Caregiving Support – Insights and Resources for Family Caregivers

“My life changed in an instant,” said Rosemarie Rossetti during Guardian’s webinar, The Inaccessibility of Accessibility: Helping family caregivers find the resources they need. When a 7,000-pound tree and live power lines fell on her while she was biking with her husband, Rosemarie was instantly paralyzed from the waist down. Their family was now faced with a challenge they never anticipated.

Finding yourself unexpectedly as a primary caregiver for a loved one can be overwhelming. Stepping into the role of a family caregiver can leave you with many questions. While providing care can be immensely rewarding, the caregiving journey includes many complexities like managing logistics, financial strategizing, and coping with the emotional stress that can lead to caregiver burnout. Access to essential resources and knowing what to look out for can help alleviate the uncertainty of caring for family members and help avoid declines in the caregiver’s own health.

Nearly 51 million Americans are estimated to need caregivers due to serious medical conditions or being elderly.¹ A significant amount of this care is provided by family members and loved ones who are uncompensated for their role as a primary caregiver. The economic impact of caregiving is multi-faceted with both direct and indirect costs. Direct costs encompass time spent caregiving, out-of-pocket expenses, and influences on a caregiver’s decisions around work, including absenteeism and productivity. The direct economic costs for caregivers are estimated at nearly $44 billion through the loss of more than 650,000 jobs and nearly 800,000 caregivers suffering from absenteeism issues at work.² Indirect costs are often related to poor health due to the demands of caregiving and is estimated to be a staggering $221 billion annually.³

A firsthand account from speaker Carol Harnett, President of the Council on Disability Awareness, during Guardian’s webinar, The Inaccessibility of Accessibility: Helping family caregivers find the resources they need shed light on the financial stresses that caregiving can present.

“Here’s what you need to understand about cost. In my case, my parents had saved and saved throughout their lifetimes, but due to my father’s medical situation after suffering a stroke, we had to deplete their savings with $10,000 in monthly expenses. My mother later had a smaller medical incident, which degraded her ability to walk. We found a great rehabilitation facility, but the cost of my father’s situation didn’t leave much for her. We sold our family home, and that’s how we paid for a lot of my mother’s care. Eventually, that money started to run out and I spent $80,000 of my own money to make sure my mother remained in the most positive situation she could be in. Most caregivers are in that situation for five years — some more, some less — and will spend between $10,000-$30,000 per year of their own money.”

The financial strain of caregiving can be immense. Fortunately, there are resources that can help when it’s needed most.

• • • • • • Disability income insurance: Although only applicable if the person receiving care is the policyholder, caregivers should learn if their loved one is covered by disability income insurance. Both short-term disability and long-term disability insurance can provide financial help when faced with an unexpected illness or injury. Policies are offered by many employers, and if the person you’re caregiving for was working at the time of their medical event, they may be covered. Learn more about what disability insurance offers.
          • Medicaid: If the person you’re caring for has a disability or chronic condition, and is eligible for Medicaid, they may qualify for financial assistance, including payments for a caregiver. These programs are sometimes known as “cash and counseling” and vary state by state. There are income and eligibility requirements, but many states allow for self-directed services. Learn more.
          • Veterans’ services: If a veteran is receiving care, they may be eligible for Veteran Directed Home and Community-Based Services, Veterans Pension, and/or the Aid and Attendance benefit, all of which have the potential to provide financial and other supports. Contact the VA Caregiver Support line at 1-855-260-3274 or visit http://www.caregiver.va.gov/ to learn more.
          • Structured Family Caregiving: Some states are approved by the Centers for Medicare and Medicaid Services to offer Structured Family Caregiving. This allows for the family caregiver to be paid and receive additional support. To qualify, the individual in need of care must be eligible for Medicaid, require 24-hour care, and have one or more daily personal care needs, such as using the restroom, dressing, walking, transferring, and eating. Visit Caregivers Homes to learn more.
          • Other associations or networks: In the case of speaker Rosemarie Rossetti from Guardian’s webinar, The Inaccessibility of Accessibility: Helping family caregivers find the resources they need,  she received funding from the National Speakers Association of which she was a member. Reaching out to any associations or networks that you or the person you’re caring for are members of could open doors for financial help that you may not have otherwise considered.

