Every weekday morning, 48-year-old Precious* takes care of her 80-year-old mother, who has dementia, before taking the 25-minute journey to work. It is like taking care of her only child, who is now an adult, all over again.
After waking up, it takes two hours before Precious can leave for her job as a secretary, where she arrives late, tired, stressed and watching the clock so she can leave exactly on time to go home to her mother to do it all again.
Dementia is any condition that causes a decline in mental functioning in a manner that impacts one’s memory, thinking, recognition, language, planning and personality, and ultimately limits the ability of the person with the disease to perform routine daily tasks.
In this never-ending, year-round process, Precious, her mother’s eldest child, is on her own. Compared to her three brothers and two sisters, she has the least education and the lowest income, but receives no financial or emotional support from them.
Unfortunately, Precious’ story is not uncommon. However, the selfless sacrifices of those who care for the elderly, almost always at the cost of their self-development, often go untold. While the stories of the uncaring and exploitative caregivers get attention – as they should, as we move to protect our vulnerable elderly – the numerous ‘Preciouses’ of Jamaica need recognition and structured support at the familial and societal levels, within a legal framework. It takes extraordinary courage to care, but as late Prime Minister Edward Seaga reminded us, it also takes cash.
Precious is one of the many family caregivers – an unpaid individual providing care for a relative living to a ripe old age of 80 and older and who experiences extended periods of chronic disability, for example, dementia, cancer, Parkinson’s disease and Alzheimer’s disease. The family caregivers are largely untrained, unsupervised, unpaid, and under-supported by other family members, but still manage to give selfless support.
These caregivers have many faces – elderly spouses who may themselves have health challenges; adult children who are caring for their own children even as they care for ageing parents; nephews, nieces, grandchildren, in-laws, and other relatives who may assume the caregiving role because they may be the only remaining family member left to care for a loved one.
While there is no formal count in Jamaica, the National Alliance for Caregiving and the American Association of Retired Persons (AARP) on Caregiving reported that over a 12-month period in 2015, approximately 34.2 million Americans provided unpaid care to an adult aged 50 and over in the USA.Caregivers provide activities of daily living (ADL), inclusive of bathing, feeding, toileting, as well as instrumental activities of daily living (IAD), inclusive of financial management, medication management, shopping, taking the care recipient to his/her doctor’s appointments and making decisions about overall care management. Additionally, there is the intangible, but invaluable, granting of dignity to the person being cared for.
Unfortunately, oftentimes all of these activities are left on the shoulders of one family member, the ‘burden bearer’, the one who others assume is always available to help.
This can put a strain on the family caregiver who, having made the decisions regarding the recipient of care, has to then deal with the disapproval of the other family members, who tend to be the most critical, yet offer no support.
We must not forget that family caregivers do not serve in isolation of the other roles and responsibilities in their lives. The stress is immense – many of us may know of a family caregiver who dies, leaving the recipient of care behind. It is not surprising that family caregivers are also called ‘invisible second patients’ or ‘second patients’.
Family caregiving has to be an important public issue in Jamaica because we are living longer and, with old age, there is an increased risk of sickness and dependency. In the words of Rosalynn Carter, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
Family caregivers need our support, they need more family support and, most of all, they need to be recognized and affirmed for the personal sacrifices that they are making and this is best accomplished with laws and policies which not only reward and support the courageous caregivers, but also penalise the uncaring and cruel.