When it comes to home care, there are family caregivers and there are hired caregivers.
The death of a patient and/or loved one inevitably has a profound impact on everyone involved. We are all guaranteed to make human connections with the people in our lives; a loss is a loss, no matter the role we play. In this article we will discuss the nuances of grieving as a caregiver. That said, it is always wise to seek help from a professional grief counselor when a client or loved one under your care dies. They can help channel all that inevitable emotion into an appropriate outlet. The experience of loss is complex, unique to every person and situation, and sometimes caregivers simply need someone to help guide them through it.
Navigating Boundaries
All caregivers are required to navigate the gray area between compassion and professionalism, to experience their own grief while at the same time respecting that their role is to be of service to the patient and family, regardless of personal feelings. For caregivers who are also relatives, this often means allowing the grieving process to begin before death, and for hired caregivers it means acknowledging grief while at the same time not intruding upon the family’s mourning process.
It’s time to take a close look at a common caregiving buzzword: boundaries.
In its most literal form, a boundary is a dividing line that marks an area’s outer limits. But when it comes to healthcare, under the guise of professionalism, the term “boundaries” has come to mean something more akin to the building of walls as a means of personal protection. But that’s just not how human animals work. We’re porous creatures. Trying not to feel, or numbing ourselves so far that we simply cannot feel, is a dangerous game.
The question at hand is not how caregivers protect themselves from pain, but rather how they master their compassion and work within the framework of grief to serve their purpose.
When long term degenerative diseases strike, family members often take on the role of lifelong caregivers. As a way of demarcating their high level of involvement, these family members are called carepartners. The world can thank the carepartners of people with chronic illnesses like MS for breaking open the caregiver health conversation.
Multiple Sclerosis is a particularly poignant example because it’s an illness that makes it hard for the brain to send signals to the rest of the body, resulting in a wide variety of physical and sometimes cognitive difficulties that can impact a person for their entire life. It is not a fatal illness, but it generally gets worse as the years go by. A physically and emotionally burned-out husband, wife, child, or parent who never learned the importance of self-care is simply not a sustainable care partner. And when it comes to MS, it’s all about the long haul.
In the National Multiple Sclerosis Society’s A Guide for Caregivers, health writer Tanya Radford reminds readers that just because a care receiver has MS, or any disease for that matter, that doesn’t change the fact that important relationships are always a two-way street. Carepartners are, by definition, active participants in the emotional lives of the person for which they’re caring. And when the illness at hand involves either a fatal diagnosis or diminishment of cognitive function on a level so great that the patient is no longer recognizable, grief will unavoidably enter the equation. Let it.
Understanding Active Grieving
Family care partners can care for their emotional needs by practicing what’s called active grieving. It’s about noticing the small losses, mourning them, and meeting the ill loved one where they’re at, in their present state, rather than trying to keep them in a past that’s no longer a reality to them. The caregiver will be doing themselves a favor by meeting each challenge as it hits, and doing the patient a favor by being fully present in the moment.
It can also be psychologically beneficial to both the caregiver and the ill patient to actively talk about end of life plans. Nothing useful ever came of extended denial. Denial is a very real step in the bereavement process of course, but it is not one to linger in. A close family member can be a much-appreciated listening ear as a dying loved one accepts the future, even helping them decide between the numerous options for funerary services and celebrations. There are more avenues than ever for post-death memorial — ocean-loving families can even memorialize their loved ones in an underwater mausoleum complete with sea life, coral, and a species of urchin once thought to be extinct. Normalizing death by making elaborate plans for one’s body after death is an age-old method for channeling personal grief. A sensitive and matter-of-fact conversation with a trusted companion can be enormously comforting in the face of the big unknown.
This same act of compassion, while totally acceptable for a family caregiver, would not be appropriate behavior for a hired professional.
While it is important for a professional’s personal health to experience their grief in relation to a patient, it is equally as important that the patient and the patient’s family not feel the burden of the hired caretaker’s emotion. Close friendship and companionship, as noted earlier, is always a two-way street. A caregiver who feels drawn to that close friendship, and perhaps giving personal advice, must consider whether or not their friendship actually helps the patient in terms of their healthcare. It’s all a matter of roles. A dying patient and his or her family are not the appropriate targets for a professional’s inner grief work. They have enough on their plates as it is.
Navigating the grief process is never cut-and-dry, and both professional and family caregivers have a unique set of needs on top of it all. The best caregivers must learn to embrace the entirety of the dying process and take care to keep themselves supported throughout.
The art of caregiving is not as much about building protective walls as it is about absorbing all the positivity that the work has to offer and wringing out everything that doesn’t serve.
Author Bio: Brooke Faulkner is a writer and senior care advocate in Portland, Oregon. When not writing, she can usually be found trying to tire out her grandmother’s dog in the local dog park. Follow her on Twitter @faulknercreek
