For Davette Robinson, it began with an innocent accusation.

“He said, I wasn’t his wife, and I shouldn’t touch anything that she had,” Davette said. “It got to the point where if I go sit at my computer, he would come over. He said, ‘Don’t touch anything here.’ So I couldn’t use my computer while he was awake.”

After 55 years of marriage, kids, and grandkids, Davette’s husband Bob no longer recognized her. He was diagnosed with Alzheimer’s disease several years ago and eventually became so hostile that he called the police, believing his wife was a stranger in his home. And after Riverside County Sheriff’s deputies responded to her La Quinta house for the third time, Davette felt forced to leave.

“It got to the point by late 2020 where I had to go and stay at a hotel at night because he didn’t want me here,” Davette said. “He was ready to leave.”

That’s when she made the crushing decision to let him go and place him in a care facility. 

“I had to start considering him as just somebody I was taking care of, instead of Bob my husband,” said Davette. “Because if you keep it, that person, they get to the point where you still love them, but you don’t like them because of the behavior.”

The day-to-day forgetfulness and hostility are part of why caregivers can burn out so fast.

The pandemic made circumstances for care exponentially worse. Dementia caregivers reported skyrocketing rates of depression from 5.9% to 60% just one year into Covid-19, according to one study from Frontiers in Psychiatry.

“Caregivers are under so much stress and oftentimes don’t have supportive services to watch their loved one. They can’t go to the doctor. They don’t have time to exercise,” said Susan Howland, the program director of the Alzheimer’s Association, California Southland Chapter. “So frequently, we do see the individual who is the caregiver, actually being physically sicker than the individual living with Alzheimer’s disease.”

This is also often the case with caregivers helping loved ones fight cancer or any other debilitating disease. It can be what happens when you sacrifice for someone you love. Davette worked with Alzheimer’s Association and attended support groups to learn patience as well as special communication skills for someone who can no longer use reason.

Davette is one of 53 million caregivers in America, according to AARP and National Alliance for Caregiving, a number only expected to shoot up as baby boomers age and live longer.

In the Coachella Valley, more than half the population of Indian Wells and Rancho Mirage is age 60 or older, while Palm Springs and Palm Desert have nearly half in that demographic, according to the Coachella Valley Economic Partnership. 

But with so many people rapidly aging, why aren’t there stronger social security nets for the elderly?

“Our current model for aged care is broken,” said Sade Dozan of Caring Across Generations, a caregiving advocacy nonprofit. “Social Security and Medicare have not sufficiently been updated to reflect the older adults’ 21st century needs. So the U.S. needs things like a long term care insurance program. And this isn’t the case for other countries; other countries are truly investing in their care system.”

Other countries like Finland and Taiwan, which have governments that provide publicly-funded guaranteed care for elderly citizens, with recipients given options to receive care at home or at a facility — because these countries see long-term elderly care as a social imperative. 

In America, while Medicare and Medicaid offer either coverage with long waitlists or limited coverage for people who qualify, there is no federal long term care program that works for everyone. If you need it in old age and you don’t qualify for Medicaid, you are primarily on your own. 

Advocates argue caregiving in America, for the old or young, is not a funding priority because it has historically been the work of black women in slavery.

“Caregiving has been undervalued, and underpaid, largely because of the historically racist patriarchal structures, reaching all the way back to the nation’s founding that treated caregiving as the work of black enslaved women,” said Dozan. “And that ripples throughout all of the structural inequities that we face. It’s rooted in these systems. And this care work, especially paid care work, is done and performed by largely black and brown populations, a good amount of whom are undocumented immigrant women. 

Women are estimated to provide more of the care, with statistics from Family Caregiving Alliance showing 66% of caregivers was comprised of women, who are also more likely to drop out of the workforce once becoming caregivers. Communities of color also suffer disproportionately when it comes to unpaid caregiver burnout rates; Hispanic and Black caregivers spend more time caregiving and see higher burdens financially, according to Alzheimer’s Association.

Right now, the support Americans can receive from the government depends entirely on location. In Hawaii, there’s the first-in-the-nation Kupuna Caregivers Program, which helps pay working family caregivers the costs of caring for their elders. In Washington, there’s the first state-operated WA Cares long term care program to ensure working residents there can access affordable care as they age. 

