In the end, where did hard work and determination get the Long family?

rhonda-and-dad

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?

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Judy took care of her parents and husband. But who will take care of Judy?

judys-parents

This piece originally was published before the presidential election for Caregiver Relief, which no longer is live. Reprinted here with permission. Special thanks to Diane Carbo and Judy Morton.

By David Heitz

You will find that among caregivers, we don’t hesitate to just step right up when we know someone we love very much needs help.

In the beginning, it may not seem like we’re doing much. Frequent stops at mom’s or dad’s home just to say “hello,” to check and make sure that the house or apartment is not in disarray, that he or she has food and is eating, that they still are able to laugh and joke.

Our thanks? Often, we are accused of “just mooching.” Surely our motives can’t be pure, particularly if mom or dad ever helps us out.

Even when our parent becomes incontinent, combative, and the constant falls begin. Even when some sort of terminal diagnosis is made, or a dementia-related illness, the feelings of ugliness between siblings usually are set in stone by then. We are insulted, because instead of a thank you, we are treated like freeloaders.

Related News: Caregivers for elderly parents are the new ‘working moms’

Our non-caregiving siblings so truly want to believe that we are somehow to blame for the financial drain the disease took, that forgiveness (for what, I am not sure), or an apology on their part often never happens.

I remember early on after dad’s diagnosis of behavioral-variant frontotemporal degeneration going to our local elder ombudsman organization, which I can only describe as worthless using the nicest of terms. They told me, “We don’t do that” when I asked for a family counseling referral.

When our parents are finally dead and buried, it doesn’t matter. We know we did the right thing. And our parents certainly knew all long. But it doesn’t mean we don’t want all of America, including those running for president, to know what sorts of suffering we endure and why it has to change.

Caregivers often end up financially devastated

“When my dad was diagnosed with cancer, I was 31, working as a career office temporary,” Judy Morton tells Caregiver Relief. “At first, I visited him whenever I could, after work and on weekends. One day, a nurse told me that my dad said he always felt better when I was there, because he knew that I would take care of anything that came up.”

Shortly thereafter, Judy took a leave of absence from the agency and spent the next months taking care of her dad, both in the hospital and at home. “It created a financial hardship for my husband and me, but neither of us regretted that for a minute. I was able to give my dad comfort and security, and I was able to give my mom the gift of just being with him without having to do the hands-on care.”

Soon Judy became the “default” family caregiver whenever anyone needed help. And so it goes.  “Since for most of that time I was still working as a temp, and I also spent 10 years behind a chair as a hairdresser, it was easier for me to take off when needed,” Judy explained. “And I don’t have children, so my sisters felt it was ‘only natural’ that I should do what needed doing, since I didn’t have a ‘family’ to care for. My husband did not appreciate this attitude from them at all.”

And the next thing you know, Judy was caring for her uncle too, her mother’s youngest brother. Because of her, he got to spend a final two weeks in his home before dying in a hospital.

And mom? Well by this time she was becoming more and more frail and developing memory issues. “After consultation with her lawyer, mother granted me Power of Attorney.”

Sibling v. sibling: A binding caregiver contract can keep families out of court

In the end, mom had Parkinson’s. She suffered a massive stroke in the hospital, along with pneumonia. Eventually she died from a fall.

“As her Parkinson’s had worsened, and even before it was actually diagnosed, I was having to take more and more time off from work to take mother to medical appointments and deal with her finances,” Judy explains. “I lost a week of work when her in-home aide stole her credit cards, checks, and car.

“Canceling the cards, getting copies of everything, writing letters…It took me 13 months to get it all finally settled – and we could not get the police to arrest (the alleged perpetrator).”

Next came the estate, which often is the even uglier fight after the long caregiving battle. Judy tried to go back to work in 2009. She was offered a job as a file clerk for $9 per hour.

Read more: The people caring for your parents live in poverty

And now her husband has cancer.

I’ve been a journalist for three decades, and am quite the cynic. But folks, stories like Judy’s are anything but fiction. Our presidential candidates need to wise up to the fact that we have 11,000 Baby Boomers per day turning 65, and a nation ill-equipped to care for them. What this means is that a generation of caregivers are going to be the next burden, broke from caring for their parents, unable to care for themselves, fraught with mental problems, substance abuse problems, and broken families.

Please help.

Read more: Caregiving at what price? Coping with drugs or alcohol while taking care of mom or dad

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Oprah happiness guru Shawn Achor: Tips for family caregivers

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This piece originally was published on Caregiver Relief, a site which no longer is live, about two years ago. Reprinted here with permission.

