The Unsung Heroes: Sacrifices of the Caregiver

I am the ears, eyes, feet and hands for my parents. There are no weekends off. I am always on call. I am the caregiver for Fitzroy and Vinette Campbell both of whom are octogenarians and have multiple health conditions. The Centers for Disease Control and Prevention (CDC) states that caregiving is a public health concern because it can lead to physical, emotional, psychological, and financial strain. Providing personal care and helping with behavioural and cognitive issues can be stressful for caregivers and result in depression and anxiety. The journey has been a challenging one with bouts of depression, and insomnia. Caring for one’s parents is a honour but comes with a price. The privilege of being a caregiver must never be taken for granted. One has to navigate the changing roles of responsibilities that are associated with caring for the aged. It can be a roller coaster experience especially if parents are outspoken and frank. There will be moments of disagreement. Such moments will require compromise for both parties. However, one should always be respectful. One can argue that is must also be difficult for parents too as their independence and identity are diminished as they now become more dependent on the caregiver. Caregiving is a lonely, hurdle-filled road that drains you completely. Oftentimes no one remembers the caregiver. Depression and ill health are not uncommon for caregivers. The CDC comments that nearly 1 in 5 caregivers reports fair or poor health. Who Are Caregivers?. No one signs up to become a caregiver. There are no manuals for caregiving. Caregivers typically learn as they go about giving care and are not formally trained. This monumental task requires patience, lots of patience and a culture of respect for both parties involved. In some instances, the monotonous nature of the job can and does lead to frustration for both the caregiver and those being cared for. The CDC reports that, 58% of caregivers are women. Additionally, 19% are 65 years old or older. The CDC adds that 37% are caring for a parent or parent-in-law. 9% of caregivers are providing care to someone with dementia. Interestingly, the data from the CDC does not address what percentages of caregivers are caring for both parents. Unfortunately, the CDC reports that nearly 2 in 5 caregivers have at least 2 chronic diseases. Chronic diseases are long-lasting conditions that usually can be controlled but not cured. People living with chronic illnesses often must manage daily symptoms that affect their quality of life, and experience acute health problems and complications that can shorten their life expectancy. Chronic diseases include diabetes, hypertension, asthma, cancers, glaucoma, arthritis and high cholesterol. An Emerging Public Health Issue. Millions of older adults and people with disabilities could not maintain their independence without the help of unpaid caregivers. This care would cost nearly $470 billion a year if purchased. That’s one of the reasons that caregiving is an essential public health service and should be prioritized as an emerging public health issue. Caregivers are family members or friends who typically provide unpaid, long-term, community-based care and assistance to older adults and people with chronic health conditions or disabilities. Caregivers help with a variety of routine tasks such as shopping, paying bills, accompanying the individual to medical appointments, bathing, dressing, and managing medicines. Caregivers are often a source of emotional support and companionship for care recipients. Caregiving is also a public health concern because it can lead to physical, emotional, psychological, and financial strain. Providing personal care and helping with behavioral and cognitive issues can be stressful for caregivers and result in depression and anxiety. Regrettably, nearly 1 in 5 caregivers reports fair or poor health. Caregivers often neglect their own health needs, increasing their risk of having multiple chronic conditions. Financial Strain. Caregiving can have a negative financial effect on both the caregiver and those being cared for. In Jamaica, the cost of medical care is prohibitive. In many instances the elderly do not have health insurance and this tremendously increases the out of pocket cost associated with medical care and intervention. Many employed caregivers have had to leave work early or take time away from work, resulting in lost wages. Nearly 2 in 10 employed caregivers had to stop working, while 4 in 10 had to reduce their working hours to care for a loved one. Caregivers sometimes pay out-of-pocket for caregiving services, meals, medical supplies, and other expenses. Almost 80% of caregivers report paying out-of-pocket for routine expenses for care recipients. Caregiving Weight and Stress. The number of people aged 65 years or older worldwide is projected to more than double, rising from 761 million in 2021 to 1.6 billion in 2050. The number of people aged 80 years or older is growing even faster and is expected to triple between 2020 and 2050 to reach 426 million. According to the United Nation while this shift in distribution of a country's population towards older ages, known as population ageing started in high-income countries (for example in Japan 30% of the population is already over 60 years old), it is now low- and middle-income countries that are experiencing the greatest change. The global concern over aging population growth will result in the need for more caregivers. The CDC estimates that the number of caregivers increased from 43.5 million in 2015 to about 53 million in 2020, or more than 1 in 5 Americans. By 2030, an estimated 73 million people in the United States will be 65 years or older. Many will require daily assistance from at least one caregiver to maintain quality of life, independence, and