Providing hospice care takes work. That work is many things, and it’s something different to each individual caregiver. Often, the caregiver is a family member, taking on the primary responsibility for a loved one’s care. Family members face unique emotional and practical challenges when providing hospice care, and it’s rarely easy; nearly all of us that end up accepting the role of caregiver will—at some point—experience more struggle than success when handling those responsibilities.
That struggle may feel like we are just inherently incapable of meeting the challenge, that we lack the strength or competency. But feeling overwhelmed, burned out, and plumb out of resources is not a sign of weakness. It’s a reminder of how important the work is.
Understanding the Role of a Hospice Caregiver
Working as a caregiver can prove incredibly challenging, despite many of the tasks involved being very routine and low-intensity on their own. Taken together, though, it’s a collection of responsibilities unsurpassed by almost any other.
What hospice care looks like for a given individual will obviously vary based on their circumstances, the patient’s condition, and level of support needs. The primary caregiver, often a family member, may take on the majority of responsibilities, coordinating with hospice teams and providing care at home. It could look like intermittent visits to deliver groceries, help with housekeeping tasks, and chauffeuring the individual to appointments. It could be around-the-clock care for a bed-ridden hospice patient.
Most hospice patients receive care at home rather than in a facility, but hospice care can also be provided in nursing homes and hospitals, allowing care to be tailored to the patient’s environment. It could be anything in between, and it might even fluctuate or change over time.
Whatever the specifics, as a care provider, you’ll be doing or experiencing some amount of each of the following:
- Performing manual, physically demanding labor
- Providing personal care and symptom management
- Emotional exertion as you serve as a sense of stability to the person you care for
- Added mental load, decision fatigue, and general psychological exhaustion
- Increased logistical difficulty and scheduling complexity
- Financial strain due to hospice related costs, reduced available income, or both
- An acute awareness of any relevant skills gap (between what patient care calls for, and what you currently have the training for)
- Extended periods with few (if any) breaks or days off
Family caregiving often involves providing care for a hospice patient with a life limiting illness, such as a chronic illness or terminal illness. The responsibilities of providing care can be physically and emotionally demanding, especially as the illness progresses.
Again, some hospice needs begin rather abruptly, in response to dramatic shifts in physical or mental health. Other arrangements may be less all-consuming, especially at the start. But even then, it’s incredibly common for individuals receiving care to progressively lose independence over time.
As the patient’s condition changes, the focus may shift from curative treatment to comfort care, with an emphasis on quality of life and end of life support. This transition often involves important decisions about life sustaining treatments, such as whether to continue aggressive interventions or focus solely on symptom management.
Hospice care typically begins when treatments or curative treatment for the illness are no longer effective or desired, and the primary focus becomes symptom management and supporting the patient’s quality of life.
This is all to say that, whatever the initial level of intensity or commitment, the majority of cases experience an increase in care needs, not a decrease, making an already demanding responsibility even harder to perform.
The Biggest Challenges Hospice Caregivers Face
No two hospice patients, caregivers, or circumstances are identical, and what’s easy for one might be a major hurdle for the other. However, most family caregivers encounter similar challenges when providing hospice care. There are a few areas of heavy overlap in what those facilitating hospice for loved ones experience, including the need for caregiver support, assistance with daily living, and access to various services such as respite care.
Other family members may also be called upon to help with daily living tasks or provide respite care, and some families may hire paid caregivers for support, highlighting the importance of a strong support network for families. National organizations such as the Family Caregiver Alliance, CaringInfo, and the Alzheimer’s Association provide educational materials and online communities for caregivers.
Strict Resource Limitations
If you’re not currently filling the role of caregiver, it might be tempting to assume that the only type of resource that really matters are those that classify as liquid assets. And while having ample finances can do wonders to ease burdens, you might find yourself hamstrung by other deficits before you run out of available cash.
Whether it’s vehicles, supplies, equipment and hardware (from wheelchairs to necessary digital devices or medical equipment), available space, or even simply available time and labor hours (a given person can only do so much in a given day), it’s entirely possible to run into hard limits on what needs can be met simply by exhausting the assets currently at your disposal.
Having enough capital can certainly enable you to remedy some or all of these other shortages, but that’s a solution that requires additional time, mental energy, and effort, all of which are also assets whose supplies are finite.
