LAS VEGAS (KLAS) — Laura Berger has a full-time job — a “24/7 labor of love,” as she describes it. She’s the caregiver for her 84-year-old mother, RoseMarie.
RoseMarie has Alzheimer’s disease.
It’s certainly not an uncommon situation. An estimated 6.9 million people in the United States have Alzheimer’s, according to the Alzheimer’s Association. And the 24/7 task of being the primary caregiver is a challenge that husbands, wives, sons and daughters have never prepared for until it arrives.
The Alzheimer’s Association also estimates that there are 54,900 Nevadans currently living with Alzheimer’s disease with 84,000 more serving as unpaid family caregivers. These caregivers provide an estimated 142 million hours in unpaid care valued at $2.68 billion.
The Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas is answering the call in educating caregivers to navigate their new responsibilities. And experts there have identified a need that’s very important in the quality of care for their Alzheimer’s patients: the well-being of the caregivers themselves.
“We know in a recent survey that we conducted with Parade Magazine, nearly a third of family caregivers reported mood and anxiety symptoms secondary to their role as family caregivers. So we know the negative impacts on their physical and emotional health are real,” according to Dr. Lucille Carriere, the Angie Ruvo Endowed Caregiving Chair.
With the holidays approaching, a “Caregiver Gift Guide” that was just released publicly isn’t exactly what it sounds like. Yes, caregivers might appreciate slippers or a bubblebath. But there might be a better way to make a big difference — both for the caregiver and the patient.
Time. It’s one of the most precious gifts for a caregiver who has sacrificed so much. But you can’t put it in a box with a bow. Giving time requires taking a step beyond the statement, “If there’s ever anything I can do to help.” It’s the commitment to make good on that promise to help. November is National Family Caregivers Month.
“And really what we are aiming to do with our Caregiver Gift Guide was to increase awareness about the benefits of respite and taking care of oneself. With that we know that we can hopefully improve their overall sense of psychological well-being, physical well-being,” Carriere said. “But what we also can do is help provide support in times of stress, we can give them time away — hopefully guilt-free time — to take care of theirselves. Identify what those needs are. But also, too, we know that with consistent use of respite, we know that we can reduce hospitalizations, we can reduce placement in nursing homes, and we can reduce caregiver burnout.”
Laura Berger took part in the effort to put together gift ideas. And time was a big ask for her.
“It is so important to take those little breaks and, because, for my own mental health, you start to feel like, ‘Oh my god, I’m losing it.’ I need those breaks,” Laura said. “I don’t have any problem taking them. I have gone away for like three days three different times, and I’ve hired someone to come and stay at the house.”
The Cleveland Clinic/Parade Magazine survey found that 56% of caregivers said it’s unrealistic for them to take a day off, even though 70% agree they need regular mental and emotional health breaks.
“It definitely feels like the world to get away. It’s just as good for her as it is for me,” Laura said.
Carriere said, “Certainly our caregivers are incredibly selfless in their commitment to caring for their loved one and sometimes that can work against their own sense of well-being and health. So what I try to do is meet them where they’re at. What I really want to impart on them is to increase their understanding and their awareness that taking time away can be helpful, not only for themselves but for their loved ones.”
Those breaks can help caregivers feel more rejuvenated and energized to bring patience, creativity and problem-solving into the equation, and “quite critical,” Carriere said, in dealing with challenging situations when they might not always have the answers.
“But if we can have them in a better place physically and emotionally, we’re going to have them in a better position,” Carriere said.
Between prepping all the meals, taking care of the house inside and out and taking care of her mom’s grooming and bathing, Laura is busy. She gets a break when she takes RoseMarie to “school” — the Nevada Adult Day Healthcare Center. The routine is a valuable ally, and an important part in RoseMarie’s health as it stimulates her brain.
RoseMarie worked for Sysco in Las Vegas, retiring after 22 years on the job. Laura moved from Chicago to Las Vegas when her father was diagnosed with cancer. The rest of the family has come to Las Vegas, but caring for her mom has been Laura’s job.
To strangers, everything about RoseMarie appears normal. Laura said she tricks people — even her own children, to a degree. But Laura has learned a lot as Alzheimer’s has progressed.
“She lives in a different time. She’s like, years back. So even the house is a two-story … and it’s a one-story,” Laura said.
At one point she was worried that helping her mom through the disease would turn into a liar. “You really have to change your whole thought process, and if it’s a two-story, it’s a two story.”
That was a real learning process for Laura and her siblings. They would correct RoseMarie, and that wasn’t helping. Now, Laura understands the triggers and is focused on calming her mom when they happen.
“It’s heartbreaking to watch her go through that,” Laura said as she talked about her mom losing cherished memories.
Hispanic women are one-and-a-half times more likely than white women to have dementia, with daughters most often providing unpaid care, according to a Ruvo Center spokesperson. Laura currently serves on the center’s Voice of the Patient-Family Advisory Council (VPAC), where she provides feedback on projects and services to improve patient and caregiver experiences.
She said she takes RoseMarie to the center every month to do physical therapy. During music therapy, RoseMarie can play piano, and Laura benefits from things she learns in occupational therapy. The center also provides hands-on, skill-building workshops and seminars, and art therapy. There are also weekly Lunch & Learn programs covering a variety of brain health-related topics. An onsite library and a virtual library are also part of the offerings.
“I drive down here with my mom all the time, and she’ll say, ‘Look at that building.’ And I’ll say, ‘Mom, that’s where we’re going. That’s the brain building.’ Yes, it gives me a feeling of comfort, of peace, because this is where I learned all my tools and I feel like, I feel a part of this place. And then because I’m on the VPAC, I just take pride in coming here all the time,” Laura said.
“You need these tools on a daily basis … just when you think you’ve got it figured out, things change again,” Laura said.
The gift guide comes at a good time, but the need is there year-round.
“For personal care and then for us, like a gift of time. We need time. So like even getting yardwork done or housework. It’s endless, cooking and cleaning and caregiving for someone with such disabilities. So like all of that is a weight on our shoulders. So for family to jump in and say, ‘Hey Laura, let me come over for the day.’ I haven’t had that yet where somebody just comes in and says, ‘How can I help you?’ That would be music to my ears, like, ‘How can I help you?’ “
“For me, self-care is yoga. I take classes, I go, I get bodywork done now. It has been amazing. I’m just totally realigning my body. I feel like I’ve just like, the weight of the world, I felt like my shoulders were up to here and now they’re back down again.”
“I would like to go on a yoga retreat in another country,” Laura laughs. “For a whole week. That’s what I’d like to do.”
Do her family and friends have any idea that’s what she wants?
“Maybe they don’t even know what to ask. I feel like they’re kind of sometimes in denial of the disease because she looks normal. And so they treat her just like they did before. So this gift-giver guide, yes, at Christmastime, is just … for the gift of time, and there’s plenty of things that they could do for the family, that are for the caregiver, for the person that they’re caregiving for, from helping out at the house, maybe decorating, helping, come over, make some holiday treats, help decorate the house and make new memories. Because now, we’re just making all new memories.”
