“When you are born you gain skills and abilities in a particular order and we call them milestones,” explains Professor Kathy Eagar, Director of the Australian Health Services Research Institute, University of Wollongong. “At the other end of life, people lose skills in the reverse order to which they acquired them. This is a really important idea.”
Professor Eagar goes on to explain that understanding what is called functional decline is vital in accepting and planning for the natural dying process. In palliative care a particular tool for measuring this functional performance is called the Modified Australian Karnofsky Performance Scale. The scale goes from the ability to do the activities of daily living through to being profoundly weak, in bed, lapsing in and out of consciousness. “When a person and their carers know the natural dying process, and that these symptoms are not unpredictable problems, that reduces the distress for everybody.”
Many people are surprised that pain is actually not the most common indicator that death is nearing. In reality, the most common sign that your loved one may be in the final weeks or even days of life is fatigue.
“The solution is not to fight that, it's to accept it,” says Professor Eagar. “Services will work with the person on what they call energy conservation. What's the most important thing you want to do tomorrow and how can you manage the rest of the day so you've got enough energy to do that one thing?”
For caregivers this could can mean asking that same question of your loved one and planning the days and weeks ahead with those priorities in mind. That may even mean limiting visitors and asking people to send videos or audio recordings instead.
Dean cared for his mother who died at home a few days after her 90th birthday. "She came home sitting up in a wheelchair," says Dean. "From that moment we had gentle visitation just grandchildren."
Loss of appetite
Professor Eagar says that when people haven’t been told about loss of appetite they can panic, some may even try and force food and drink onto their loved ones. “Families feel really distressed and say, ‘Eat something, you'll feel better’ or, ‘Have a glass of water, I'm worried you're going to get dehydrated’ without recognising that this is part of the process,” she says.
“She hadn't drunk or eaten in days and her body started to change,” says Dean. “And that was very confronting.”
Sucking on ice cubes or moistening lips with a wet cloth and applying a soothing balm can be helpful in managing dryness on the mouth and throat.
Pain, breathlessness and bowel movements
Other frequently occurring symptoms that can indicate that the end is near are pain, breathlessness and a change in bowel movements.
Dean remembers the final days of his mother’s life as personally demanding. “It was very confronting - all the personal hygiene and delivering the morphine,” he explains. Knowing what is coming can help you prepare emotionally, as well as practically. For Dean that included having home care and his daughter to assist with lifting his mother for regular repositioning and cleaning.
Working with your loved one’s doctor or palliative care team can ensure you have the right pain management plan. They will also explain any side effects of the medication in order to give you and your family a clear understanding of what is a normal part of the treatment. For example carers can grow concerned that their loved one has stopped having bowel movements. “This is often linked to morphine and other painkillers,” says Professor Eager. “They can make you really constipated.”
For breathlessness, simple solutions like “a little handheld fan that you're blowing into the person's mouth” can help, says Professor Eagar.
At the very end your loved one may be slipping in and out of consciousness. “And then, those last skills that you lose are the same ones that a baby has,” says Professor Eagar. “The first thing that happens when you are born is that you breathe, and the second thing that happens is you know how to suck. The last thing you do before dying is you stop breathing. And before that you've lost the ability to even suck on ice or water.”
There is support
The final days of life can be incredibly demanding physically and emotionally. With so much to manage and coordinate, especially if your loved one is at home, you may feel unable to be present in the way you had hoped. “I think I became almost like an unpaid professional,” says Dean.
“It is incredibly difficult to have the whole journey on one person. If I could go back and tell myself one thing, it would be to try and be present. That really means that those people doing the caring have to be supported. I have my own kind of meditative practices , but I would have benefited from someone taking the time to go, 'So, how you going today?' And be able to blurt the story out.”
The support of a Violet guide, along with clinicians, professional services, friends and family, can lighten the load. All Violet guides have extensive training as well as personal experience caring for a loved one. Support calls are free, confidential and delivered over the phone when it suits you best. Amongst all the work of tending to the needs of your loved one, a Violet guide can help you be present and make the most of the final days you have together.