It’s not an easy fact to accept. You either already are, or will likely become, one of the 3.5 million Texans who are caregivers for a sick or elderly family member. That’s according to Texas Health and Human Services.
The focus is often on the patient. The caregiver and their enormous tasks are rarely seen or acknowledged, often forcing them into isolation, depression and health deterioration.
So what help do they need? What gaps in the system are holding them hostage, and what support can they can access at any time?
Solutionaries works to answer those questions, so we went straight to the caregivers themselves. We found out there are already solutions to some of their problems, and policy and community work being done to address the others.
For those problems still unsolved, caregivers are ready to use their voices, until they are finally heard.
“We cried a lot that first year. We cried a lot,” said Jim Calhoun, whose wife has Alzheimer’s.
“Immediately, what I thought of with the brain tumor diagnosis was, ‘We’re going to lose her?’ There was an overwhelming amount of emotions,” said Katie and Ryan Pollok, whose daughter had cancer.
“I had to retire my job at 34 years, and that was very stressful for me. I had to learn how to dress her, change her hygiene, basic things,” said Minerva Longoria, whose mother has dementia.
“If he needs anything, he physically cannot do it,” said Meg Reyes, whose husband has ALS. “We tend to try to do it all, and then it becomes an overwhelming task, and then we don’t care for ourselves.”
“I feel like I was a failure,” Calhoun said.
Their loved ones’ diseases, ages and outcomes are different, but the words these caregivers use to describe their experiences are so similar. So are their needs.
“We’ve been married 46 years. Will be 47 in May,” Calhoun said.
Jim Calhoun’s wife, Pam, was diagnosed with Alzheimer’s 12 years ago.
“After she started getting lost for a while, we started having some issues,” Calhoun said.
While she still interacts with people and can display her sassy, funny and lovable personality, she cannot have full conversations.
Jim felt totally unprepared to be here fulltime caregiver. He felt alone, exhausted and depressed until he reached out to the South Texas Alzheimer’s Association, which led him to a support group.
We got to see him in his support group, saying to his peers, “This past six or seven months it’s been hell on my heart. I’m not gonna lie, and that’s the whole purpose of coming to this support group.”
It took him trying a few different groups to find the one for him.
“Those people that were going through the same thing that I was going through so i could bounce things off of them or not feel like I was in this game all by myself,” Calhoun said.
They even gave him advice when he made the gut-wrenching decision to move his wife to a memory care center.
“I thought it was awful,” he said crying. “It was really awful, but I said, ‘I could get through this.”
That’s partly because he was advised to do his homework and visited five centers multiple times before choosing the landing at stone oak where he gets to share the stress with professionals. He said Pam is doing great there.
“It isn’t about me anymore. It’s really about her. So I had to jump into her world versus trying to make her jump into my world,” he said.
The big issue Calhoun see in the caregiving system is insurance coverage.
“I have insurance for every other issue, but we don’t have a process to pay for this. We need insurance companies to allow us to pay for this type of care,” he said.
Since he and Pam are veterans, they’re lucky to be getting VA resources, which he did not know about at first.
“The Alzheimer’s group gives us information. The VA has information, but they don’t talk to each other and that’s what is really needed is that there’s a central source of information,” Calhoun said.
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For other dementia caregivers, even if they did have insurance, they’re not really open to the idea of nursing homes.
Minerva Longoria’s 92-year-old mother, Minnie, was diagnosed with dementia four years ago, and when Longoria looked for care facilities, she wasn’t happy with what she saw.
“The short staff and also COVID going around, flu. It’s also fear of the caregiving quality in the nursing home,” she said.
That’s why she’s thrilled to see House Bill 1673 just passed in Texas, which requires more training for residential center employees to improve the quality of care. Still, there’s much more work to do.
The Alzheimer’s Association reports there are almost 321,000 home health and professional care aides, which is a 30.5% increase is needed to meet the demand by 2030.
Longoria’s concern about nursing homes forced her to quit her job to become a full time caregiver. She was lost and didn’t know how she would afford that care, until she ran into an advocate.
“She told me, ‘I know who you need to contact. I know people that will help you that do that,” she said, crying.
In Texas, there are 1.5 million dementia caregivers that provide over $24 billion in unpaid care, according to the Alzheimer’s Association.
Longoria could be one of them, but then found out she could get paid for caregiving.
“I didn’t realize that i was eligible to be her caregiver and get an income for that,” she said.
That’s what she does now, but that income is just $10.60 an hour with no benefits.