By David Heitz

As caregivers, we often experience life stuck between a rock and a hard place.

Our loved one with dementia cusses at us when we try to help them. Our siblings or our relatives accuse us of having “a free ride” when we move in with our parent. As we’re making sure mom or dad doesn’t tumble down the basement stairs, burn the house down, or otherwise harm themselves, somehow our relatives think it’s just one big party.

We cook our loved ones’ meals, pick them up off the floor, corral them back inside the house when they go out the back door at 3 a.m., and even mop up their waste. Frequently.

It’s so darned hard to stay positive. We often end up financially drained when the caregiving process is over, on top of grieving for our loved one who may have passed or, heaven forbid, ended up in a facility. We have every reason to be angry.

On Wednesday I had the pleasure of interviewing Shawn Achor, Oprah Winfrey’s happiness expert, on the telephone. Achor is a Harvard happiness researcher and author of the book “The Happiness Advantage.”

Achor and Buick Regal created a special motivational podcast for Buick’s “24 Hours of Happiness Test Drive” content series. I spoke with him on the telephone as he was in Los Angeles for the project.

“I suffered two years of depression,” Achor said. “So many people think of those who are depressed as evil, dark, brooding. But the brain actually takes more thought to process anger and threat than to create happiness.”

So go ahead. Be angry.

“Instead of squashing the anger, think about it as a useful tool,” Achor said. “If you’re angry, your body is experiencing a feeling or emotion that easily can be translated into energy. Squashing anger actually can be counterproductive. If you feel upset, try to channel that toward a positive or productive outcome.”

That means taking action to change whatever is upsetting you. For caregivers, that’s often isolation. “The opposite of happiness in our research is not unhappiness. If we’re lonely, (anger) can actually cause us to extrovert.”

A good predictor of long-term happiness are our social connections, Achor said. “Researchers at Harvard demonstrated a .7 correlation between social connections and happiness, which may not sound like much but that’s actually a higher correlation than what we see between smoking and cancer.”

You may say, “Social connections? Hogwash!” We’re stuck in the house with our elderly or impaired loved ones. We never get out.

But we don’t even have to. Research shows that a meaningful social connection can be as simple as an email, a text, or a five-minute phone call. “Caregivers always are trying so hard to give social support, what they always forget is there has to be give and take and they have to receive social support as well,” Achor said.

“Just two minutes composing a positive email can create a meaningful social connection,” Achor said. “Some people go and see 100 people at a bar but it has no meaning. But deeply connecting to someone you have provided care for does.”

And despite the strife I personally have been through, I believe that to be true. Before caring for my dad, particularly in his own home, I’m not sure I believed I had the sort of true meaning in my life – indeed, happiness – to create the sorts of changes I needed to make. Those changes have included going back to work with the most meaningful writing gigs I ever have had in my entire career, and also getting sober.

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I never expected either to happen.

How Joan Lunden has inspired me to get serious about elder advocacy

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This piece originally was written April 21, 2015, for Healthline Contributors. That site is going dark, so this piece is reprinted with permission here (many thanks to Healthline for the heads up and the permission to reprint). My father’s assisted living facility had just changed hands when this was written, and things took a severe nosedive shortly thereafter. I urge everyone to attempt to care for their loved one at home if possible. I realize that sometimes it is not.

By David Heitz

I met Joan Lunden face to face Friday!

I attended a meet-and-greet fundraiser after she spoke to an enthusiastic crowd at the RiverCenter/Adler Theatre in Davenport, Iowa. Both events raised money for Gilda’s Club of the Quad-Cities – the community in which I live – and were sponsored by Genesis Cancer Institute.

When I heard that Joan was coming to my community, I knew I just had to meet her. A publicist for Joan reached out to me last September and offered me an interview with the legendary television newswoman. Just days before I interviewed Joan for this piece on her work advocating for quality senior living, she revealed on “Today” and her alma mater “Good Morning America” that she has breast cancer.

I thought, “Why would someone as famous as Joan Lunden work so hard during a time like this?”

The explanation she gave Friday keeps playing over and over in my head. “I realized, ‘Joan, you have this amazing platform after being in people’s living rooms and bedrooms for so many years,’” she told one news reporter. “You can either step up, or not.”

so understand what she means. While I can’t relate to the fear or despair that can come with a cancer diagnosis (although I did lose my mom to breast cancer 20 years ago last month), I can relate to the fear and self-pity associated with having a parent lose their mind before your very eyes.

