After years of round-the-clock care with almost no outside support, Barb Jestic’s family was forced into a system offering little relief, exposing how rural families are left to shoulder elder care alone, with few viable alternatives.
AMAC and Independent Women (IW) have launched a joint national campaign to address America’s caregiving crisis. As part of this multi-layered strategic partnership, AMAC and IW solicited real stories from real Americans about their struggles navigating complex and burdensome legal structures to provide care for aging loved ones. This story first appeared on IW Features.
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Barb Jestic’s 90-year-old mother was determined to maintain her independence on the farm she had lived on for decades, but her children knew her health was deteriorating fast. The around-the-clock care needed to keep their mother safe was a financial and logistical nightmare, one which highlighted the dearth of resources available to the elderly and their families in rural areas.
In an interview with IW Features, Jestic detailed four years of traveling from Missouri to rural southern Illinois to care for her mother before being forced to place her in a nursing home at the age of 96.
“I would stay with her for two to three weeks at a time, and then another sister would come relieve me for a week or two, and then I’d go back again. So we had the flexibility of having a little bit of help. If I had something I really had to do or desperately wanted to do, then someone else, typically, was able to fill in for me. And my big concern is all of those people out there who have nobody—nobody to help them.”
Even with all the family help, Jestic constantly missed out on her own health-related appointments, as well as on family time with her husband and children in St. Louis.
Making the Jestics’ situation even more complicated is the fact that many resources that might have helped weren’t available because of their mother’s rural location. One such resource, usually available in big cities, was an adult day care for emergency situations where no family member was available. Even hiring a home nurse for a few hours was impossible, as no one was available in the rural town who was willing to administer any kind of medication or cook for the Jestics’ mother due to allergy concerns.
Realistically, Jestic and her siblings could only leave their mother for a couple hours at a time, if that. All the state could offer the family was a caretaker to come and give her mother a bath once every couple of weeks.
Jestic said that in their mother’s rural town, there wasn’t even a specific local government agency in charge of helping care for elderly citizens. Even a directory of medical professionals who were available for hire when family needed extra help to care for elderly parents or grandparents would be a step in the right direction, Jestic argued.
The problem of rural elder care is mostly due to a lack of funding, Jestic said. Because populations are lower and sparser in these areas than in urban areas, it is hard to justify the personnel and infrastructure needed to adequately care for rural elderly.
“Funding is difficult to get because they don’t stop to realize they need it because they just say, ‘Well, it’s a small town. There’s not that many people,’” Jestic explained. “And you certainly couldn’t justify having facilities in every town, but if you even had it within driving distance. … I just feel like it’s probably funding as much as anything, and then the rural areas typically get overlooked.”
Indeed, the financial strain of caring for elderly family members adds another layer of unpredictability and stress for families. Under Medicaid, caretakers can often receive pay for hours worked. Yet the paperwork needed to secure this payment was prohibitively burdensome, Jestic said, requiring applicants to detail every single caretaking action they took every single day and send it in every single week.
“In reality, I know people don’t do that. And I can tell you that because we are so busy, especially once they need the 24/7 care, from the minute they get up—after being woken up however many times during the night because she would hallucinate with the dementia, so you’re never getting good sleep. And then everything you have to take care of during the day, and all. We’re exhausted by the end of the day. There’s no way that I had the energy to sit down and fill out all this paperwork,” Jestic said.
“You had to document what time you did this, and how many times a day, how much you gave them when you gave them medicines, and what medicines you gave, and all of that kind of stuff,” she explained.
Those who say that Jestic could have just put her mother in a nursing home are missing the point, she said. Plus, nursing homes “aren’t always best for the elderly person either,” she argued. Jestic said she and her family learned this the hard way. When they were finally forced to place their mother in a home, she deteriorated quickly.
“It was a good nursing home compared to many. But that was just the end for her. She absolutely did not want to be there,” Jestic said.
