Necessary support needed for natural and informal caregivers
Blog 1 27—09-2019
In the last few years, my interest was focused on learning and expanding my thoughts, questioning my conditioning and educating myself about the complex and diverse subjects of death and of dying. For quite some time now, throughout Canada, we’ve carried on conversations, dialogues and debates about assisted death, better palliative care and other themes and aspects regarding end-of-life issues. All with the intention and desire to improve the life quality of many. And hopefully, we will continue to do so. These discussions solicit my interest and fuel my passion. They all contribute to my continuous education on these difficult themes of end-of-life issues, in these times of fast change.
I have realized that informal caregivers may often be forgotten and less considered in these end-of-life conversations. Often, like pegs on a board game, they nervously move around the patient wanting to be of help and service. Most people close to a sick person want to help. Sometimes, though, it also happens that many resist the whole situation for reasons of their own. Often people caring for a terminally ill family member are unprepared for this most demanding work.
To be a caregiver is a family affair, the work of a community, a teamwork at the very least. We often say that it takes a village to raise a child. I believe it is the same as caring for someone with a terminal illness. Looking after someone who is terminally ill means paying attention to their whole being. Helping them with their hygiene, nutrition, digestion, constipation, pain and symptom management is at the top of the list, of course. But consider dealing with other important pains such as emotional and psychological pains. Many sick and medicated people experience changing emotional and mental states. From fear to sadness, anger to grief, confusion to depression to name but a few of the potential situations. We can easily add to the caregiver’s list the management of the household, finances, estates and final wishes of the sick. More often than not, one also has to be a spokesperson for the vulnerable and weakened patient. They have to become a defender, someone who helps with medical, social and personal relationships. And all too often isolated, the caregiver devotes herself, day after day.
Caring for our own, our babies, children, teenagers, our sick and our elders take energy, know-how, competencies and different kinds of intelligence. We all learned while doing the job. So have our parents, grandparents and ancestors.
But so much has changed in the last decades. Particularly our family structure, here at home, in Canada. The ties formed between parent and child, siblings, and couples are different from 50 years ago. I dare to say that we now value independence more than interdependence. We seem to be more focused on individual success than on the success of the group, the whole. Familial and social structures are increasingly based on the sanctity of the individual. One of the repercussions is the workload often imposed on one or a few people to be caregivers within a family.
According to some statistics* I found, of those who care for people at the end of life, 77% of them are women, 70% are 45 and over, and 25% of them are at least 65 years old. Sometimes retired, sometimes housewife, and often mothers with jobs and careers as well. They’re called “The Sandwich Generation”. They spend more than 30 hours per week as a caregiver, apart from her home-family care. Often, they have to quit their jobs to become a full-time caregiver, especially in the terminal phase.
Caring for someone dear to us can be a profound and enriching experience. It can be deeply rewarding and bring us a sense of accomplishment. But the risks of exhaustion are very high.
I see an enormous need to bring respite, support, and guidance to people taking care of terminally people at home. This is why I feel compelled to contribute by offering my solid support, competencies and the tools I have acquired.
Support for caregivers is available online too. Here are a few that I have found:
End of Life caregiver
Help for cancer caregivers
LAPUI Caregiver support.
*Statistics - Dr. I Kelli Sajduhar - End of life and