Carolyn cared for her Mum who was diagnosed with Stage II colorectal cancer. In this article, she shares her experience and outlines practical pointers and resources on what to expect in the final days, providing after death care, and ensuring one’s own wellbeing.
My carer role commenced last year when my mother was diagnosed with Stage II colorectal cancer. Mum moved from her home in the South West to my home in Perth for nine weeks whilst she had surgery. Mum returned home for two months, but then fell ill again. A CT scan revealed the cancer had spread to the liver and the pelvic region.
Mum moved up to my home again and my carer role recommenced. She was now diagnosed with Stage IV metastatic colorectal cancer (mCRC) and immediately commenced chemotherapy. After three rounds of chemotherapy, another CT scan showed the tumours had grown despite the treatment.
Mum was then referred to palliative care. Not wanting to admit defeat, we explored other treatment options, immunotherapy which was known to be more effective for Mum’s rare type of cancer (dMMR and MSI-H tumours). She received two rounds of immunotherapy, however one week before her third round was due, her oncologist phoned to inform us that she was too ill to proceed with the third round. This was a devastating shock to us all. Sadly, Mum passed away six days after that devastating phone call.
I cared for Mum for four months while she received chemotherapy and immunotherapy. Mum knew there was a possibility that she might lose her fight against cancer, so she asked me if she could pass away at my home, rather than in hospital or at a hospice. Although Mum was an outgoing person, she was also very private, so passing away at my home was an obvious choice, and one we willingly agreed to. Being home for her final days was one way of controlling the care she wanted, even if she couldn’t control the disease.
" Being knowledgeable and prepared can make the journey easier. This can be done by accessing reliable, credible, and up-to-date information when searching online. "
Caring for a loved one in the home can be very satisfying for both the carer and their loved one. You can provide a personalised care that is unique to that individual. Personally, it was an honour to care for Mum, as I was able to give back to her, for all she had done for me during my life.
Caring for a loved one in the home does come with its challenges, trying to balance the caring along with normal household duties. Having a supportive network can help you maintain a normal routine, by allowing you time to participate in your regular activities. Caring can drain your energy levels and affect your emotional wellbeing, so having support is vital. Looking after yourself is important, so you can be the best carer possible for your loved one.
As Mum passed away very quickly, we did not have time to prepare ourselves for this. The nurse did make us aware of some signs to look out for, but looking back, we would have been more prepared if we knew the following:
- Signs of approaching “end of life”
Significant physical deterioration: Being immobile for more than half the day and increased dependence, where a loved-one requires assistance with most or all activities of daily living.
- Imminent signs of death: there are two phases of imminent death.
- The first phase is called the early phase, which lasts for around two weeks
- The second phase is called the late phase, which lasts around three days.
"It is important to be aware of symptoms of impending death. "
Signs of the early phase include: withdrawal, restlessness, agitation, confusion, excessive sleep, changes in breathing and reduced urine output.
Signs of the late phase include: semi-conscious state, agitation, inability to eat, drink or speak, very dark urine, incontinence, breathing through open mouth, cold hands and feet, mottled/blue-purple colouring/markings of the skin, jaw dropping, respiratory congestion and abnormal breathing patterns.
Why is it important to provide care at end of life?
I found caring for Mum at the end of life, was an opportunity to care for her at a time when she needed me the most. It was also one way of respecting her wishes. It allowed me to spend precious, uninterrupted time with her.
How can carers prepare themselves for events that occur immediately after a death in the home?
Unfortunately, I did not receive some vital information from the nursing team regarding after-death care. I now realise timing is very important. From my experience, it is best to call the palliative care nurse as soon as possible after the passing, to confirm the death. Your loved one may have released the contents of their bladder and/or bowel after passing and you may wish to bathe and re-dress out of respect. If so, this is best done within the first hour after the death, before rigor mortis sets in.
Rigor mortis is a condition where muscles relax and the body begins to stiffen (around 2-3 hours after dying). I recommend bathing and dressing your loved one in the first hour, because it is very difficult to move and lift the body once rigor mortis set in and some people can find this visually distressing, confronting and emotional challenging. Laying the body flat with the head supported by a pillow is recommended early on before the body begins to stiffen. You can then contact a funeral director of your choice to collect your loved one’s body.
How to achieve effective support during the grieving and bereavement period?
The death of a loved one, is an emotional time and support is vital during this period. In addition to the loss of your loved one, you may also mourn the loss of your carer role. Generally, bereavement support (phone call, counselling, and written literature) is offered through the palliative care nursing organisation. Unfortunately, I did not receive bereavement support due to some misunderstandings. Looking back, I could have benefitted from bereavement support, as I struggled shortly after my Mum’s passing with the events that unfolded. I did however, offer feedback to the palliative care organisation and consequently I received an apology and a complimentary counselling session from them, which helped me to de-brief my experience and move forward with my grieving.
My main advice to carers would be to gain knowledge (in advance if you can) about what to expect when your loved one is dying (signs of imminent death) and shortly after their death. Being knowledgeable and prepared can make the journey easier. This can be done by accessing reliable, credible, and up-to-date information when searching online. Below is a list of resources that I would recommend:
Resources for end of life:
Resources for immediately after the death:
" Looking after yourself is important, so you can be the best carer possible for your loved one. "
Resources for grief and bereavement after the death:
Books that I bought and found very beneficial:
Keeping a daily journal throughout the caring period can be beneficial during the caring role and also afterwards, so you can reflect on your journey and remember not only the precious time you spent with your loved one, but also the little things that you experienced which made your caring role important and validated.