The issue I spoke with Joan about for my story last October – preparing for the possibility that a loved one may have to move into an assisted living facility – could not be more personal to me. Like so many Americans my age, Dad’s dementia came on sort of suddenly in terms of when it got to be more than I could handle. I had checked in on him for many years, and lived with him for one year. When it became too much and I dialed 911 two years ago, the drama and anguish that followed for several months afterward became more than I could bear. While my dad ended up getting outstanding care, and continues to get it today, it has not been without struggle – lots and lots and lots of struggle on my behalf as his advocate.

At one point, managing the situation became more than I could handle. I cried out on social media in a drunken rage about some of the horrible things that were going on as it related to Dad’s dementia, my concerns about the quality of the care he was getting, and even some of my personal relationships with family and friends.

The day after the explosive, blunt posts, I woke up. Like Joan, I thought to myself: “Everyone is watching you. You’re an intelligent person. Are you going to feel sorry for yourself?”

And, in my case, drink myself to death? Or was I going to get sober, step up to the plate and be my dad’s advocate?

I chose the latter. The day after Memorial Day marks one year since I put down the bottle for good. And while I may not be famous like Joan, I do think it’s fair to say I have a way of telling interesting stories, as well as access to some great platforms like Healthline.

So while talking about Dad’s dementia is tough, I’m going to do what Joan has done. I plan to pour even more of myself into issues related to elder advocacy and helping others prepare for Mom and Dad possibly needing to go into “the place” someday. In addition to Healthline, I hope to soon share my experiences about being Dad’s caregiver with even more sites and publications.

How do you know Mom has dementia and isn’t just forgetful? How can you be sure Dad is getting good care at the memory-care facility? What are some warning signs that Mom isn’t in the right place for her? What do you need to know about signing contracts when choosing a place for your parent? What should you think about when choosing a power of attorney? When a parent with dementia goes on hospice, what does that mean, exactly?

Believe me, it’s not the same as putting a parent dying of cancer on hospice, heaven forbid. There are lots of important differences. And a few shocking things everyone needs to be aware of.

I have all of that information, and it’s time I start sharing it. On top of my personal experience (and battle scars), I’ve become a bit of an expert on the topic of elder care myself after talking to so many prominent national authorities like Joan. I’ve spoken with U.S. Assistant Secretary of Aging Kathy Greenlee about elder abuse being a growing national problem. I’ve interviewed former ’70s pinup model and television bombshell Loni Anderson about caring for her parents with COPD. I’ve reported on how corporate America needs to acknowledge that people caring for elderly parents are the new “working moms.” I’ve told the story of how caregivers save their loved ones and government-funded health programs billions of dollars every year. And just last month I reported that home-care workers for the elderly are living in poverty.

As a journalist, I’ve always thought, How can you expect others to share if you don’t share yourself?

“When you’ve got such a platform, you can either step up to the plate, or not.”

Joan said it again at the meet-and-greet.

I’m stepping up, Joan. Thanks for being an inspiration.

Welcome to DavidHeitz.com! Here is what my blog and web page is all about

I get excited just saying it: DavidHeitz.com. 

DavidHeitz.com. DavidHeitz.com. DavidHeitz.com

Not even five years ago would I even have dreamed that one day I would have my own website bearing my own name — my very own brand, if you will.

For starters, I never would have guessed I would even get the domain DavidHeitz.com. There is another journalist named David Heitz (and we are even the same age, both with dark hair) right down the road, in Chicago. There’s a famous David Heitz winemaker in Napa Valley. There’s a big real estate agent named David Heitz in California, too.

But there’s only ONE DavidHeitz.com! And I’m thrilled it’s me.

So why did I purchase the domain and the software to create my own site and my own blog? Well, the short answer is, I’m writing a book, due out next year. Every author needs to have a website and a social media following. The working title for my book is “Sober Caregiver, Solitary Confinement.” It not only works literally, but figuratively too. On many levels.

The social media part I’ve been working on for about two and a half years now. Today, between David Heitz Health on Facebook, @DavidHeitz on Twitter, plus LinkedIn, Google Plus, and a tiny presence on Pinterest, I have more than 7,000 followers. And it’s growing pretty fast.

I admit it now — I have a story worth telling

When people talk about writing, so much focus is placed on the craft of writing. No doubt, that is very important. But in this age where, let’s face it, anyone can be a publisher, I think what you have to say is even more important than how you say it.

So who am I? Well, a guy who was an alcoholic and/or drug addict (always one or the other when not both) for about 30 years. I grew up in a violent home. I lost my mother to breast cancer at age 24 after she had divorced my dad the second time.