“That’s way less than I was making before at my job,” she said.
Longoria said that amount needs a big upgrade, and so does the submission process.
“I needed all the forms of my mom, all her IDs, permissions. I didn’t realize is going to be 45 days wait for the state just to review her paperwork. So I was without income for about three month,” she said.
The first year she got $150 monthly from United Healthcare for diapers, food and medicine.
“I don’t know what I would have done without that money,” Longoria said.
But then, that payment ended. Now, for others taking advantage, instead of that amount increasing, it has dropped to $125. She said income support is the biggest gap she faces as a caregiver, for a disease the Alzheimer’s Association labels the most expensive in the world.
That’s why on Feb. 16, 2024, members of ADAPT/PACT delivered a letter to Gov. Greg Abbott demanding necessary appropriations to meet a livable wage and benefits for caregivers.
“They should definitely be paid more. I mean, they’re working with human beings who need 24-hour care,” said Ginny Funk, the Director of Programs for the Alzheimer’s Association South Texas chapter.
Funk knows the burden, because she was a caregiver to her mother who passed away from Alzheimer’s disease. She said a key goal is to fund respite care to give caregivers desperately needed breaks.
“We refer to the Area Agency on Aging quite a lot. They get Older Americans Act funding that helps pay for some short-term respite caregiving in the home,” Funk said.
More progress is happening right now. The 2024-2025 state budget directed $5.5 million over the next two years to the Texas Department of State Health Services’ Alzheimer’s Disease Program, which includes services for caregivers. That amount is a 550% increase from previous investments, according to the Alzheimer’s Association.
Regardless of policy, Funk said the Alzheimer’s Association has a 24/7 help line that can set caregivers up with every resource they need. That number is 800-272-3900. That help includes financial, legal, when to start getting certain types of care, and a long list of classes.
Those classes are on:
- Education to learn about the disease itself.
- Behavior and healthy habits to boost brain health.
- Communication to learn how to best interact with a dementia patient.
Another expensive, long-term, and incurable disease is ALS.
“Being given a terminal diagnosis is shattering to the soul,” said Juan Reyes, who was diagnosed with ALS in 2015.
His progression continues, and the only thing Juan can move is one finger, meaning he needs 24/7 care.
“I get him out of bed, he has a hoister lift. Then I get him dressed. There’s days we shower him. There’s days where you sponge bath him. Take him out of the wheelchair, put him on the toilet, clean him up, feed him, drive him around,” said his wife, Meg Reyes.
Meg has been a constant, unwavering support system for Juan, making sure the family stays positive.
“I don’t really stop and think of life without him, because I don’t like going down that rabbit hole,” Meg said.
She’s developed that confidence with constant involvement in the ALS Association and a number of support groups.
“I have multiple support groups that I’m working with right now. I work through ‘I am ALS’. We have a mentor program,” she said.
Since Juan is a veteran, he gets extensive help through the Veteran’s Administration. ALS is one of the conditions that moves a patient to the top level of VA resources.
Meg has been asked to help set up a general caregiver’s support group at the VA. That’s just the tip of the iceberg when it comes to the couple’s involvement in furthering resources for families battling ALS. They constantly travel around the country advocating, including multiple trips to Washington D.C.
Most recently, they went to the White House to promote a big documentary Juan is in called No Ordinary Campaign about to be released on streaming. The effort is to address flaws in the system.
“I think the biggest gap is the cost and not enough quality candidates out there,” Meg said.
That includes outside help.
“If you find a private caregiver, you can negotiate. But if you work with a company that that has caregivers, there’s certain limitations. Like if you want someone that’s going to transport you, it’s going to cost you more. If you have a trach, it’s more,” Meg said.
So Juan and Meg use their voices, and their voices are not quiet.
“You have to be your own advocate sometimes, and that means you have to write your congressmen. You have to go out and not only you. Have your friends, your family on behalf of these issues,” she said.
Texas has the second-largest population of ALS caregivers, at 2.1 million, according to the ALS Association.
A recent ALS Association Caregiver Needs Survey showed the most needed care programs are home visits and equipment loan programs.
“There’s no national network that anyone can tap to find the equipment,” Juan said.
That’s why Meg and Juan are part of a grassroots effort in South Texas to coordinate equipment-swaps between families
“There are Facebook pages that are focused on identifying equipment and supplies that individuals no longer need because their loved one has passed,” Juan said.
They suggest contacting the ALS Association for any help with equipment, finances, and caregiving. There is an entire dedicated page ALS.com/Caregiving.
