Hardworking middle class left holding short end of caregiving stick

By on January 24, 2016

By David Heitz

Rhonda Long’s story is one of a middle class, hardworking family that is being screwed for being just that – middle class and hardworking.

Rhonda and her parents do not qualify for Medicaid. Medicaid provides long-term care for the elderly, but only once they become completely broke.

Medicaid also provides day care for the elderly, which, in theory, gives a caregiver time to work a part-time job, since so many people have to quit their full-time jobs to take care of mom and/or dad, like Rhonda. But in so many states, like the despicably fiscally irresponsible state of Illinois, even those services are being cut. The front page of my local newspaper, The Rock Island Argus, read yesterday: “InTouch Adult Day Services to Close.” The reason? The state owes it $6 million in Medicaid payments. InTouch just can’t keep going.

What will happen to these people? Well if their children choose to care for them, they likely will end up on welfare while trying to also get by with mom or dad’s small Social Security check, too, living as a family. If the care is substandard, and it may be under such difficult stress and circumstances, the state will have to intervene and place the parent in a nursing home, and then the federal government will begin paying the $5,000 to $8,000 monthly cost for that. (Update: Help at Home takes over InTouch)

Related News: Dementia-friendly America communities help elderly stay in their homes longer

Rhonda long has wondered why the government can’t pay caregivers a small living wage, or at least foot the bill for respite care so they can get a part-time job elsewhere.

But with the state of Illinois proving unable to do that for even the poorest of the poor, one wonders how it could be accomplished for the children of people drawing Medicare. I guess
lottery funds would be one idea. Of course everyone likes how so much of that goes to the schools already.

Meanwhile, Rhonda has lived with her mom and dad in their house for 11 years. “They had helped me out in a time of need and in return I told them they would never see the inside of a nursing home as long as I could help it,” she told Caregiver Relief. “I honored my commitment and continue to do so.”

Rhonda’s dad passed away in June. She is pictured with him here. Through the years Rhonda’s dad had four heart attacks (Rhonda quit her job after each one) and eventually chronic kidney disease, atherosclerosis, PAD, spinal stenosis, dementia and many other ailments. After his fourth heart attack, he became bowel and bladder incontinent.

He died at home in June, under hospice care, but it was very difficult for Rhonda and her mom.

Now, mom has Alzheimer’s. Remarkably, Rhonda feels “guilty” about having a meal to herself now that dad has gone. At least mom is in good enough shape were she can leave the house a couple of hours a day.

But let’s face it. Mom won’t be that way forever. Memory care, if you dare trust any of the facilities out there, costs about $4,000 per month. A nursing home? Twice that. And remember: No help caring for your elderly parents until they are broke.

“In the last 11 years I have been away from this house for my own pleasure a total of 32 hours,” Rhonda told Caregiver Relief. “And I had to beg for that. I love my brother deeply, but he just doesn’t get it. I went through and beyond caregiver burnout.”

Rhonda said that in retrospect, “I think if we had the money, respite care would have been very beneficial for all of us. I would have been able to be refreshed emotionally, and I would have had some time to be a daughter and not always the caregiver.”

So in the meantime, Rhonda lives with her mom in a house that has a reverse mortgage. When her mom dies, Rhonda will be an orphan and homeless.

Rhonda’s questions for the presidential candidates: Why can’t the government pay caregivers a small living wage, or at least foot the bill for respite care so they can get a part-time job elsewhere?

Coming up: We invite all of the presidential candidates to “Be a Caregiver for a Day.” And we even will provide an hour-by-hour itinerary of what to expect. Stay tuned!

One Comment

  1. vea

    January 25, 2016 at 3:56 am

    Great article David!! Can’t wait to hear what happens.

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