What Is Caregiver Stress Syndrome?

Caregiver Stress Syndrome - The stress brought on by the unvarying, unending, unrelenting,care of a person who is totally or even partially reliant is insidious in that pulls out and chews up bits of the caregiver’s sense of self, self esteem, self worth, self confidence and self determination in barely noticeable increments. That is until one morning the caregiver wakes up after yet another night of too little sleep and notices that not only has their entire life as they knew it vanished, they too are gone, swallowed up by their role and no longer recognizable to themselves. The sense of isolation is profound, acute and overwhelming.

As our North American society ages, more and more family members are finding themselves cast in a role that is not of their making. It is a part that most are ill prepared for,having no knowledge, no training, and little experience. While almost all of us have taken care of another on occasion it was a short lived and temporary role rather than a chronic one. It is that experience of looking after another on occasion that leads the "caregiver" willingly into the role as most of us have little hesitation in lending ourselves to those we care for and hold dear. What one does not predict and indeed cannot predict is the quagmire of unknowns that they have innocently and with the best of intentions, stepped into.

The other factor that lends itself to the delusion that allows one to unwittingly don the costume and set out onto this new stage is that, “in the beginning”, when whatever catastrophe befell, there were friends and other family members about, sharing the load, offering comfort, lending themselves to the situation. If you have children, they will care for them, if you have a job, someone will fill in for you, if you have commitments, people are given to understanding when you have cannot meet them in the short term. However, these people still have lives to lead and they soon get back to living those lives. So they should but, for the caregiver, their leaving is often the first shovelful taken from what all too often is destined to become a veritable pit of despair.

In many homes across North America and other countries around the world those who care for disabled or chronically ill loved ones have gone about their business, unseen, unnoticed and unheard. In the United States alone one in every four families is caring for someone over the age of fifty and that number is expected to rise dramatically in the coming decade. Recently the stress experienced by family caregivers has actually earned a “label”. Dr. Jean Posner, a neuropsychiatrist in Baltimore, Maryland, describes “Caregiver Syndrome” as “a debilitating condition brought on by unrelieved, constant caring for a person with chronic illness or dementia”. Although the plight of those caring for chronically ill and/or disabled family members is not new, the fact that this group that works endlessly and unnoticed by the rest of society is are now being identified is only just beginning to come to the attention of the medical community. The term Caregiver Stress Syndrome is not yet recognized in American Medical Literature and it is not until 2003 that the term came into being and was given a proposed definition. A study done by the American Academy of Family Physicians stress in 2007 revealed that less than half of those providing long term care are even asked by their physicians if they have let alone it being addressed.

Caregiver Stress Syndrome (CSS) is a proposed definition:

A syndrome found in caregivers involving pathological, morbid changes in physiological and psychological function. This syndrome can be the result of acute or chronic stress, directly as a result of caregiving activities.

Source:
Guia DM. 2003. Caregiver stress syndrome. Letters to the Editor. Townsend Letter for Doctors and Patients.

In recent years, Caregiver Support Groups have been formed and the internet has made information on this “syndrome” readily available. The problem is the majority of caregivers do not seek help. There are valid reasons for this. Firstly, whatever it was that happened to cast them into this role was both sudden and unplanned; a shock has occurred and in that shock is a point of collapse. What collapsed? Their present time collapsed , the games they were playing in life collapsed, the positions they held and the roles that they played within those games has collapsed, their visions collapsed, their plans collapsed, their knowledge collapsed, and their goals and dreams for the future dreams collapsed. In one instant of absolute clarity they know,without a single doubt, that their own life and the life of their love one will not only never be the same again but that the jointly held visions for their future have been wiped-out – and then they shut it all down. And, from this collapsed universe, from this totally caved-in state, from this world that is no longer round but instead stretch before them in a vast expanse like some horribly over-sized pancake they emerge like zombies and begin to go through the motions of doing what must be done. Many people have walked out of a horrible car wreck insisting that they are fine only to collapse from the extent of their injuries. They can do so only because they are in shock. It is out of this state of shock that the role of caregiver is born.

While much attention is being given to the injured or ill party, this very newly formed “caregiver” is all but ignored but for being asked to pull out from a mind swimming in chaos, information relative to the care and well-being of their loved one. Therefore,before the stress of their role even begins to take a toll, even factors in,before they even take up their “care giving activities” there is a shock. A person in shock cannot create, a person in shock is at the effect of life; a person in shock is sitting in a collapsed universe. This is hardly an optimum setup for operating as a caregiver. Without handling the shock caregivers are doomed to burn-out, and to experience all manner of “symptoms”that make up what is now being labeled as “Caregiver Syndrome”. This plethora of symptoms is but a manifestation, the effects; but they are not the cause. The cause is contained within the shock. In that split moment of clarity and awareness a decision was made. It was made in a moment of extreme upset surrounded by negative, unwanted conditions and emotions. Go to the moment of shock, get that decision that was made, handle the negative emotions attached; in other words, handle the shock and the “caregiver”, the Self, is restored. That Self, can then reach for help, can gain the required knowledge and abilities to do their tasks, and access support and “Caregiver Stress Syndrome” will either not manifest or be easily recognized and handled before it gets a hold and begins its take over.

As it stands now, without handling the shock, the Caregiver is on a steep and slippery slope to their own emotional and physical health issues, issues that in caring for another they can ill-afford to have. Caregiver burnout is real and it is devastating!