physical and social well-being. More than two-thirds of the US population will likely need help with tasks at some point in their lifetime. The Inter-American Development Bank reports that in Latin America and the Caribbean, more than 8 million older people are unable to independently complete at least one basic activity of daily living, such as eating, bathing or showering, or getting in and out of bed. This situation, called care dependence, affects 12% of people over age 60 and nearly 27% of people over age 80 in the region. The demand for long-term care services will more than triple in the next 30 years, due primarily to population aging and the epidemiological transition. The region will also see a drop in the traditional supply of long-term care services, which are based mainly on the unpaid work of women in families. Given this outlook, societies and governments must ready themselves to support care-dependent people and their caregivers, while at the same time advancing gender equity. Countries need to design long-term care systems, and they need to do so now. However, more specfic data concerning how best policies can be crafted and implemented to assist this most vulnerable group in society is urgently required. How to Support Caregivers. Being a caregiver is challenging and exhaustive even with support. If a caregiver is working with someone who has long-term needs, this becomes especially true. One has to be discerning, even if the caregiver has not asked; caregivers need our love and meaningful support. A good place to start helping caregivers is simply giving them time off, time they can spend caring for themselves. It would be a good gesture to offer to fill in for a day, if you are able. Perhaps, one can consider asking if you can hire a private nurse for a few hours or on the weekend. Whatever you are able to do to give the caregiver a break will be much appreciated. Caregivers may feel unloved. Sometimes the caregiver might just need a listening ear to talk through what they are experiencing. The State can and should do more for those who are caregivers and working full-time. The State should train a cohort of patient care assistants and facilitate these individuals to assist the elderly for a few hours daily. This elder assistance happens in developed societies and if Jamaica is desirous of becoming a developed society, then this is one area of concern that urgently needs to be looked into. They should be able to get time off from work with pay for medical appointments especially for their parents. Many caregivers work and therefore employers can assist by facilitating work- from- home where possible or adjust working hours for the caregiver. Without proper support, caregiving can feel lonely and isolating. One can source and share information of support to those who are caregivers. Did you know that one in five caregivers experience significant financial strain as a result of providing care? Many times they are also responsible for their loved one’s healthcare costs. One can assist with something specific like a car payment or rent for a month or two, or something more general like monthly utility bills or a short time in order to give the caregiver some breathing room. Consider asking your loved one where the costs add up the most, so you can be sure your gift is making the most impact. Another meaningful and impacting way of showing support is by offering to cover prescription expenses for a month or two. In some instances starting A GoFundMe might be useful in order to offset the medical/ financial expenses. One can also offer to pay for spa services to reinvigorate the caregiver; services such as massage, barbering/ hairdressing, mani/pedicure. Caregiver burnt out is real, take it from me. Oftentimes the caregiver will not ask, one has to be perceptive and offer the assistance. As simple as adding some credit to the caregiver's cellular phone or paying for counseling services regarding mental health support are avenues those who wish to give support can explore. One can offer to purchase groceries. In some example the caregiver may wish to go to church and as such why not offer to do a few hours while the caregiver attends to his/her spirituality. There are so many ways in which one can demonstrate support and love. Finally, we cannot discount the power of prayer. In reaching out to caregivers one can pray for them. Our churches can do more especially if the individual being cared for was a faithful member. Churches through their Boards can commit to pay for nursing care for a few hours or perhaps a day or make a financial contribution towards the care of that member. It takes cash to care. It is rather sad that many churches fall short in this ministry. Thoughtful Samaritans. I recall sometime ago two impactful experiences involving persons I met during my professional life. The first was a retired principal who offered to come by the house and parent-sit in order to give me some time for myself while the other was a home- school parent who offered to do my parents laundry. At first I was totally shocked. These offers were acts of selflessness and are excellent and meaningful examples of giving support. Caregiving is not a walk in the park or an afternoon stroll, it is daunting and arduous. The caregiver is always giving of him/herself. You cannot pour from an empty vessel. The caregiver needs to replenish in order to continue. Caregivers are not super-humans; they need love and support. To all those individuals who are in the special category of being a caregiver I salute you. Thank you! In the words of Tia Walker, to care for those who once cared for us is one of the highest honours. Wayne Campbell is an educator and social commentator with an interest in development policies as they affect culture and or gender issues. waykam@yahoo.com @WayneCamo © #caregiving #caregivers