There is a commonality in all caregiving experiences that crosses the boundaries of nationality, ethnicity, age, diagnosis and relationships. The common bonds are embedded in our core as human beings and can be a source of support for people who provide care for a loved one.
In countries where the role is formally acknowledged, the terms “carer” or “caregiver” are often used to describe people who provide care for a family member or friend. I believe an apt term is “family caregiver”, which has been defined and described by Carol Levine, Director of the Families and Healthcare Project of the United Hospital Fund in New York, USA, as:
“A person who provides essential, unpaid assistance to a relative or friend who is ill, elderly or disabled. The two parts of the term are equally important. ‘Family’ denotes a special personal relationship with the care recipient; one based on birth, adoption, marriage, or declared commitment. ‘Caregiver’ is the job description, which may include providing personal care, carrying out medical procedures, managing a household, and interacting with the formal health care and social service systems on another’s behalf. Caregivers are more than the sum of their responsibilities; they are real people with complex and often conflicted responses to the situations they face.”
The distinction between the word “family” as the definer of a caring relationship and the word “caregiver” as the description of a job is an important one. Putting the two together as a single term is what distinguishes family carers from others who provide care, such as doctors, nurses, and homecare aides, none of whom fit the description above. This is largely because the care they provide stems from the professions they have chosen to pursue.
Although there is a commonality, there are certainly differences in each caregiving situation too. A caregiver helping an elderly aunt who has diabetes will, of course, be dealing with different issues than a caregiver whose spouse has multiple sclerosis. These are the differences between carers’ individual daily realities, and they are very real indeed. The things that separate them are their loved one’s diagnosis, the specific parts of the body or mind that the condition attacks, the nature of the health care system they live under and the amount of support received through governments. But despite these differences, it is the universality of our humanity that binds caregivers together.
I know this from both my professional and personal experience. I am a family caregiver for my husband Steven, who was diagnosed with MS in 1974 at the age of 31, not an uncommon time for the illness to surface. Unlike most people with MS, Steven’s type of MS is chronic progressive and so I have watched his slow deterioration over the years. Today he requires help with all of the activities of daily living. Our hope is that the deterioration will stop so we can develop life patterns around a constant normality. Our fear is that he will end up without any mobility at all.
I have experienced all of the common emotions of carers and, like many other carers, have suffered from clinical depression. In fact, a US study found that caregivers suffer from depression significantly more than non-caregivers. It was estimated that spouses who are caregivers suffer from depression six times as often, and children of aging parents suffer twice as often.
I am luckier than many though, because I know that the thoughts I think and the emotions I feel are shared by millions of other people. I, at times, feel personally isolated from friends and colleagues who are not carers but I never feel isolated from the millions of family caregivers around the world. I know I am part of a very large and growing group of people, a group that is destined to grow even larger as medical science and healthier living practices keep us alive longer than at any time in history.
I am a family caregiver and I talk about it easily. It is not something I am proud of; rather it is a part of my reality. I wish this was not the case, but I know that because I am not afraid to tell others about our circumstances, Steven and I have had more opportunities to reach out and receive help and assistance – help that is vital to us having a reasonable quality of life.
MS is not a short-lived disease – it comes early and stays late. The caregiving may begin as an emotional shock during the period of uncertainly before a confirmation of diagnosis or when the diagnosis is given, or may increase gradually over time. But over the years it is essential for carers and care recipients alike to learn to live well despite the difficulties and to acknowledge their pain, their fear and their losses.
Caregiving by definition is an emotional experience and a commitment to care and provide care. It can be hard, and sometimes scary and frustrating. But for carers who recognise millions of others share their common concerns about relationships, finances and their own health, there is a somewhat easier path that comes from the knowledge that they are not alone. This knowledge also brings opportunities to reach out to others in similar circumstances for information and support and to help make life better for all caregivers.
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