The caregiving journey

Family caregiving can sometimes feel like being on a roller coaster – you go through ups and downs as the person you care for goes through different challenges.  Then there are dips and curves as the pressures from other parts of your life – children, work, finances – compound your caregiving role.    Now imagine this – the person you support as a caregiver has an episodic health condition.  Sometimes they don’t need your help at all, and other times, with little or no warning, you must drop everything and be there to support them.   That is the life of caregiver for someone with episodic health issues.  They are basically on the “behemoth” of roller coasters.   Sometimes they are rising slowly and are hopeful, only to suddenly plunge into a new set of challenges.

There are many different types of health conditions that are episodic – here are some examples:  HIV/Aids; multiple sclerosis; crohns/colitis; chronic fatigue syndrome; epilepsy; hepatitis C; many mental health conditions including depression, bi-polar disorder and schizophrenia; severe migraines; parkinsons disease and more. In fact, almost half of working adults with a disability have at least one of these conditions

Meet Richard and Maya. They have been married for 10 years. Richard is 34 years old and works at a national bank. Maya is 35 years old and works as a human resources professional in a medium-sized technology company. They have one child and are hoping, one day, for a second. At least twice a year for the past two years, Richard has had to take time off work to look after Maya, who is living with HIV. This year is worse than others, and both Maya and Richard are on their fourth request for time off. Maya, in particular, is starting to worry about job security for both of them. Neither of them can predict when Maya will be sick or for how long, and there is no way of knowing how sick she will be. Maya and Richard are both in their prime working years and neither has any connection to the ‘caregiving community.’

There are no statistics on the profile of episodic caregivers such as Richard since the concept itself was only recently identified. However, we can pinpoint a number of common elements for episodic caregiving.  They include:

o   Early onset and long term -people with episodic disabilities are often young and middle-aged adults and can live for 50 years or more with the disability, which in turn impacts the length of time, nature, and demands of caregiving.

o   Traumatic – The diagnosis of an episodic disability often marks a sharp and sudden demarcation in the life-course

o     Fluctuating periods of acute illness / flare-ups – The illness is punctuated with times of flare-ups that may require acute medical care and periods of recuperation

o    Unpredictable trajectory –This as a key challenge impacting the caregiver and patient’s ability to plan for the future.

o    Invisible and ambiguous disability – In many instances, the person living with an episodic disability will exhibit few overt symptoms. Employers, friends and family may be unaware of the illness or may not be sympathetic to reports of fatigue or other ‘vague’ symptoms associated with illness. Family caregivers reported feeling stigmatized and considered to be abusing time off work in order to care.

o    Ongoing adaptations – The unpredictable, fluctuating and possible degenerating aspects of episodic disabilities require that the individual, the caregiver and other close members of the family system continually adapt, sometimes over many decades, to the physical, emotional, cognitive and financial changes that the illness generates”

The next time your colleague at work or a neighbor takes time off work to care for someone unexpectedly, do not underestimate the importance of their role, or the toll it takes on them.  Start to look around for those “invisible” disabilities and you may begin to notice the large number of Canadians, such as Richard and Maya, who are impacted in one way or another by episodic conditions that become acute with no warning.  The more aware we are of episodic caregiving, the greater the chance that these caregivers can obtain more support and understanding for their important role.