This piece originally was written last year for Caregiver Relief as one of several point-ups to the presidential election. Reprinted here with permission. Special thanks to Diane Carbo and Rhonda Long.
By David Heitz
Rhonda Long’s story is one of a middle class, hardworking family that is getting the short end of the caregiving stick.
Rhonda and her parents do not qualify for Medicaid. Medicaid pays for 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. They just can’t keep going. (Editor’s note: InTouch later was taken over by a private company from Lutheran Social Services, but I am not sure of the current status of the services it provides).
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. If the care ends up being more than a family caregiver can handle, and it can be under such difficult stresses and circumstances such as dementia-related illness or both parents ill at the same time, the state will intervene and place the parent in a nursing home. Once the parent is completely broke, the state will pick up the $5,000 to $8,000 monthly nursing home bill. When it’s all over, the states goes into the homes of these people and auctions off all of their belongings to make up the difference. The children are left with nothing.
Related News: Dementia-friendly America communities help elderly stay in their homes longer (Click on the link to learn more)
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 at least 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 that going to the schools.
Something to think about: When we care for our children, we get to see them grow up and care for themselves. When we care for our parents, they only get worse.
Not a pretty picture, but it’s reality.
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 those facilities (memory care is a social model, not a care model), costs about $5,000 per month. A nursing home? At least a thousand per month more. And remember: No help caring for your elderly parents until they are broke. Click on the link to learn more.
“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 President Trump: 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?