Making sure that your loved one is getting the best, state-of-the-art care can help ensure that they’ll be in the most comfortable situation and have the best chance to take positive steps towards adapting to their new lifestyle. Advocating is incredibly important.

While Rosemarie Rossetti was in the hospital recovering from a sudden spinal cord injury, she received excellent care. When an early discharge was proposed, she asked the doctor to reconsider and train both her and her prospective caregiver (her husband) for another week so they would be better prepared for the road ahead. The doctor agreed. They worked with Rosemarie’s insurance company to allow for a week of intensive training before she returned home with all the durable medical equipment that was now needed for her daily activities and her wheelchair.

Here are four tips to help effectively advocate as a caregiver.

1. 1. 1. 1. 1. 1. Be observational: It’s especially crucial to keep an eye on the care your loved one is receiving so you can swiftly address any subpar attention from health care or legal professionals. Also, closely observe the person you’re caring for to notice shifts in abilities and changes to the health or mood. This can help prevent further medical incidents or the worsening of their condition.⁴
               2. Get organized: Caregiving is challenging. Having a plan helps to stay focused. Consider making digital copies of important documents like living wills, powers of attorney, and medication lists. This will allow for important information to be readily available when you need it. There are caregiving apps for these purposes as well.
               3. Communicate clearly: Building relationships with those who help care for your loved one is essential. Effective communication that’s clear, concise, and respectful helps avoid confusion among the professionals you’re working alongside. Keep notes. It’ll help to stay prepared and hit key points during appointments.
               4. Ask questions: Don’t be shy. Ask questions to educate yourself and troubleshoot roadblocks along the way.

Accessibility is often a primary challenge for family caregivers. Remodeling a home for wheelchair access or for someone with limited mobility can help provide freedom to move within the space whether it’s with the caregiver’s assistance or independently.

Accessibility modifications can be financially and structurally challenging. Caregivers can face high levels of stress while figuring out how the home should be appropriately set up. Accessing the front door and other areas with stairs can be big hurdles. Installing ramps that meet legal requirements is important for safety and ease of use. To ensure the ramp isn’t too steep, the ADA recommends a 1:12 pitch, which means for every inch of elevation there should be 12 inches of ramping.⁵  There are other adjustments that may arise along the way, such as bathroom modifications, sleeping arrangements, wheelchair-accessible working desks, and more. These resources can help when planning your home modifications.

• • • • • • The U.S Access Board provides a guide to ADA Accessibility Standards, which includes guidance for building ramps, new construction projects, home alterations, and much more.
          • The Fall Prevention Center of Excellence is a University of Southern California project dedicated to promoting independent living for persons of all ages and abilities. Their website features online courses, resources, and a national directory for home modifications.
          • The Universal Design Toolkit is Rosemarie Rossetti’s A-Z guide for tackling the challenges faced by those living with disabilities. It covers safety features, accessibility and comfort, and design adaptability.
          • National Eldercare provides housing resources for home modifications. You can speak with an information specialist as well.

Understandably, caregiving can take over your life, leaving little time to focus on your own well-being. As mentioned above, caregivers often overlook their own health, causing a decline in wellness both physically and emotionally. Carving out time for self-care can help avoid burnout and stay on top of your game as a caregiver. Recommendations for addressing your own mental health may sound simple but paying attention to the little things can go a long way towards maintaining your overall well-being. Here are three tips to keep in mind.

1. 1. 1. 1. 1. 1. Reduce personal stress: Recognize the signs of stress early. They might include irritability, trouble sleeping, and lapses in memory. Integrate activities like exercise, meditation, gardening, or connecting with friends to help keep stress at bay.
               2. Set personal goals: Setting benchmarks for projects you’d like to accomplish can be an important tool for self-care. Your list can include leisure activities, such as hiking twice a month or even setting up doctor appointments to check in on your health.
               3. Ask for and accept help: Sometimes caregivers fear becoming a burden to others even when someone offers help of their own volition. Don’t wait until you’re overwhelmed and exhausted to seek assistance. Reach out for help to avoid unnecessary stress that may impact your well-being and ability to care for your loved one.