En español | The pandemic has created unprecedented strains on daily life for people across the globe. But for family caregivers, including those who care for wounded, ill or injured veterans or service members, that stress is magnified.
Asking for help can be a challenge for some caregivers, and bringing someone from the outside into your home during the pandemic raises fears for many. Even those willing to ask for help and take the risk can find it difficult to find qualified caregiving assistance.
Research from AARP and the National Alliance for Caregiving found that many caregivers believe services like respite care, in which someone comes in to provide temporary relief and support for a regular caregiver, would be helpful, though use of these programs remains low. Just 14 percent report having used respite care, though 38 percent feel it would be helpful (up from 33 percent in 2015), according to the AARP-National Alliance report “Caregiving in the U.S. 2020.”
How to apply for respite relief
Respite Relief for Military and Family Caregivers is administered by the Elizabeth Dole Foundation with care assistance provided by CareLinx — a qualified in-home respite care provider — and national outreach support by AARP and the U.S. Department of Veterans Affairs.
Requirement: You must provide care to a wounded, ill or injured veteran or service member (and submit proof of service).
Veteran and military caregivers can apply online to receive approximately 24 hours of respite care in four-hour blocks to help with activities of daily living, such as cooking, grocery shopping, light housekeeping, bathing and medication reminders.
For the caregivers who do secure respite relief assistance, the benefits are numerous. To this end, AARP and the Elizabeth Dole Foundation announced that Respite Relief for Military and Veteran Caregivers, originally a pilot program in a handful of states, is going nationwide. The program gives some eligible family caregivers access to no-cost, short-term assistance to help those caring for wounded, ill or injured veterans or service members. It helped 500 families in 2020.
Here are the stories of two military caregivers who applied to the original pilot program and benefited from the respite assistance.
Lara and her husband’s ALS
Since 2016, Lara Garey, 50, of Cedar Park, Texas, has been a caregiver for her husband, Tom, 52, an Air Force veteran. He has amyotrophic lateral sclerosis (ALS), a terminal, degenerative, service-connected disease. The progression of his ALS over the years has left him paralyzed and dependent on a ventilator to breathe. Garey manages all of her husband’s daily living needs, such as eating, bathing and getting dressed, and handles an assortment of health tasks, including tending to his trach and PEG tubes, which assist with breathing and nutrition, respectively.
Before the pandemic, the Gareys had family members and clinicians coming in and out of their home every day. Once quarantine restrictions began last year, that all came to a halt.
“His care now went to just me,” Garey said. “It meant my day is truly 24-7, very little sleep at night, because I’m caring for him. And during the day, all those things that family members would take care of, like helping with the laundry and food and different things like that, now fell on to me.”
Garey said she reached a level exhaustion she hadn’t experienced before. So, when the Elizabeth Dole Foundation began a pilot version of the respite care program, she was excited to apply for assistance.
Once approved, she chose to utilize the respite care hours on Sundays to help prepare for the week. The provider assisted with tasks like unpacking and storing medical supplies, blending food with formula, cooking meals and straightening up the house.
“By having someone come in on Sunday, that really tees me up Monday, to not be so far behind,” she said. “I have in the past felt like I started Monday already a week behind just because I’m exhausted and there’s so much that needs to be done.”
Garey had her initial concerns about bringing a new person into the home but was assured that the provider supplied by CareLinx, the in-home respite care service, would undergo temperature checks and follow the proper precautions. To her surprise, the provider supplied additional personal protective equipment, which was difficult to purchase due to the pandemic but essential for some of her husband’s routine health needs.
“I want other caregivers to realize they need to think about what it is that would help lighten their load as they move forward,” Garey said. “I hope everybody takes advantage of using CareLinx. This is an amazing program, because it’s actually a tangible program to help caregivers.”
Sharon and her son’s severe conditions
Since 2015, Sharon Grassi, 59, has been a caregiver for her son, Derek Tope, 33, an Army veteran from Gilbert, Arizona. Tope struggles with spine damage, PTSD, post-concussion syndrome, sleep apnea and more. Having just finished her degree, Grassi thought she would only need to dedicate about six months of caregiving before going back to work. However, she found that between her son’s daily needs, numerous doctor appointments and navigating the paperwork required by the Department of Veterans Affairs (VA), caregiving took center stage.
“Our son has a lot of nighttime issues. He’s on pretty heavy-duty medication at nighttime, because he can’t sleep,” Grassi said. “Because of all the damage that was done to his spine, he has a hard time being in a bed.”
During the day, Grassi tends to her son’s wound care and completes what she compared to “secretarial work”: preparing paperwork for the VA and keeping medical appointments in order. Tope has anywhere from four to eight appointments a week.
“So there’s a lot of reminders, a lot of meeting with his providers to make sure that they know changes that are going on,” she said. “Managing someone else’s life becomes a daily thing that a lot of caregivers can relate to. Especially with TBI [traumatic brain injury], you become the keeper of everything.”
At the onset of COVID, many concerns surfaced for Grassi, especially since her son is immunocompromised. After her husband contracted the coronavirus, she wondered what would happen if she caught it and who would tend to her son’s wounds. She eventually became infected with the virus and was at a loss.
“I even reached out, I’m like, ‘Can somebody help me? What if I can’t do it one day?,’” Grassi said. In response, she said, she was told that no one could come to her aid because she had contracted COVID-19 and, though her son wasn’t symptomatic, he had been exposed to the virus.
Grassi was approved for the respite relief program just before Thanksgiving and right after her son had multiple health setbacks, culminating in two surgeries.
“I ended up having to stay in the hospital for almost a week with him. My house was in chaos. Everything was a mess. And we had Thanksgiving coming up,” she said. “There’s the holidays, the things that you would normally be doing, and instead I was just freaking out that all I was going to be doing was trying to play catch-up.”
Once the provider from CareLinx arrived — dressed in medical scrubs, a mask and gloves — he was able to help put the house in order and even get all the wound care supplies organized.
“The guy cleaned all my windows. He mopped my floor. He was so wonderful. It felt like there was just this huge weight lifted off of me,” Grassi said. “When people ask what a caregiver wants, I always say the first and biggest thing is time. Time is that thing that we just don’t have.”
Aaron Kassraie writes about issues important to military veterans and their families for AARP. He also serves as a general assignment reporter. Kassraie previously covered U.S. foreign policy as a correspondent for the Kuwait News Agency's Washington bureau and worked in news gathering for USA Today and Al Jazeera English.