Your mom or grandma is extremely curious about medical cannabis

Image courtesy Alex Harvey via Unsplash

Elderly people are smart.

Elderly people have bodies with lots of wear and tear. They ache, and they want relief.

And at their age, they could care less about the stigma the medical establishment perpetuates about medical cannabis.

“Honey, give grandma a hit of that!”

You know you’ve heard it.

Now, let’s talk about it. Seriously.

Dispensary patients no different from who you see at Walgreens

When people ask me about the medical marijuana dispensary where I am registered, which is all the time, I always have the soundbite ready.

“It’s mostly elderly women when I go in the mornings,” I tell them.

In fact, it could be the same people you see in line at Walgreens. Naturally, that always is dominated by elderly people picking up their medications.

So, it’s only natural that elderly people are a big part of the clientele at medical cannabis dispensaries.

Although there are many chronic conditions that might qualify an elderly person for a medical cannabis card in their state, most use it to seek relief from arthritis and inflammation-causing conditions in general.

In fact, even the medical establishment admitted in a recent study that cannabis is effective at treating nerve pain.

Senior bus trips to qualifying docs in big cities?

When I tell people about all the seniors at the dispensary, the reaction from seniors themselves always is, “Yep, yep!” It’s almost kind of amusing to me. Again, I’m not sure why, other than the fact that I love how they could care less about the stigma attached to cannabis. Which to me, just says so much.

The next thing they always tell me about is a friend somewhere who is able to get edibles. “They have cookies, candy, even coffee.”

I always say, “I know, they have that at the dispensary I go to in Milan (Illinois)!” To which they light up upon hearing, especially if they’re local.

Perhaps the Quad-City Times Plus 60 Club should plan a bus trip to The Healing Center in Chicago, where I got my  medical cannabis card.

“Join the Quad-City Times’ Bill Wundram and KWQC’s Paula Sands on a delightful trip to Chicago, where seniors can apply for cannabis cards. You’ll learn about concentrates and edibles while watching ‘Reefer Madness’ aboard our deluxe motor coach. Cost is $800 for the day trip which includes the cost of your cannabis card and seeing the doctor for the two required, back-to-back appointments.”

Ha!

I’m kidding of course, and yet, it would fill up in a day. And it really would cost about $800 if you’re going to add in the bus cost and a way for whomever puts the trip together to make money. It cost me $600 to drive myself to Chicago, see the doctor, and get the card.

For most elderly people, the biggest hurdle to medical cannabis likely is cost.

It’s not for a lack of interest, that’s for sure. In fact, I interviewed for a job on Upwork a while back where I would have been going into assisted living communities in California and educating seniors about medical cannabis.

I may have ended up being offered the job, but I pulled out when “Tell us more!” during the interview process turned into me saying, “I’ve told you enough already! My rate is $27.50 per hour!”

 My interview for a job explaining cannabis to seniors

They must have liked what I had to say, because they sure wanted more. But the Upwork interview process easily can turn into free work, and I don’t play that.

Here’s what they asked me, and what I told them:

What would your main message be to senior homes on why they should allow us to be present?

I said: If the seniors who are mobile and still drive, or have lots of friends who visit, are not educated about what strains may help them if they do get the card, they could self-medicate willy-nilly. Marijuana is medication and the seniors need to understand that no two bowls of weed are necessarily the same. If they are not educated about indica, sativa, CBD (I’d now add terpenes) and THC in an era of widespread availability, the results could be disastrous. No two strains are appropriate for all people.”

They asked: What obstacles do you foresee with contacting senior homes regarding presenting cannabis and how do you plan on overcoming this?

I said: Some may flat out refer to federal law just to avoid the entire conversation. So, it’s important to reassure them first and foremost of what the laws are (in their state and whether there is a logical federal threat…which it increasingly appears there might be, at least to me). Second, they need to be convinced…that it’s important to be ahead of the curve…as it pertains to medical marijuana. It is here to say and at some point, residents are going to start inquiring about keeping it in their units.

Worse, they could start getting it off the streets from their children and grandchildren as the green movement sweeps the nation.

Half of all medical cannabis cardholders are parents, study shows

In terms of hard statistics to back up my theory about the mature medical cannabis market, I found a recent HelloMD study that was reported by Marketwatch. HelloMD is an online service that connects people seeking a medical cannabis card in qualifying states with live doctors. It’s pretty incredible.

The Marketwatch report, headlined “Mom and dad make up 45 percent of medical marijuana patients,” found:

“Nearly 85 percent of medical marijuana patients had some form of higher education – nearly 15 percent held a postgraduate degree – and about 45 percent were parents.”

The survey included responses from 1,400 patients.

I’m not the first blogger or news organization to report about or pontificate on the senior medical cannabis market. And it’s important we do so, because above all, the safety of elderly people in the medical cannabis era is paramount. Full-on federal legalization is inevitable at some point.

Preaching the plant’s benefits to retirement communities

If you think this job I applied for sounds unbelievably wacky, it isn’t.

CBS News reported recently about a cannabis club at the Rossmoor retirement company in Walnut Creek, in the San Francisco Bay area. Its president, Renee Lee, is quoted.