But in California and Riverside County, there’s currently no such program or funding available for the public at large. 

These days, Bob is under the care of Vista Cove in Rancho Mirage, where Davette visits him every weekend. But care facilities are costly and with only their dwindling retirement to pay for this unexpected turn of fate, the future is uncertain.

“I’m going to have to sell the house. You know, and it just is what it is. You have to come to terms with it,” Davette said.

 It is a bleak reality for so many elderly and their caregivers who are out of options. But advocates say it doesn’t have to be this way and how we treat our elderly in the years to come can be inspired from other countries and states trailblazing for those who have been here the longest.

Recently, the Biden Administration announced a series of executive actions to improve our national caregiving model. It includes a budget to hire home care for veterans and respite care support for family caregivers but no mention of a long term care program accessible to the wider public. 

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The new mission statement is inclusive of all those who have served in our nation’s military — including women Veterans — as well as Veteran families, caregivers, and survivors. VA currently serves more than 600,000 women Veterans, the fastest growing cohort of Veterans. VA also serves more than 50,000 Veteran caregivers, more than 600,000 Veteran survivors, and millions of Veterans who did not serve in combat.

In crafting the new mission statement, VA surveyed roughly 30,000 Veterans. Among Veterans surveyed, the new version of VA’s mission statement was chosen over the current version by every age group; by men and by women; by LGBTQ+ Veterans; and by white, Black/African American, Hispanic/Latino, Asian and American Indian/Alaska Native Veterans.

“Whenever any Veteran, family member, caregiver, or survivor walks by a VA facility, we want them to see themselves in the mission statement on the outside of the building,” said VA Secretary Denis McDonough. “We are here to serve all Veterans, their families, caregivers and survivors — and now, our mission statement reflects exactly that.”

In addition to two rounds of surveys, VA conducted dozens of small-group engagements with Veterans to understand what was most important to them in a VA mission statement, then incorporated that feedback into quantitative research. The new mission statement reflects that VA serves all of the heroes who have served our country, regardless of their race, gender, background, sexual orientation, religion, zip code or identity.

The previous mission statement was: “To fulfill President Lincoln’s promise ‘to care for him who shall have borne the battle, and for his widow, and his orphan’ by serving and honoring the men and women who are America’s veterans.” The previous mission statement is posted in roughly 50% of VA’s facilities. Over the coming months, VA’s new mission statement will replace the previous version.

Secretary McDonough will host an event today commemorating the new mission statement, featuring speeches from a woman Veteran, a caregiver and a survivor about what it means to feel included in VA’s mission.

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With a theme of Denim & Diamonds, cancer survivors and caregivers were given a chance to shine at the 10th annual luncheon presented by the Relay for Life of Riverside County East and the Soboba Foundation at the Soboba Casino Resort Event Center on July 31.

Cathi Hill, Senior Development Manager for the American Cancer Society, plans the annual event with help from many volunteers, friends and family members. She presented a special award to members of the Soboba Foundation for their longtime and ongoing support.

“I want to express our sincerest appreciation for all the support the Soboba Foundation has provided to the American Cancer Society’s Relay for Life for many years,” Hill, who is the Relay for Life staff partner, said. “I have been fortunate to work with Andrew Vallejos, who holds the role of Sponsorship Coordinator, and other Foundation members for the past 12 years.”

She said it has been an honor to watch the relationship grow over the years and on the 10th anniversary of the Soboba Foundation sponsoring the Survivor & Caregiver Luncheon presented them with a crystal recognition award. Accepting were Foundation Secretary Antonia Briones-Venegas and Member-at-Large Kelli Hurtado, who also serves on Soboba Tribal Council as Sergeant-at-Arms. At last year’s luncheon, Hurtado shared her survivor’s story.

To illustrate the level of commitment from the Soboba Foundation that the American Cancer Society Relay for Life has enjoyed through the years, a slide show was presented that highlighted just some of the ways the Foundation has supported the cause including hosting Relay for Life events for 12 years; Relay Golf Classic, 11 years; Soboba Lip Sync Contest, 11 years; Casino Night fundraiser, 10 years; and the Up, Down & Dirty 4 A Cure Mud Run, 2 years.

