While every situation is different, research finds many family caregivers face similar struggles. These include the following, according to the AARP/NAC:

• Lack of Time for Self-Care – On average, caregivers provide care 24 hours a week for four and a half years. But 1 in 4 put in 41 or more hours per week — the equivalent of a full-time job. This time is often spent supporting activities of daily living like getting in and out of bed, getting dressed, going to and from the toilet, showering, feeding, and dealing with incontinence. There’s also the need to communicate with healthcare professionals, advocate for your loved one, and manage medical, nursing, financial, and legal tasks. All of this work takes away time to care for yourself.

• Complex Medical Needs – Many caregivers take on significant medical and nursing tasks like injections, tube feedings, and catheter and colostomy care. Most say they have no choice but to do it, with little to no training.

• Inadequate Support – The AARP/NAC report found that 7 in 10 caregivers have no paid help, and many struggle to find affordable services. Navigating a fragmented and confusing healthcare system — often without acknowledgment of your role — can be frustrating and expensive, as researchers note in the book Families Caring for an Aging America. According to a review published in April 2016 in The Gerontologist, many caregivers said one key reason they struggled to prioritize self-care was a lack of formal support. They wanted help with daily needs, symptom management, and coordinating care.

• Employment Issues – Most working caregivers say they have to take time off from their jobs to meet their loved one’s needs, but they do not have paid family leave at their workplace. One in ten have to quit work or retire early and, as a result, experience increasing financial stressors.

• Financial and Economic Strain – About 3 in 10 caregivers have stopped saving, and 1 in 4 have taken on more debt — effects that could have even more significant repercussions over years of providing care. Most say an income tax credit or program to pay caregivers would help.

• Loneliness – Caregiving can be isolating, especially if you are living with your care recipient, they have high needs, or you’re in a rural area. Many people say caregiving can be a rewarding and meaningful experience, but 2 in 10 family caregivers also say they feel alone.

• Loss of Identity – Caregiving can also eat up time and mental space once devoted to your own needs, interests, and social life. A study of family caregivers for people with advanced cancer, published in Supportive Care in Cancer shows caregivers can also lose their sense of self, so much so it’s hard for them to think or talk about anything other than caregiving.

• Heavy Emotions – Caregivers may experience complicated feelings about their relationship with their care recipient, such as resentment over the burden of caregiving, guilt over feeling that way toward a loved one, and worry and grief over their worsening health status. On top of this, they also have to help their care recipient manage their emotions and extend grace when anger and conflict arise.

Read the Complete Article Series

If you relate to this article, we encourage you to read the rest of this series: Part 2 – Recognizing Caregiving Burnout and Part 3: Finding Time for Self-Care When Caregiving.

Resources for Caregivers

• AARP Caregiving Forum Chat with fellow caregivers for older adults.
• Alzheimer’s Association Join a support group and get advice on caring for a loved one with Alzheimer’s disease on community message boards.
• Family Caregiver Alliance Support Groups Join online support groups for caregivers, young adult caregivers, or caregivers in the LGBTQ+ community.
• Caregiver Action Network Forum Ask about how to deal with medical professionals and care for loved ones with mental health issues, Alzheimer’s disease, Huntington’s disease, Parkinson’s disease, or COPD.
• Veterans Affairs Caregiver Support Program Learn how to support veterans and their loved ones, or call its Caregiver Support Line at 855-260-3274.
• FCA Family Care Navigator Find caregiving support services in your state, such as government health and disability programs and disease-specific organizations.
• Medicare.gov Access resources for caregivers who are supporting someone on Medicare.
• Well Spouse Association Join a support group and get resources for caregivers caring for chronically ill or disabled partners.

SOURCE: EverydayHealth.com, article shared with permission