Lack of Caregiver Support/Relief
This is a major component when determining what assets you have. Beyond what you bring to the table personally, you will ideally have access to a support network of friends, family, and community resources to provide external assistance to some degree.
All too often, though, caregivers are forced to solve problems in near-total isolation.
Full-time caregivers are hit the hardest by this challenge. In the absence of friends and family who can fill in for them, and without the necessary capital to fund professional care, they face a battle of psychological attrition they aren’t likely to win.
A hospice team, including hospice staff, hospice nurses, and social workers, can provide essential support and relief for caregivers. Hospice nurses are available around the clock to address daily patient needs, offer practical advice, and respond to emergencies. Respite care offers short breaks for caregivers, which can include short-term inpatient stays in a hospice-certified facility for up to five consecutive days, providing much-needed relief.
No caregiver can provide continuous, 24/7 supervision and care indefinitely, and they shouldn’t be expected to.
Insufficient Training
We touched on this briefly earlier on, but being a caregiver can frequently put you in scenarios where the importance of legitimate medical training ranges anywhere from “extremely helpful” to “mission critical.” Depending on the skill in question, it might be something a brief class can address, or it might be something considerably more involved.
Regardless of specifics, there’s a high likelihood in most cases that:
- The caregiver is not trained on the skill in question
- Learning the skill will require an investment of time and/or money
- Said time and money are in less than ample supply by the time the skill proves necessary
Non-Financial, Figurative “Debt”
The challenges and struggles listed above very often lead to some predictable results. When a caregiver is faced with severe resource limitations, minimal outside support, a lack of necessary training, and ever increasing care responsibilities, most do what they feel is required in the moment. That is to say, they force themselves to push through regardless.
It’s the kind of strategy we’d all praise as “dedicated” and “resilient” normally. But like ignoring the status lights on a car’s dashboard, there’s only so far you can keep driving before the unheeded warnings develop into serious problems.
Humans can be surprisingly persistent creatures when they choose to be. But whenever we push past normal operational limits, we incur some form of “cost,” and each of those bills will eventually come due.
Sleep deprivation is an easy example; the “sleep debt” we accumulate during extended periods of insufficient sleep or poor quality rest can compound risk factors for a host of medical and mental health concerns.
Physical labor is similarly subject to the costs of overexertion, repetitive motion, and fatigue-related complications.
Even something as simple as our ability to experience empathy can be depleted over time. In clinical terms, “compassion fatigue” is how we refer to the phenomenon of increased insensitivity toward the suffering of others when we deprioritize our own needs for too long.
To put it more poetically, our efforts to shoulder the burden and care for our loved one to the best of our ability can lead us to exhaust our own physical, emotional, and psychological reserves. Pushing beyond those limits seems selfless at first, but once we’re in the red, we’re committing ourselves to cover the tab with our own health and well-being.
Emotional support, including counseling, spiritual care, and group therapy, is a core component of hospice care for caregivers dealing with stress and anxiety. Counseling services in hospice include one-on-one and family counseling sessions, providing a safe space for caregivers to express feelings and manage fears.
Additionally, grief support and counseling are offered to family members for up to 13 months following the loss of a loved one in hospice.
Caring for the Caregiver
At the end of the day, the caregiver’s wellbeing is critical to the patient’s wellbeing. It seems selfless at first to ignore our own needs in favor of prioritizing the patient’s needs and wishes. But while that may be necessary in short bursts, it’s not a wise long-term strategy—for us, or for them.
Support for caregivers is available through respite care and hospice services, which are provided by medical professionals and healthcare providers. These services focus on medical care, symptom management, and improving quality of life for patients with serious illnesses.
Hospice providers can offer practical tips and support for caregivers, helping them manage the challenges of in home care and end of life care. The hospice provider acts as the central point of contact, coordinating care, managing medical equipment, and supporting families throughout the end-of-life process.
Resources and support can be accessed through public and private programs, including Medicare, and some services may require pay or be covered by insurance. Private programs may offer additional personalized options for hospice and palliative care.
The Family Caregiver Alliance is a valuable organization offering education, resources, and advocacy for family caregivers, helping to improve caregiver quality of life and providing information on caregiving issues and public policy.
We at Inhomecare.com hope to help you and your loved ones. Visit our site and take the first step toward a safer, more independent future today!