The diseases of ALS and Alzheimer’s have in common the age of patients, typically older. While other diseases, like cancer, can leave parents caregiving for their younger kids, prompting a different set of obstacles.
“This is our kid, someone I would have gladly taken her place,” Ryan Pollok said.
Charlotte Pollok, 10, is now a cancer survivor, but that’s not what defines her.
“I like volleyball and playing with my friends! I like to draw in my notebook,” Charlotte said.
But cancer did dominate her life for years, starting at the age of nine months.
“We found the first tumor on her adrenal gland and they were able to remove that and no treatment was necessary,” said her mom, Katie Pollok.
However, that cancer led to a more devastating diagnosis called Li-Fraumeni syndrome.
“She’s predisposed to cancer more so than other people would be,” Ryan said.
At 3 years old, they found a brain tumor which required surgery and 18 months of chemotherapy. Charlotte’s mom, Katie, lost her parents to cancer the year before, so her whole family knew the business of caregiving.
“It was almost like a training for what we we’re up against now,” Katie said.
Our Zoom interview with Katie at home with the kids and Ryan at work as a firefighter, was a realistic look into the family’s divide and conquer attitude. They said they owe their success to their family, community, and the American Cancer Society, all stepping in to guide them toward resources.
“There are groups for everything on Facebook, so we joined several groups and were able to talk to people who went through very similar experiences,” Ryan said.
They also met families while they were getting treatment, and in the hospital. They said that’s an unbreakable bond. They consider themselves lucky.
ACSO Publications reports there are 4.6 million people in the United States caring for someone with cancer at home. So many families sit isolated and stressed, not realizing resources are out there.
“I’ve been a caregiver. I lost my mother in 1998 to breast cancer,” said Jeff Fehlis, the Executive Director of the American Cancer Society South Region, offering services he wants families to know about.
That includes a 24/7 care line at 800-227-2345, and they even just launched a new app called ACS C.A.R.E.S., a patient and caregiver support system right on your phone.
“If you’re having trouble, you can call us in terms of transportation to get someone to treatment, lodging if you’re being treated out of town. navigation to help you kind of solve the mystery of cancer,” Fehlis said.
Fehlis said the American Cancer Society has been around for 110 years and is constantly fighting for government support.
“Our advocacy team is at the federal level and at every state house constantly trying to remove barriers, to get navigation covered by insurance,” he said.
Navigation basically means case workers that help guide families through the complicated process.
“Science proves that if you’re navigated through your cancer journey your outcomes are always more favorable,” Fehlis explained.
Those are all resources the Pollok family will have to continue keeping an eye on, since Charlotte’s genetic condition is life-long.
“This is something we’ll do for the rest of her life. She’ll have annual head to toe MRIs every three months, she’ll do other observations, lab work, things like that,” Ryan said.
But if they have to face it again, they’ll know where to turn and they won’t ever feel like they’re alone. That’s the essential tool for all caregivers: to give care while also setting themselves free.
“I would tell caregivers don’t be afraid to ask for help. The people that love Pam will understand. If she’s having a bad day, they’ll understand,” Calhoun said.
They want the ability to break stigma.
“Communicate more about dementia and Alzheimer’s on a regular basis versus once a year, you know, Alzheimer’s month,” Longoria said.
They never want leave their own identity behind.
“Every day, there’s got to be one thing that you can do for yourself. Even just five minutes. It’s to heal me and make me feel that I have a life outside of my every day, constant ALS reminder.
In the end, the most important thing they all have in common is that under all the heartache and stress, is unwavering love.
Charlotte reflected on what she remembered about being in the hospital.
“I have a memory of my dad sleeping on the little sleeper bench, so when I woke up I could see he was there for me,” she said.
Calhoun never takes his connection to Pam for granted saying, “When God was giving out spouses, he gave me the right one. I’ve been very fortunate.
Fortunate is also how Longoria feels.
“Fortunate to be able to look into my mama’s eyes and look at her with a different love. What our parents do for us, you’re paying it forward,” she said.
Juan, speaking on behalf of the patients who depend on their loved ones said, “Being able to catch our breath, knowing that we have someone there to support us, it is immeasurable the gratitude that we have for our caregivers. We would not be able to live a day without them.”
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This article is part of “Solutionaries,” our continuing commitment to solutions journalism, highlighting the creative people in communities working to make the world a better place, one solution at a time. Find out what you can do to help at SolutionariesNetwork.com.