The Biggest Challenges Faced By Caregivers - National Association For Continence (2024)

The universal and simple meaning of caregiving is to care for another person, managing their physical, emotional, spiritual, and practical needs while managing their own life, needs, family, and career.

It is usually someone the care recipient knows well enough that they’ve called on to help them with their healthcare, like giving them a ride to a doctor’s office, cleaning, cooking, grocery shopping, or reading. The caregiving role can be simple help with tasks every now and then, or it can be all-encompassing; 24/7, 365 days a year. Once a loved one takes on the role of caregiver, it can be difficult to set boundaries and the extra time, attention, and financial burdens can often be overlooked or taken for granted.

Aside from assisting with daily living and lifestyle habits, a caregiver, be it primary or secondary, is central to the care process. They closely monitor and observe the health of the individual they care for, noting any changes in symptoms, medication side effects, or overall well-being. The information is essential for healthcare providers to make accurate diagnoses, determine treatment plans, and assess the effectiveness of interventions.

However, caregivers are so devoted to the person they care for that they forget their health and psychosocial needs. It is imperative to help them realize that they should look after themselves so that they remain attentive and alert to the person under their care. A caregiver not looking after themselves is not a good caregiver for the person they’re looking after. It’s no good if something happens to them. Hence, it’s important for caregivers to keep up with their own healthcare needs, including seeing their doctor regularly and doing things that can help to keep their mental state calm. Caregivers need regular breaks in order for them to recharge.

Another pertinent point is to recognize that caregiving does not always come naturally for many people. While being a child to an aging parent or wife to a husband is fundamental in a caregiving relationship, being a caregiver requires a role change and can be a transformative process.

It’s an aspect that can weigh heavily on caregivers’ shoulders. In considering the resources, the caregiving role comes with a significant opportunity cost in lost earnings borne by the carer and, subsequently, the family, measured as a total household income. This study[1] showed a lower employment participation rate for caregivers, about 20% lower than for non-carers. For carers who are employed, they tend to choose more part-time employment opportunities and, at times, flexible work arrangements. If the care recipients cannot perform essential activities of daily living, which often may lead to unsafe conditions, the carer is often left with no choice but to leave their job.

There’s always the consideration of hiring paid caregiving services while continuing full-time employment. Still, these are added expenses to medical bills and medications, which can pile up quicker than expected, especially if there are multiple prescriptions to manage.

The financial challenges of caregiving don’t stop with the help. Home modifications are often necessary to ensure a safe and accessible environment for the care recipient, ensuring their specific needs are accommodated and making daily activities more manageable. These include grab bars or handrails in bathrooms, ramps, and widened hallways so that the care recipients using walkers or wheelchairs are better supported to move around the home easily. Additionally, other modifications like non-slip flooring, improved lighting, or removing tripping hazards can help prevent accidents and falls[2], reducing the risk of injuries and additional medical bills.

Ways to manage the financial burdens of caregiving.

The financial burden can be overwhelming, but there are ways to alleviate some of that stress. First, explore the available financial assistance programs. Government-funded programs like Medicaid, Medicare, and the Veterans Administration Aid and Attendance Pension can help offset the cost of care. Some states have been approved to offer Structured Family Caregiving[3] where the family caregiver can be paid and receive additional support, including training.

Another avenue to consider is taking advantage of tax credits such as the Credit for Caring Act[4] specifically designed for caregivers. The IRS also offers other tax credits to help cover unreimbursed medical bills, but there are specific criteria to meet[5], such as providing care for a dependent who cannot care for themselves. Before submitting a claim for any of these credits or deductions, outline all the costs, and if unsure, get someone to help when submitting the forms.

Finally, explore enlisting support from grassroots community-based organizations[6] to get volunteers or a reduced-fee service if the care recipient qualifies. Your loved one may not want a stranger in the house, but you can start by staying with them the first time the caregiver arrives until a routine and familiarity are established.