I found out in my early 30s that dad had Alzheimer’s disease, which turned out to be a misdiagnosis. A few years back, we learned it in fact was a very rare brain disease called behavioral-variant frontotemporal degeneration. You can read all about that by clicking here.  Essentially it causes people to be very mean, and otherwise behave outrageously. Toward the very end their mind disintegrates to the point where they lose control of bodily functions, the ability to walk, talk, and swallow. And then they die.

So I got sober two and a half years ago when dad went into a memory care facility. I knew I had to or I was going to die. Like so many families that go through this disease, ours fell apart. Nobody cared about my dad except for me, and I cared about him very deeply. I demanded quality care and respect from the people who were paid outrageous sums of money to make sure he was safe and I dropped in quite often to make sure they were doing just that. I wasn’t always nice when I felt he (or myself) were being treated poorly.

Even as a teen, my friends used to say, “You need to write a book about your crazy family.” I always said, “Oh, my life is not that interesting.”

Famous last words.

Jailed for reporting an intruder at dad’s facility

I even went to jail, stripped naked, held on no charges at all, for two days, for raising my voice at dad’s memory care facility. You can read all about that by clicking here. There’s a whole lot more to that story that I never have told (other than to authorities), and it will all be in the book.

I became very sick inside the jail and truly thought they were going to kill me, or that I was going to die from a heart attack based on what was happening to me in there.

When they did finally let me out, I  spent two nights in the hospital. I learned some chilling things about my community. Things that, in truth, I had heard about for many years as a reporter and editor for local news organizations. But never did I think I would get an up close and personal experience with it. Maybe they wanted a reporter in there to see what was going on for himself. Who knows. It was wild stuff, no doubt about that.

I have written about all of these things piecemeal in various columns for Healthline Contributors, Caregiver Relief, and LinkedIn Pulse. I wrote hard news stories for two years as a reporter for Healthline.com, the fastest growing health website in America. I’ve written about addiction and recovery, caregiving and elder advocacy, and many other health topics, namely HIV and Hepatitis C.

While I do not have HIV or Hepatitis C, in many ways, it was that reporting that served as my bread and butter when it came to paying the bills and my re-entry into the world of writing (and working, for that matter). I’ve gotten away from HIV reporting the past several months, and I may explain why in a future column. More importantly, I plan on bringing  back my HIV reporting soon — today, in fact. Check out my other blog post for breaking news today that will be of great interest to long-term survivors of HIV.

In fact, I pounded out this introductory column about my blog and my new website — even though the website isn’t exactly how I want it yet (I have no idea what a widget is, for example) because of that exciting HIV news. Expect my HIV reporting from here on out to be limited to stories regarding long-term survivors, a cure, and a vaccine. The other stuff I’m not even going to touch anymore.

Living with Post-Traumatic Stress Disorder

I do suffer from some personal health issues. Many years ago I was misdiagnosed with bipolar disorder. In fact, I was a drug addict. Mixing the bipolar drugs with illegal drugs and booze no doubt did plenty of damage, and I went through bouts of depression where I would cry and not get off the couch for months at a time.

When I got off the bipolar medication things began to turn around, yet the hard drinking did not stop, even though I had quit using drugs and quit hanging out with the bar and drug crowd. Boozing it up by myself, at home alone, I knew then that indeed I was an alcoholic. I could not get to sleep otherwise, the anxiety associated with caring for dad and fighting with my family was so bad.

When I was violently assaulted by someone I knew, that was my “rock bottom.” I stopped drinking and by the grace of God hope I never take another sip. Things have been on the upswing ever since.

But I do live with PTSD, not only from that violent attack more than two years ago, but also from being taken to jail last year (almost exactly to the anniversary date of the assault). I also endured mental abuse inside the jail, and just the sheer disappointment of knowing our community runs a jail like that probably will forever linger.

But things are improving for me every day, and I have found that the best way to take care of myself is to completely isolate myself from the people of my past, including my own family. I have been told I should move out of this town, but I don’t want to do that. I enjoy living in my childhood home, which I now own, and I have made the decision to stay put.

So, what can you expect from this blog? Well, hopefully a lot of positive things. I recently began to write about travel (and plan to do some traveling myself soon), pets, eating out, and hopefully soon, home improvement. I mostly pay the bills writing branded content related to addiction/recovery and home care for seniors and people with disabilities. Those stories will continue to appear on my Facebook page, David Heitz Health. Be sure to like my page if you have not already!

So I have lots of great things happening in my life and am a very blessed man. I’m so excited to launch this new chapter — DavidHeitz.com — and hope you will continue to follow my work, as well as my path to finding happiness again.

All the best,

Dave