Help with Caregiving Stress

If you’ve been a family caregiver, you know all about the caregiving stress. It’s a job few people would get excited about. You may have to provide help for 20-100+ hours a week, often with no pay. And you may need physical strength for heavy lifting and a strong stomach to handle bodily fluids. Plus, it helps if you have an upbeat attitude, an ability to thrive with limited sleep, and excellent organizational skills.

Most importantly, you must be willing to put all or much of your own life aside for months or even years. For instance, a 2019 AARP survey found that:

• Caregivers spend an average of 23.7 hours/week providing care, with 21% providing care for more than 41 hours/week.
• The average caregiving duration was 4.5 years, although 29% provided care for 5+ years.

Although this sounds daunting, millions take this job, often with little notice, as they become family caregivers. Being a family caregiver is very stressful, often isolating and overwhelming, and can go on for years. How can you handle caregiving stress?

Many caregivers don’t feel qualified for the role.

Caregiving is not only about making dinner and doing laundry. In fact, a 2019 AARP survey found that 58% of caregivers perform medical/nursing tasks, such as injections, tube feedings, and catheters.

Importantly, more than 50% of caregivers who responded to the Genworth Beyond Dollars Study of 2018 say they don’t feel qualified for the role of caregiver. They feel like they don’t have a firm foundation for decision making and face a “sea of confusion” when caring for aging loved ones.

The many stressors of caregiving.

Taking care of a loved one with a serious illness or injury is overwhelming and stressful. And it can leave little time for other things, including work, family obligations, and caring for your own health.

Family caregivers who responded to a 2019 AARP survey shared the following struggles and concerns:

• Caregivers reported the following physical and emotional difficulties:
  • 17% reported high levels of physical strain.
  • 36% felt emotionally stressed.
  • 18% experienced high financial strain.
  • 21% felt alone.
  • 23% struggled to take care of their own health.
  • 23% felt caregiving made their own health worse.
• Caregivers reported they could use more help and input from medical professionals:
  • 71% didn’t have adequate conversations with doctors about the needs of the patient.
  • 87% felt doctors didn’t talk to them about their own needs.
  • 31% had at least some difficulty coordinating care.
  • 62% wanted more information or help on caregiving topics, including how to keep their loved one safe and how to manage their own stress.
• 27% had trouble finding affordable help.
• 61% experienced at least 1 impact or change to their employment, such as cutting back on hours or taking a leave of absence.

Caregiving stress can cause physical and emotional harm. 

Caregivers face a myriad of physical and emotional health issues. Research shows:

• Highly stressed caregivers with their own chronic illness have a 63% higher death rate than their non-caregiving peers.
• Caregivers have higher levels of stress than non-caregivers. They also describe feeling frustrated, angry, drained, guilty or helpless as a result of providing care.
• Caregivers had a 23% higher level of stress hormones, compared to non-caregivers.
  • Over time, these stress hormones can lead to high blood pressure and increased glucose levels, which can increase the risk of hypertension and diabetes.
• Caregivers had a 15% lower level of antibody responses, compared to non-caregivers.
  • Poor immune response can make people more prone to infections, such as the flu.

Additionally, in a 2018 Genworth Beyond Dollars Study, caregivers reported that caregiving caused negative emotional impacts:

• 41% reported depression, mood swings and resentment.
• 53% felt a negative impact on their stress level.
• 46% felt a negative impact on their health and wellbeing.
• 50% reported having less time for their spouse/partner, children and themselves.

For a complete list of possible harms from caregiving, read Impact of Caregiving on Caregiver Mental and Emotional Health on Caregiver.org.

Caregiving can take a financial toll.

For many, the stress of caregiving includes financial concerns. Not only are caregivers spending their own money on their loved one’s care, but many are also earning less as they cut back on work hours and miss career opportunities in order to accommodate their caregiving duties.

Results of the 2018 Genworth Beyond Dollars Study show widespread concern regarding finances. Respondents report:

• 63% paid for care out of their own savings/retirement funds.
• 48% reduced their quality of living.
• 42% reduced contributions to their own savings.
• 46% worked fewer hours.
• 30% missed career opportunities.
• 20% missed 10 or more hours of work per week.

How can you reduce your caregiving stress? 

Fortunately, there are things you can do to ease the stress of caregiving. Consider these suggestions:

Don’t do it alone.

• Get as much help as possible – both paid and unpaid. Don’t try to do this by yourself!
• Don’t isolate yourself, which can be depressing. Instead, reach out to your friends and family via email or phone. Ask friends to stop by for a visit. Reach out to your Church or Temple to see if they have a program for visiting ill members.
• Consider getting help with “non-caregiving” tasks to ease your daily burden. For example, let friends help with meal preparation, grocery shopping, errands, childcare, etc.
• Join a support group, either in person or virtually, to connect with other caregivers in the same situation. As the saying goes – misery loves company. You’ll likely find that reaching out to people in the same boat is comforting and you may even learn some tips for patient care and stress reduction. However, if you find that a group is causing you stress, don’t hesitate to drop out!

Practice self-care.

It’s vital to practice self-care. Certainly, if you don’t take care of yourself, you won’t be able to help your loved one. Pay attention to both your physical and emotional health.