While the financials of caregiving can be a strain, it’s important to remember that resources and options are available to help ease the burden, allowing you to focus and enjoy the caregiving process.

Caregiving is no walk in the park. And being on call 24 hours a day leaves little to no time for themselves. Caregivers often grapple with a whirlwind of emotions that can affect their well-being.

One common feeling is stress due to caregiving’s emotional and physical strain. The responsibilities can pile up, and it can feel like there’s never enough time or energy to get everything done. It is, therefore, not a surprise that they are less likely to engage in preventive health behaviors than non-caregivers[7]. Prolonged stress puts caregivers at risk for poor health and increased mortality from coronary heart disease and stroke, particularly under high-stress conditions. Typical signs of caregiver stress are anger, helplessness, weight loss, or feelings of sadness[8].

And let’s remember burnout which can slowly drain a caregiver’s energy and enthusiasm. Caregivers can find themselves physically and emotionally exhausted, feeling like they’re running on empty.

Another common feeling is guilt. Caregivers may feel guilty for taking time for themselves, thinking they should be doing more or better for their loved ones. It’s that nagging voice in their heads that makes them question if they’re doing enough, even when they’re already going above and beyond.

But here’s the thing: it’s crucial for caregivers to recognize and address these emotions. Taking care of their emotional well-being is just as important as caring for their loved ones.

One way to manage these emotions is by seeking support. Talking to a therapist or joining a support group can be incredibly beneficial. It provides a safe space to express feelings, gain perspective, and learn coping strategies from others who genuinely understand the caregiving journey.

Taking breaks from caring is another way. One of the best times to do this is when the care recipient rests or engages in an activity in a community setting. While momentarily, these quiet moments can be therapeutic.

Respite care, which means the care recipient is being looked after by someone else, is a way to prioritize self-care. It can be for a few hours at a time, or for an entire day so the caregiver has some personal time, engaging in activities that bring joy and relaxation, stopping them from becoming exhausted and maintaining a healthier state of mind. It can be as simple as spending time outdoors, enjoying a soothing bubble bath, reading a book, or spending quality time with friends.

One of the typical physical demands[9] is lifting, especially when you’re caring for someone who may have difficulty with mobility. Caregivers may need to lift their loved ones from beds, chairs, or wheelchairs, which can strain the back, arms, and legs.

Assisting with mobility is another physical demand that caregivers face; helping with walking, transferring them from one place to another, or providing support during exercises or therapy sessions. It requires balance, coordination, and a whole lot of patience.

It’s essential to approach these physical tasks with caution and proper lifting techniques to prevent injury. Caregivers must prioritize their safety and the safety of the person they care for. Using proper lifting techniques is essential. That means bending at the knees, keeping their back straight, bringing objects close to their body, avoiding twisting or jerking motions, and using the strength of their legs to lift rather than straining their back.

Sometimes, the physical demands of caregiving can become overwhelming or too much to handle alone. Ask for help from family members or friends, or hire a professional caregiver. It lightens the burden and ensures that the carer and their care recipients are safe during physical tasks.

Caregiving is an all-encompassing role that demands an immense amount of time, which can significantly affect work, social life, and personal time.

Balancing caregiving responsibilities with a job can feel like walking a tightrope, juggling schedules, arranging for coverage when taking time off, reducing work hours, or even temporarily leaving the workforce. All of which can impact career prospects and financial stability.

A caregiver’s social life is also often affected. Caregivers often decline invitations, miss out on gatherings, and feel disconnected from friends and social activities. The reduced social contact can be lonely and emotionally taxing.

And finding personal time becomes a rarity among the daily tasks and responsibilities. Those hobbies, self-care routines, and leisurely moments often get pushed to the back burner.

Recognizing the time management impact due to the time-consuming nature of caregiving is vital. It highlights the need for practical and emotional support to navigate the challenges and find fulfillment in caregiving.

