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How a Caregiving Grant Allowed My Sister and Me to Take a Much-Needed Vacation

Funds may be available for respite care, adult day care and even some home modifications

spinner image Cassandra Brooklyn and her sister Samantha Ruiz on their vacation trip together
Cassandra Brooklyn and her sister Samantha Ruiz
Courtesy Cassandra Brooklyn

My sister, Samantha Ruiz, and I were sitting on a patio in Madeira, Portugal, having afternoon tea and gazing out at the crashing waves of the Atlantic Ocean. It was the first day of our first vacation together in six years. Sure, work, kids, finances, and a global pandemic had made it difficult for us to travel together. But our main obstacle was caregiving responsibilities for our mother, who suffers from dementia and advanced Parkinson’s disease.

With virtually no extended family support and lacking the funds to pay for pricey overnight care (which runs about $250 per night), the idea of escaping to Madeira seemed like an unattainable dream. Last year, however, we learned about respite grants, and this January, we received a $4,000 grant from the Alzheimer’s Association of Wisconsin to cover care, funded through the National Family Caregivers Support Program (NFCSP).

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Our mother, Beverly, who lost our father when we were in elementary school, was the strongest, most dedicated and supportive mother any child could have. She deserved to be cared for at home, living her last years in the house she and our father built and moved into mere months before he died. However, the amount of care and attention she required was exhausting, emotionally draining and unsustainable. Both Samantha and I were suffering from severe caregiver burnout.

spinner image Cassandra and her mother, Beverly
Cassandra and her mother, Beverly.
Courtesy Cassandra Brooklyn

For three years, we have been responsible for the day-to-day care of our mom — cooking, helping her get dressed, managing her medication, taking her to appointments. We also help her shower, brush her hair, and, on bad days, help her eat, drink, and brush her teeth. As her dementia symptoms worsen and include mild delusions, more time is spent reassuring her nobody is in the house trying to harm her, and hanging towels to cover windows, mirrors, and handles so she can’t be “spied” on. All of this is on top of working full time and raising kids.

Applying for a grant

By attending free workshops and conferences offered by the Wisconsin Parkinson’s Association and Alzheimer’s Association, we learned about grants provided through the Respite Care Association of Wisconsin (RCAW). To receive funding, we needed an eligibility letter from the Alzheimer’s Association, which submitted forms to RCAW on our behalf and helped us understand the grant process. (The letter states that we did not receive additional monetary support from another grant or assistance from Medicaid, but eligibility requirements vary across programs and states, so be sure to obtain clear guidance about how to qualify for respite support.) Last year, we received a $900 grant from the RCAW. This January, when I approached the Alzheimer’s Association  about getting another eligibility letter, I asked whether they offer their own grants. As it turns out, they do administer national grants, but they run out very quickly, so we had to act fast.

In about two weeks, the Alzheimer’s Association helped us apply for, then approved, a $4,000 grant, which is the maximum amount they offer. Because we couldn’t receive two grants simultaneously, we opted for the larger Alzheimer’s Association grant. The RCAW told us that once that grant was exhausted (the organization pays the care providers directly), we would then be eligible to apply for their smaller grants, which are offered more frequently.

Respite grants work differently across organizations and state lines, so some digging may be required to determine what’s offered in your state and for your specific situation. Grants like these are usually applied for and administered through local Aging Disability Resource Center (ADRC), so to receive funding, you’ll need to find a local group to work with. In Wisconsin, local caregiver support programs can be found by searching the Wisconsin Department of Health Services. The Milwaukee chapter of the Alzheimer’s Association is unique; it administers grants while other chapters don’t.

According to Jennifer Nowak, the program manager of the Alzheimer’s Association’s Wisconsin Chapter, grants can be used for day programs; respite stays; overnight care; payment for informal and professional caregivers, equipment, safety response systems and home modifications. Nowak says the group served 120 families last year, and that grants are unique in that they help each family individually and can even “help with some expenses like meals, grab bars, and the installation of products that make living at home easier.”

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Finding a temporary caregiver

Due to COVID-19-related staffing shortages (and concern about crowded care facilities), some grant-giving organizations, which used to provide grants only for approved health facilities, have adapted rules so that grants can also go to individual caregivers, such as family, friends or certified home health attendants working for agencies.

For the Alzheimer’s Association grant, we knew overnight care would be required for us to fly to Madeira, so we were grateful that it became available at the facility our mother was already familiar with. Before our trip, we had several calls and in-person meetings with the facility to review our mom’s condition, symptoms, diet, habits, hobbies and personal preferences. We printed a list of her medications and brought it to the facility so they could measure the exact amounts she’d need for her stay. We also booked the required “test night” to ensure it was a good fit. Once our mother “passed,” she was officially approved for multiday overnight care, and we began planning our trip.                                                                                                

spinner image Cassandra and her mother, Beverly
Cassandra and her mother, Beverly
Courtesy Cassandra Brooklyn

Unexpected challenges

Weekend respite services often fill up months in advance, so we could book overnight care for our mom only during the week. We contacted two daytime caregivers we regularly hire on the weekends, when busy work schedules make it difficult to care for our mother. One of them confirmed availability for the weekend in question. And soon we were on our way!

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There were some rocky points. On our first morning in Madeira — halfway around the world — the scheduled weekend caregiver texted to say she was sick and could not watch our mom. We scrambled, calling anyone and everyone we knew who could help. My sister is a nurse, and several of her trusted coworker friends had kindly agreed to pick up her weekend shift so she could go on the trip; as such, they were busy at the hospital. In the end, my sister’s husband had to take time off work (which, unfortunately, happens pretty frequently) so that our mom wouldn’t be alone.

My brother-in-law made it through the weekend and dropped our mom off at the care facility on Monday morning. For the first time, we could all simultaneously relax, knowing mom was safe. For the next five days, my sister and I spent our days on wine tours and whale-watching trips instead of being on call 24/7.

Respite rejuvenation

My sister and I live in different states; we fly our mom back and forth to share caregiving responsibilities (while airfare is not cheap, trading off care is a necessity and and more cost-effective than the cost of overnight care). We speak on the phone several times per day, and for the past three years, virtually all our conversations have been about our mom’s medication, symptoms, caregiver schedules, doctor’s appointments, medical bills and costly home repairs. My sister is a rock, and I can’t imagine facing this without her, but it almost felt like we stopped being sisters and, instead, became business partners or colleagues. I’d almost forgotten what it felt like just to be her sister.

Words cannot describe how meaningful this trip to Madeira was. When stressed out about my mom, I often look at a picture we took together on the trip to remind myself of happier times. Now that our $4,000 grant is nearly exhausted, we are searching for other grants and dreaming of our next escape.

Caregiver Grant Tips

  • Every state is different, so do an online search for “caregiver” or “respite” grants or use the ARCH Respite Locator for local programs.
  • Reach out to organizations specializing in the condition your loved one suffers from and ask whether they’re aware of available grants.
  • Remember: Find and interview respite care providers to ensure they offer the services you need and have capacity to take on new patients.

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