Here’s a job listing few people would get excited about: 20-100+ hours a week with no pay. Applicant must put the needs of others first, have physical strength for heavy lifting, a strong stomach to handle bodily fluids, limited or no desire to get outside, an upbeat attitude, ability to thrive with limited sleep, excellent organizational skills, and a willingness to put their own lives aside for months or even 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 the stress of caregiving?
Many caregivers don’t feel qualified for the role.
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 stress of caregiving.
Taking care of a loved one dealing with an illness or injury is overwhelming and stressful. In a 2019 AARP survey, caregivers shared their struggles and concerns related to caregiver:
- Caregiving created:
- 17% – high level of physical strain
- 36% – emotional stress
- 18% – financial strain
- 23% – Felt caregiving made their own health worse.
- 58% – Performed medical/nursing tasks, such as injections, tube feedings, and catheters.
- 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.
- 62% – Wanted more information or help on caregiving topics, including how to keep their loved one safe and how to manage their own stress.
- 25% – Found it very difficult to get affordable service to help with care; 33% said it was moderately difficult.
- 60% – Made workplace changes such as cutting back on hours or taking a leave of absence.
- 61% – Had no paid family leave through their jobs.
Caregivers report the impact of the stress of caregiving.
According to the 2018 Genworth Beyond Dollars Study, caregivers reported that caregiving caused negative emotional impacts:
- 41% reported depression, mood swings and resentment.
- 53% reported a negative impact on their stress level.
- 46% reported a negative impacted their health and wellbeing.
- 50% reported having less time for their spouse/partner, children and themselves.
Caregiving impacts health.
Additionally, caregivers face a myriad of health issues, including:
- Research has found that 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.
For a more complete list of the possible physical harm from caregiving, visit Caregiver.org: Impact of Caregiving on Caregiver Mental and Emotional Health.
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, 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 stress related to caregiving?
Don’t go 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.
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. This includes taking care of both your physical and emotional needs.
- Take care of your own physical health! Continue to see your doctors for your own physical health and do not ignore symptoms. You’ll be no help to your loved one if you are bedridden yourself.
- 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 might be able to help you for no charge (ask about costs upfront).
- 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.
- 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!
- Try to laugh every day. But don’t be afraid of a good cry. Both can relieve stress.
Be an engaged member of the medical team.
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 your stress associated with the management of their 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. 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. Importantly, 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. 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.
- Easy Steps to Take Medication as Prescribed.
- Keeping Your Medical Information Organized is Easier than You Think.
- The Importance of Shared Decision Making.
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 more information, read my blog post 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 on Zaggo’s website.
NOTE: I updated this post on 4-6-21.