Sharing the tasks of caregiving can be immensely helpful. Enlist the help of family members or friends to help with errands or household chores, or hire professional caregivers to provide respite care. Respite care provides temporary relief while taking a mini-vacation and having me-time.

Prioritizing is vital, as caregiving can be a never-ending list of tasks. Identify the most important tasks and focus on those, letting go of the less critical ones. It’s about balancing and accepting that you can’t do everything.

Caregiving is a choice for some, but for others, it becomes a necessary duty due to certain circ*mstances. For example, spouses who were once equal partners now may find themselves dependent on the other’s care, and parents who used to take care of their children’s every need now require the same care. While caregiving is a noble act, it’s important to recognize that it often puts significant strains on relationships with loved ones, such as spouses and children.

Caregiving can disrupt the usual dynamics of a marriage or partnership, leaving little time for the couple to spend together. The caregiving responsibilities take priority, leading to shifts in familial duties. For instance, when a spouse takes on the caregiving for a parent, the other spouse may suddenly find themselves with additional responsibilities like picking up the children from school or taking care of extra household chores, which can create an imbalance in the relationship. This situation puts the strength of the relationship to the test.

Moreover, when a spouse becomes the caregiver for their partner, the emotional demands and increased stress can make it difficult to nurture and maintain the romantic connection within the marriage. Financial concerns can add to the strain, as the loss of income and increased medical bills can put additional pressure on the marital bond.

Children can also feel neglected or overshadowed in this new dynamic. The time and attention that used to be solely dedicated to them are now divided or redirected toward the care recipient. It can be challenging for children to comprehend these changes and adapt to the new family dynamics. They may experience a sense of loss and feel neglected as they navigate their emotions and adjustments.

To navigate these challenges and build stronger relationships within the family unit, effective and honest communication is crucial. It’s important to openly discuss the strains of caregiving and find ways to support each other. Establishing boundaries is another essential aspect of maintaining healthy relationships while caregiving, such as setting limits on the amount of time dedicated to caregiving, ensuring time for other family members, and most importantly, setting aside personal time.

Lastly, seeking support from the community, joining network groups, or participating in family therapy can provide a safe space to navigate the complexities of caregiving. These resources can offer guidance, reassurance, and the understanding that you are not alone in your caregiving journey.

Recognizing that caregiving is a demanding and often overwhelming role is the start to appreciating the wide range of challenges that the role brings, which can take a toll on their well-being. Discussing these challenges openly can bring awareness to their difficulties and give them the support and resources they need.

Caregivers should always remember that they are not alone in this process. There are several caregiver support services, respite care, counseling therapist, and financial assistance programs that they can explore and tap into as they embark on the journey for help. And, message boards or forums can also help caregivers connect with others who understand, making the process a little easier. A more important aspect is for caregivers to recognize their limitations, practice self-care and ask for help.

[1] Hughes, J. (2007). Caring for Carers: The Financial Strain of Caring. Family Matters, (76), 32–33. https://search.informit.org/doi/10.3316/ielapa.492953294820104

[2] https://www.nia.nih.gov/health/preventing-falls-home-room-room

[3] https://nashp.org/medicaid-structured-family-caregiving-enabling-family-members-to-make-caregiving-their-primary-focus/

[4] https://www.congress.gov/bill/117th-congress/house-bill/3321

[5] https://www.irs.gov/pub/irs-pdf/p502.pdf

[6] https://www.vtvnetwork.org/

[7] 7 Schulz, R., Newsom, J., Mittelmark, M., Burton, L., Hirsch, C., & Jackson, S. (1997). Health effects of caregiving: The Caregiver Health Effects Study: An ancillary study of The Cardiovascular Health Study. Annals of Behavioral Medicine, 19, 11–116.

[8] https://health.gov/myhealthfinder/healthy-living/mental-health-and-relationships/get-support-if-youre-caregiver#the-basics_2

[9] Haney LL. Physical stresses related to the safe handling of residents. Director. 2003 Fall;11(4):151-3. PMID: 14608698.