April 24, 2017, by Pat Morden, Caregiver Exchange
“The most important ingredient in a successful death at home is information,” she says. “Caregivers need to understand the illness and know what to expect in the months ahead. That’s a crucial conversation that is absolutely missing with many of the patients and families I meet.”
Winemaker says doctors and nurses are often reluctant to talk about the dying process, feeling that they are adding to the burden on patients and caregivers. Caregivers, in turn, wait for providers to start the conversation and if they don’t, go home more worried than ever.
It’s up to caregivers to ask the tough questions, she says – not just ‘what is the prognosis?’ but also ‘what exactly will happen over the next six months?’ “It’s hard to prepare if you don’t know what you’re preparing for,” says Winemaker. “Caregivers often have to trigger the conversation.”
For example, they should know what functional changes to expect in the person they’re caring for. The person will be more tired, eat less, sleep more, withdraw a bit, and need more help with personal care. Knowing that this will happen, caregivers will be less likely to panic and take the person to the hospital.
They also need to understand that acute episodes may occur during the dying process. For example, a person with lung disease who has been hospitalized several times for breathing difficulties may well have another such incident. The key, says Winemaker, is learning how to recognize early signs, taking preventive steps, and having an action plan ready if a crisis does happen. It’s critical to know who to call, at any time of the day or night.
Caregivers must also be open and frank about how they themselves are doing and what support they need. If home is no longer a good option, they should know what other options are available and let go of feelings of guilt or failure.
When a death at home happens as it should, there are no surprises, Winemaker says. The caregiver has an opportunity to say goodbye and grieve, and the person being cared for slips away comfortably. “If that happens, I have to assume that the caregiver can return to normal life more quickly and in better health.”
For more information, check out this resource from the Canadian Virtual Hospice.
For local services that support dying at home, put your locality into CaregiverExchange.ca, then click on “In-home Hospice Care.”