybe two years.
Mum and I drove home in a daze. It was surreal. There were no tears. I said, “Mum from now on, you know that you can say anything and share anything with me and we can do this together”. I didn’t say, “You can fight this”. I couldn’t do that to her, because I knew everyone else around her would. Her main worry was about everyone else and how upset they would be.
My mum was one of the most compassionate and kind-hearted people I’ve ever known. She put other people first – her life was about her children, family and friends – and she had an incredible sense of humour. Even in the most difficult times she always managed to laugh.
Mum and I have always been very close; in some ways we were each other’s other half.
For almost 28 years I struggled with a chronic eating disorder. With that came physical complications, traumatic hospital admissions and three life-threatening surgeries. Not once did mum leave my side or give up on me. We genuinely believed that of the two of us, I would die first.
Since her death, I have had times when I wanted to lose the fight and thought I would completely fall apart. I nearly did. The intensity of missing her is indescribable. But I am now in recovery which has astounded my doctors. I had to gain strength to live in order to help mum with her dying.
Just two weeks after her diagnosis in October 2014 Mum’s health declined rapidly. Within weeks she was almost bedridden. She started chemo and a high dose of steroids. We didn’t consider any other options. No-one discussed them with us. It didn’t occur to mum that she had any choice.
Mum quickly got to a stage where she could barely walk. She compared herself to others who were having treatment, but still walking and able to continue with everyday life. She asked me, “What am I doing wrong?”. She was worried she wasn’t being strong enough.
Unfortunately, even with treatment, mum’s quality of life got worse. The steroids caused diabetes and she was admitted to hospital several times. Mum hated hospital having been there so many times with me.
Though I was still unwell, it was such a privilege to care for her. It was a confronting time. I could see with confidence that mum was going to die. Mum could feel it too. I remember saying, “Mum, I want to go with you”, and her replying, “No my girl, you are going to live”.
During one of mum’s hospital visits I came across brochures on palliative care and advance care planning. I asked a doctor whether mum might need palliative care, but he said no, she wasn’t in the terminal phase of dying so she didn’t need it yet.
That didn’t add up to me, because the brochures said palliative care wasn’t just for people who were going to die right there and then. I knew that it supported people who had a life-limiting illness, to help with their quality of life. Mum agreed that we should look into it, and if the time wasn’t right, we could just pop the brochures in the bottom draw.
I’d spotted a sign for the palliative care office and so I stuck my head in and told them about mum. They thought palliative care would help and suggested that I raise it with mum’s GP. He had no hesitation faxing a referral to Silver Chain, an organisation that provides community based palliative care over here in Perth.
A Silver Chain nurse visited for an assessment in February 2015. Mum was sitting up in bed and together we asked questions. The nurse told mum she was entitled to palliative care support while she continued her chemo. She told mum all decisions about her future care were hers, but mum and I didn’t have to do it all on our own any more. I remember the two of us wanting to cry with relief.
Mum said she wanted to die at home. The nurse asked whether mum wanted me to be her physical carer, or to support her just as a daughter. I told mum it would be a privilege to be both. She agreed to that, which was such a blessing. The nurse made it clear mum could change her mind at any time about any choices she made.
Mum couldn’t understand why she was still having chemo, even though she was dying and it didn’t seem to be helping with her symptoms.
Mum couldn’t understand why she was still having chemo, even though she was dying and it didn’t seem to be helping with her symptoms. The nurse organised a visit from a Silver Chain doctor, who explained she didn’t have to have chemo if she didn’t want to. That was news to mum. She hadn’t realised. After the doctor left, mum asked me to call the hospital to say she wasn’t coming in for chemo the next day. Mum knew she could reverse that decision at any time, but she never went back for another dose, or to hospital again.
Mum lived at home for another two months. To start, a Silver Chain nurse came every week. I knew I could contact them in an emergency or if we were concerned. It was lovely, because I felt very cared for and supported too.
Mum was concerned about getting her affairs in order, but I didn’t really know where to start. It was a huge relief when the Silver Chain social worker helped me to get the necessary forms and arrange a pro-bono solicitor to organise her will. A Silver Chain doctor guided us through her advance healthcare directive, helping mum to understand her options and make informed choices.
Poor mum was a very private and dignified lady, so to surrender to me showering her and helping take care of her needs was difficult. We laughed and we cried, but we got through it together. I understood all of her medication and was giving her injections.
Mum loved her beautiful bed. We enjoyed laying side by side together for a nap; when we were exhausted we would both fall into this most wonderful sleep. When Silver Chain suggested bringing a hospital bed in, mum was horrified. I was sad too, but I was quite frail and as mum became weaker I was finding it harder to lift her. When the new bed arrived I covered up all the bars with her pretty bedding and she laughed at that.
Looking back over that time I realise just how blessed I was to look after mum. We shared so many close and intimate moments and conversations. At times, I would walk into her room, see she was troubled, and ask what was going on. We talked openly about her dying. We talked about everything.
It was difficult, but together we planned her funeral; her songs, flowers and even her casket. Mum didn’t want anyone left with costs or burdens, so organising everything brought her a great sense of relief. It was confronting and upsetting, but it also helped us accept on a deeper level that she was going to die.
In the last three weeks of her life, mum began to experience more pain and discomfort. She was administered medication continuously through a pump, which was checked daily.
Mum could no longer lift herself or manage her wheelchair and walker. I could barely lift her to bathe her or get her to the bathroom. One day I felt I’d let her down by not being able to physically manage. I burst into tears and then mum start crying too. Silver Chain offered mum a trip to hospital for respite, but she didn’t want that and I didn’t want that for her. Instead, she agreed to have some come in to help me bathe her.
Silver Chain guided us with her other symptoms, so we knew what to expect. That helped to ease our anxieties and build acceptance. Rather than being upset when mum didn’t want to eat, I realised that it was natural. Mum was reassured by that too.
As mum came close to the final stages of dying, she found it hard to talk or stay awake. She said she was worried about how she was going to die, and scared she’d experience an event like a heart attack. Her doctor explained she would likely die peacefully in her sleep, or maybe from a blood clot in her lung, without any pain. We hoped for specific answers about how long she had left. We had to accept that she might have hours, weeks or months to live.
Not long afterwards, mum fell into a coma. Several days later, while my brothers were visiting, her breathing changed. For the first time in days, mum opened her eyes, looked at me and gave a slight frown. One tear rolled out of her eye and she was gone.
It was an early summer evening. I remember the sound of the wind chimes and the breeze blowing. My brothers and I hugged over mum. We were so relieved that we were all there with her and that she had died peacefully, as she had wished.
I sat with mum for a while, and a Silver Chain nurse came to help me prepare her. I had discussed this with mum and promised it would be dignified. It was.
On the day of the funeral, it was like mum was with me the whole time.
I’ve learned to experience and accept grief. There is no standard process. For me, I get a pull in my heart and then a sense of comfort comes from nowhere. I know it’s mum. It happens when I least expect it, leaving an overwhelming sense of peace.
I have no words to describe how much I miss her. I do have peace in my heart, knowing that mum died with dignity and grace, surrounded by her children in the home she loved.