I had the privilege of presenting on “Caregiving and Relationships” at the 4thAnnual PURA Syndrome Conference in Boston, MA, this summer. To kick off the presentation, I asked the parents and caregivers in the room to tell me about some of the duties and responsibilities involved in caregiving. One parent stated, “it might be easier to tell you what we DON’T do.”
If you are a caregiver, you can SO relate to the words of this parent. There are few roles that can so unexpectedly and disruptively alter the current state of one’s life than the role of caregiver. Suddenly, and often unexpectedly, you are responsible for the daily care and needs of another. Life as you know it changes, and you feel the burden of care upon you. The technical definition of caregiving is the activity of regularly looking after a child, or a sick, elderly, or disabled person.
The responsibilities and duties of caregiving are both demanding and diverse. Here, I am highlighting the top NINE duties of a caregiver:
1. Emotional Support and Companionship
Caregivers are often the primary source of emotional support for the care recipient, and in some cases, the primary caregiver may be the ONLY person attending to the emotional needs of the care recipient or providing regular companionship.
2. Activities of Daily Living
Caregivers assist with activities of daily living such as bathing, grooming, dressing, toileting, and meals.
3. Physical Assistance:
If a care recipient has limited mobility, caregivers will often provide physical assistance to transfer in and out of bed, up and down from chairs, in and out of vehicles, and in and out of the bath or shower. Care recipients may also need assistance walking or navigating their environment.
4. Medical Care and Assistance
Caregivers must have detailed knowledge about the care recipient’s medical condition and must help to arrange and coordinate medical appointments, all the while serving as a liaison between different specialists and providers. Medical needs such as medication and treatment administration, as well as therapeutic activities are typical and often daily activities of a caregiver.
5. Financial Support
Many caregivers provide substantial financial support to a care recipient. Some caregivers may receive government assistance or be reimbursed by insurance for certain medical expenses; however even with assistance, it is expensive to serve as a caregiver. According to the U.S. Department of Agriculture, it will take roughly $240,000 to raise a child from birth to age 18….for a special needs child, those expenses can quadruple. It is estimated that the cost of caring for a person with intellectual disabilities can cost more than $2.3 million over the course of their lifetime. Costs for medical services, adaptive equipment, communication devices, special foods, clothing, transportation costs, paid caregivers, nannies, and babysitters, therapy, and accessible housing and transportation add up quickly, placing a great deal of stress on many caregivers. There are also many special considerations when planning for the financial future of the care recipient.
6. Housing and Housekeeping
Caregivers are responsible for arranging housing, whether in their own home or coordinating care elsewhere, in a group home or assisted living facility. Most caregivers will also shoulder the bulk of the responsibilities around the house – everything from cleaning, decluttering, organizing, lawn care, general maintenance and repairs, etc.
7. Preparing Meals
Caregivers are responsible for not only preparing meals, which frequently have certain restrictions or requirements, but also assisting care recipients with meals depending on ability.
It is very common for caregivers to be the primary source of transportation for the care recipient to all activities, appointments, and therapy. Sometimes accommodations need to be made to vehicles in order to provide transportation which can be quite costly.
It may not be the first thing you think of when you think of caregiver responsibilities, but if you ask any caregiver, you will discover that one of their primary responsibilities is advocacy. Whether a caregiver is advocating for the best medical treatment or therapy, advocating for insurance reimbursement, advocating in an IEP meeting, advocating for quality end-of-life care, advocating for increased government support, advocating for greater accessibility and inclusion, or advocating for social justice and reform, you will find caregivers making an impact on our world and in our communities on a daily basis.
So, the parent who spoke up at the PURA Syndrome Conference is absolutely correct. The roles and responsibilities of caregivers are so vast and varied that it would take much less time to tell you what they DO NOT do. The job is 24/7, 365 days per year. There is little to no vacation or sick time, and retirement….forget about it. I don’t want o make caregiving seem horrible; as a matter of fact, great joy and meaning can be derived in this work, but it does not make it any less challenging, demanding, and at time incredibly stressful.
If you know a caregiver, take a moment to validate and express appreciation for their daily selflessness. Better yet, reach out and offer a helping hand, a listening ear, or a cup of coffee. You have no idea how such a small gesture can bring a sense of normalcy to a caregiver’s life and soothe a weary soul.
Tell me what responsibilities you assume as a caregiver? What duties are most challenging and which bring you great joy? How do you cope with the demands of caregiving?