• Continue to see your doctors for your own physical health. Importantly, do not ignore your symptoms. You’ll be no help to your loved one if you are bedridden yourself.
• Make sleep a priority – aim for 8 hours/night. Take naps if needed.
• Eat healthfully, drink plenty of water and try to exercise regularly.
• Find a way to de-stress every day. Even if you cannot regularly leave the house, make yourself a priority for a small part of each day. Take a bath, meditate, exercise, watch TV, read, listen to music, or participate in any other activity you find relaxing and replenishing.
• A social worker or therapist can help you deal with the emotional stresses of caregiving – including depression, anxiety, and loneliness. Find a therapist by asking your doctor for recommendations and/or by reaching out to your community for suggestions. Additionally, you can ask your doctor about the availability of hospital based clinical social workers who may provide free counseling services (ask about costs upfront).
• Try to laugh every day. But don’t be afraid of a good cry. Both can relieve stress.

Try to maintain a positive outlook.

Although it can be difficult to maintain a positive attitude when you feel overwhelmed and/or sad, it’s worth the effort to try your best to be positive. To reduce caregiving stress, consider these suggestions:

• Try to be adaptable and stay positive. “Going with the flow” will help you and your loved one stay relaxed. Focus on how you can adjust to the situation in a positive, constructive way. And consider the importance of situations that cause you aggravation – putting an issue in perspective may help you go with the flow.
• When situations are completely out of your control, focus on how you react. Try to find solutions that can help make problems a little less stressful.
• Set realistic goals and realize you cannot do everything at once. Prioritize, set practical goals, and do your best to achieve them. Importantly, take things one day at a time – it can feel overwhelming to worry about upcoming days, weeks, or months.

Be an engaged member of the medical team.

Certainly, it’s hard to manage a serious illness or injury. There is a lot of medical information to learn and keep track of, difficult decisions to make, complicated medication routines to manage, and more.

To reduce the stress associated with the management of your loved one’s illness, follow these suggestions:

• Stay organized and on top of all medical issues. Firstly, take detailed notes at all medical appointments. And bring them with you to share with your medical team at each appointment. Additionally, bring copies of test results and medication lists (including over the counter drugs) to all appointments.
• Realize that you need to coordinate care between all medical professionals. For instance, do not assume they have access to, or have read, detailed reports from other doctors on your team.
• Ask as many questions as you need until you are sure you understand what the doctors, nurses and other staff tell you. And don’t be afraid to ask a doctor or nurse to repeat or rephrase a response.
• Ask your health insurer to assign you a case manager, who can be very helpful to you as you navigate the medical world.
• Before a hospital discharge, make sure you clearly understand all instructions. Moreover, if difficult or unfamiliar tasks are necessary (e.g., injections), practice at the hospital with a nurse until you feel confident. Additionally, if the patient needs home health equipment, ask your discharge planner to help you arrange for insurance coverage and delivery.

Learn more about managing healthcare.

For more tips on managing an illness or injury, read these blog posts:

• Understanding Medical Information Is Harder Than Most Realize.
• 10 Tips for a Better Medical Appointment.
• Can you Trust Medical Information Online?
• Can You Trust Advice from Other Patients?
• 10 Tips to Communicate Better with Doctors.
• Tips to Take Medication as Prescribed.
• The Importance of Shared Decision Making.

Consider respite care.

Respite care can give you a break from your caregiving responsibilities. With respite care, a friend, family member, nurse, or trained caregiver takes over the care of your loved one. Your loved one can receive respite care at home, in an adult day center, or in a short-term residential care facility. Importantly, respite care can last for an hour, a day, or days at a time.

The benefits include:

• You get time to relax and rejuvenate.
• You can take care of your own needs.
• Your loved one experiences a change of pace.
• You can return to your role with more energy and less resentment.

Unfortunately, many caregivers don’t take advantage of respite care, despite the benefits. For instance, in the 2019 AARP survey, only 14% of caregivers reported using respite care.

Money considerations.

If you don’t rely on a friend or family member, you will have to pay for professional providers.

Original Medicare Part A covers respite care, but only when it is a part of the recipient’s hospice care. However, Medicare only covers respite care received in a Medicare-approved inpatient facility such as a hospice, hospital, or nursing home. And it only pays for 5 days at a time.

Importantly, Medicare Advantage plans may cover respite care. Therefore, you should talk to your carrier to learn about coverage options and restrictions.

Address financial concerns.

You might be able to be paid for your caregiving services. For example, some states allow the hiring of a family member to provide care. Since eligibility, benefits, coverage and rules vary, research your options. For detailed information, read Can You Get Paid As A Family Caregiver?

Additionally, you might qualify for financial assistance from one or more organizations dedicated to helping patients with financial hardships. Learn about organizations that provide help with medication costs and other medical related expenses in our Resource Center.

The ZaggoCare System can reduce your stress!

Certainly, there are many things to learn and keep track of when managing a serious medical condition. Fortunately, the ZaggoCare System makes it all a bit easier to manage.

Our guidebook is filled with tips that help you at every step of the journey. And our organizational tools make it easy to keep your medical information organized and at your fingertips. Simply put, it can help you be an engaged, empowered member of your loved ones’ medical team. Order one today!