Jestic urges lawmakers to remember rural areas when it comes to funding, and to remember that families deserve options to help their aging relatives live well during their final years.
“Caring for elderly parents in rural areas is no less important than caring for them in the urban areas, except that we do it without the resources,” she said.
I am extremely opposed to putting parents in facilities for “care” at the hands of strangers. Facility care is beyond deplorable. Animal shelters provide better care to dogs and cats! Even just senior daycare is deplorable.
I brought my father to live with me but I needed to keep my job so I dropped him off at daycare on my way to work daily and picked jim up on the way home. I moved him to 4 different daycare businesses as each one failed to deliver even a modicum of decent care. He was left to sit all day in a dirty diaper to the point of red skin at one. At another, someone pulled him out of a chair by one hand and tore his bicep muscle. Another left him alone in the shower and he fell. I finally quit my job to stay home with my precious father and we lived on my savings and his small SSA check. We were fine and both much happier for the next 9 years! I never regretted it. My memories of caring for my dad are gold to me. That’s what FAMILY means. Putting them in facilities is just extreme selfishness. We owe them better.
to bad she wasn’t an illegal, illinois has plenty of funds for those here illegally. illinois spent more on illegals last year than they did on roads, foster kids, the elderly and the arts.
My husband and I moved my 93 year old mom in with us. She didn’t want to move from CA to rural WA, but realized she couldn’t live alone. We took turns caring for her (while working full time) and hired a neighbor for a couple of hours a day to make lunch and visit. She died at 95, but knew she was with people who loved her. Luckily we have grown children living nearby who would visit and get to know her. It’s not an easy problem.
Very sad but what I get MAD about is there’s always enough money for illegals to rob and steal from us, demonrats can shut down government but they still get paid and go on vacations, most have security paid by taxpayers and I could go on and on. But who cares if ur old and can no longer take care of ur self.same for our Vets. Both republicans and all demonrats don’t care. Ur problem.
As a presumed, intelligent society, that was inspired for freedom and realized by building on Judeo-Christian principles, it must be asked, “What have you done, my good and faithful servant?” Nothing is more precious than life. And then to have that very life adorned with care, respect, compassion and a gentleness, that only comes from the interaction of a healthy humanity. It is shameful that we have lost sight of the treasure of life, trading it out for filling every nook and cranny of our vacant hearts, only to be deceived into filling it with an insatiable hunger of bragging rights- to laud over our fellow man. Progress is beautiful. Progress is natural but not taking accountability has a steep price-factor-index. The US Constitution requires its success to be bound by a fair and free press. And, at one time there were good journalists who, in turn held public officials accountable. And the involved public would watch, listen and monitor. It’s sad and troubling what we have allowed to happen – all at the hands of progress. And it is very sad that we do not uphold the treasures of our elderly. Shame on us and shamed we shall be.
I’ve read horror stories about MAID in Canada, including a story of an 85year old lady who went to the ER because she was having a little back pain. She said the first thing out of the ER doctor’s mouth was an offer of assisted suicide under MAID, not let’s find out what is causing your back pain. Given the number of states in the US who have also adopted this culture of death, I fear this embrace of death will become the government preferred approach for elderly folks in these situations.
Maybe we can’t expect to have it both ways. We want big government or we want independence from big government. I know this isn’t a soft approach, but it seems that your mom wanted to be in the rural community with city resources. I am pretty sure in the earlier days, someone would have taken mom to live with them. Your mom has lived a very long time, should the responsibility really fall to someone else to provide for her?
So SAD, but TRUE…….
I am entirely sympathetic, as I have a 98 year old Uncle in a similar circumstance. We finally had to place him in a good assisted living situation. Not ideal, but the best we could do for him.
How about the elderly whose children abandon them? My daughter “dumped” me when I experienced a sudden health crisis. I was a doting parent. My life was saved by a kind, caring pharmacist. I am currently in remission- haven’t heard from my daughter in 12 years. She is a married, college professor.