The annual luncheon, organized to celebrate survivors, remember those who have been lost and thank all the caregivers, is designed to promote hope. Hope that anyone facing cancer can find the care and support they need and hope for a cancer-free tomorrow.

“Cancer survivors are living proof that we are making a difference in the fight against this disease,” emcee Bob Baker said. “They endured days of illness, medical appointments and tears, yet they are here with us today as we honor their crusade against this disease.”

About 120 guests attended the luncheon that featured live music by Sheila and Larry James of the Jamestown singing duo. The first guest speaker was cancer survivor and Hill’s sister, Cynthia Belzl, who shared her personal journey of being diagnosed with breast cancer in May of 2020.

Although she was told her cancer was caught early, it was aggressive and she had to undergo five months of chemotherapy and about 21 rounds of radiation. Her treatments at City of Hope in Duarte took place during the height of the pandemic so no one was allowed to go with her to her treatments. She said while sharing many of the same feelings and experiences as other survivors she uses the words grateful and thankful a lot.

“What got me through was having wonderfully supportive family and friends,” Belzl said.

All cancer survivors in attendance were asked to stand to receive a gift of a medallion that read “This is what a cancer survivor looks like.”

Two of those survivors are Soboba Band of Luiseño Indians Elder Marian Chacon and her best friend Rachel Miranda, both 86-year-old breast cancer survivors. Chacon, who was diagnosed in 2009, had a lumpectomy and 30 days of radiation treatments.

“It was found on a routine mammogram and I always make sure to keep up with all my checkups,” Chacon said.

Miranda, whose breast cancer was also discovered through her annual mammogram, was treated in the 1990s. Both attend Soboba-sponsored American Cancer Society and Relay for Life events as often as they can.

The next guest speaker was Chrissy Rohlmeier, of Wildomar, who became a caregiver at the age of 20. Shortly after her father passed away suddenly from lymphoma in late 1994, her mother was diagnosed with lung cancer.

“My mom was the rock of the family, the woman that did everything for me,” Rohlmeier said, adding that to support her mother, she had to step up her game and become the shopper, cook, cleaner, the person who took her to the doctor and the nurse who made sure she was eating, staying hydrated and taking all of her medications.

“When your loved one comes out on the other end of cancer, when they fight like crazy and become a survivor, it has to be the best feeling in the world for them but also for the caregiver that is fighting right alongside them,” Rohlmeier said. “Sadly, that wasn’t the case for us. My mom passed just five short months after her diagnosis, eight months after we lost my dad.”

She admits that being a caregiver is probably the most difficult thing she’s ever done in her life but said it’s also the biggest privilege she ever had.

Caregivers were then asked to stand and receive a special token of gratitude, which was a flower seed packet imprinted with the words “Where love resides, hope grows.” It seemed like a fitting gift for those that nurture others.

Another caregiver in attendance was Myrna Hollinger, 88, of Moreno Valley. After spending three years supporting her husband through his terminal cancer in the early 1990s, she became her daughter’s caregiver after she was diagnosed with abdominal sarcoma in 2001.

Carol Hollinger, now 55, was living her best life when her world was turned upside down and inside out. She was set to graduate from California State University, San Bernardino with her bachelor’s degree in English and she was planning her wedding, which got canceled when her fiancé left because he couldn’t handle the situation.

“Everything just came to a halt,” she said.

Mothers become caregivers as soon as their child is born but Myrna said watching her “baby” go through a 9-1/2-hour surgery and a long recovery period was difficult as she hated to see her suffering.

“After being married for 40 years, it was rough to get on without my husband but after all the stuff he went through with his cancer for two years, it was a relief that he was finally out of his misery,” Myrna said. “It’s completely different when it’s your child. For a while, we didn’t know if she’d survive.”

Because Carol’s surgery was so extensive and all her cancer was removed, no chemotherapy was needed. Myrna said when the doctor told her after the surgery that her daughter would recover and would be able to live a long and healthy life she told him, “From your mouth to God’s ears.”

Carol said that during her recovery, she spent a lot of time in her recliner, watching television.

“I saw a Relay for Life commercial and at that point I could barely walk, but I told myself that I wanted to get healthy enough to do a Relay one day. And I did,” she said.

Hurtado realized firsthand the importance of a good caregiver and thinks the annual luncheon is very important as it honors them while giving hope to those that are going through treatments.

“The caregivers go through so much watching their loved ones go through so much pain and suffering and there’s nothing they can do,” Hurtado said. “I love that the American Cancer Society recognizes caregivers because sometimes they’re not applauded enough. My husband was my caregiver and after my surgery he did everything for me. He took time off work, he scrubbed me in the shower and he always made sure I was okay. I know that was hard for him.”

Hemet City Council Member Linda Krupa was invited to the luncheon by her friend Lauri Morris who is a cancer survivor, caregiver, friend and fellow Rotarian. Attending the event for the first time, Krupa said she was very impressed. She has attended several Relay for Life events in the past honoring her two sisters, who succumbed to cancer and one sister who is a survivor, as is Krupa.

“Upon finding the (breast) lump in January 2021, I announced to everyone who would listen to insist on annual screenings. Thankfully there are many of us survivors, but prevention would be welcomed,” she said. “The surgery and radiation are complete and I’m in the five years of daily pills and numerous tests. I am surviving cancer.”

All Relay for Life events include a Luminaria Ceremony, which is a ceremony of remembrance and hope. It symbolizes a time to grieve for those that have been lost, to reflect on a personal cancer experience or that of a loved one and to find hope that tomorrow holds the promise of a cancer-free world.

Baker said, “Luminarias have such a unique ability to evoke emotions from all of us. To one person, a luminaria is a symbol of hope, as it represents the life of someone who is living life cancer free. To another, it may represent sorrow and sadness as the life of a loved one who is no longer with us is remembered. To someone else it may represent peace and acceptance as they realize they are never truly alone in this journey. The luminaria ceremony is a powerful representation of why we are all here; why we are all fighting.”

The lights were lowered and each guest was asked to light the flameless tea light candle inside the bag they were given to create a luminaria in honor or memory of someone who has touched their lives.

Baker said, “We are turning our sorrows into celebrations and we are converting our losses into action. We have put faces and voices to this disease. We know we have made a difference, and we will continue to make a difference. We will keep fighting until there is a cure.”

A moment of silence was requested “to reflect on how cancer has touched each of us personally. It’s a time for us to look inside ourselves with quiet reflection and find hope. Because no matter what our experience with cancer has been, we all share the hope that we will one day live in a world where our children and their children will never have to hear the words, ‘You have cancer.’”

A slideshow was presented which included a host of submitted photos in honor of those who are cancer survivors and in memory of those who are no longer here.

Baker explained that the American Cancer Society exists to improve the lives of cancer patients and their families. Despite evidence that regular screening gives a person the best chance of early detection and prevents certain cancers from even starting, too many individuals for whom cancer screening is recommended remain unscreened.

“In 2022, more than 1.9 million new cancer cases arose and there were 600,000 deaths,” Baker cited. “That’s 1,700 deaths per day. One in two men will be diagnosed with cancer and 1 in 3 women will be diagnosed with cancer. This illustrates that we still have a lot of work to do and that is why the American Cancer Society is fighting cancer on every front.”

In 2021, American Cancer Society programs touched 55 million lives. It continues to be the largest nonprofit funder of cancer research in the United States outside of the federal government, investing more than $5 billion over 75 years.

Hill, who has been on staff for 17 years with ACS, looks forward to the annual Survivor & Caregiver Luncheon. With much help from volunteer Billie Jo Thompson, Hill plans and implements novel themes and an inspiring program each year.

“When the room is set and decorated, I am able to let out a sigh of relief, and then the doors open for our guests to enter and my heart skips a beat with such joy to see all the smiling faces and the love in that room,” Hill said. “But if I must choose one part of our time together it is hearing our guest speakers’ stories and having them share their most vulnerable moments of their journeys. I love my job with the American Cancer Society but I love spreading hope more.”

ACS’s annual Relay for Life is the world’s largest volunteer-based fundraising event. For more than 36 years, communities across the world have come together to honor and remember loved ones and take action for lifesaving change. This year’s Riverside County East event will be Sept. 24 from 2 to 8 p.m. in Jurupa Valley. Event contact is Billie Jo Williams at billiejo_williams@verizon.net or 909-957-7189. For more information, www.relayforlife.org/riversideca.

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