“We caution, especially the seniors, to stay away from edibles, and really start slow,” she told CBS News. “We start with low dosage, we start in the early evening, telling them not to drive, not to mix alcohol. There’s a lot of cautions, a lot of education that comes along with it.”

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This is interesting to know, because the first thing most seniors ask me when they learn I have a cannabis card is whether I’ve tried the edibles.

Many seniors swear by edibles. In fact, in the same CBS news story, 68-year-old Sue Taylor describes how she uses cannabis gummis for sleep and pain.

What did Sue, a retiree, used to do? Work as a high school principal. Her son, who’s in the pot business, introduced her to weed.

Scientific American on cannabis use among the elderly

I think I would really feel like I had arrived if ever I landed a paid assignment with Scientific American.

They are absolutely the best at what I like to think I try to do.

They recently reported on research published in June in the journal Nature Medicine. To quote their prose:

“Picture the stereotypical pot smoker: young, dazed, and confused. Marijuana has long been known for its psychoactive effects, which can include cognitive impairment. But new research…suggests the drug might affect older users very differently than young ones – at least in mice.

Instead of impairing learning and memory, as it does in young people, the drug appears to reverse age-related declines in the cognitive performance of elderly mice.”

The esteemed publication quotes Andreas Zimmer of the University of Bonn in Germany. When young mice were given low amounts of THC, they could barely even find a safety platform in a water maze.

But when elderly mice were given THC, they could find the platform as well as untreated young mice. Without THC, the elderly mice had far more difficulty finding the platform than untreated young mice.

“The effects were very robust, very profound,” Zimmer said.

Although we badly want to when it suits us, but know better when it doesn’t, we can’t immediately convey mice results to humans in any medical study. Costly clinical trials are needed.

Such trials generally are funded by Pharma, which has some of the deepest pockets on the planet. Pharma’s not in the business of funding cannabis trials, of course, because it’s not good for business.

But what makes Scientific American so special is that it goes on to report the “mechanisms of action” – why it may be that THC affects elderly mice in this way – in ways that are easy to understand. You can check it out for yourself right here.

Cannabis as a treatment for Alzheimer’s?

You may also have heard in the news lately that cannabis may help people with Alzheimer’s. This is in part due to the CBD found in cannabis.

A recent Australian study, a review of 27 previous studies, showed that CBD may help with several neurological disorders and even schizophrenia. The study was published in the journal Neuroscience and Biobehavioral Reviews.

“From this review, we found that CBD will not improve learning and memory in healthy brains, but may improve aspects of learning and memory in illnesses associated with cognitive impairment, including Alzheimer’s disease, as well as neurological and neuro-inflammatory disorders,” project leader, Dr. Katrina Green said in a news release. “Evidence suggests that CBD is neuroprotective and can reduce cognitive impairment associated with use of delta-9-tetrahydrocannabinol (THC), the main psychoactive component of cannabis.”

As for schizophrenia, “CBD may be able to treat some of the symptoms of schizophrenia that are seemingly resistant to existing medications,” Green reported. “In addition, CBD treatment did not alter body weight or food intake, which are common side effects of antipsychotic drug treatment.”

In fact, Green learned CBD cancels out the harmful effects of THC in people with cognitive impairment. This has long been referred to the “entourage effect” of cannabis. Part of its appeal is how its two medicinal compounds, plus terpenes, create a powerful medicine with very few, if any, negative side effects in most people.

Yet we’re still fighting its use while turning even seniors into addicts with opioids and anxiety medications cranked out by Pharma. Not to mention that by denying seniors cannabis, we’re giving those with alcohol problems even more reason to medicate anxiety and depression with booze. When used in combination with prescription medications, in particular, the result could be death.

To end on a serious, responsible and balanced note, I used to write for a Fortune 500 chain of addiction treatment centers and psychiatric hospitals. Substance abuse among the elderly population and the caregiving population is very, very real. If you or someone you know might have a substance abuse problem, check out these stories I wrote for Foundations Recovery Network:

Caregiving at what price: Coping with drugs and alcohol while taking care of mom and/or dad

Substance abuse where you might not expect it: Older Americans getting drunk, high too

 

Chapter One: Dad and I reclaim the property

“Jeezus Christ! What the hell is going on!” I screamed to dad as I pulled up to the house, admittedly excited to be moving in despite the inevitable battles I innately knew were ahead. “You better not chop down that God damned tree!”

Undoubtedly, I had been out all night drinking the night before. I had been totally unemployed for a year, as checking in on dad had become too stressful and I was completely burnt out with my newspaper job.

Honestly, I had thought to myself more than once, “If you’re not going to report on things you know about that need to be reported because of personal relationships, you need to get out of the business.”

So that’s what I did.

Branches were falling from the maple tree out front of what was the family homestead until mom died. It had changed hands just twice when dad got it back, almost 30 years – three decades — to the day mom got rid of him.

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Dad and his best friend Jack Long dug up the tree down by the Mississippi River and transplanted it into the front yard when the room addition was built in 1976. I remember it grew very fast, and in a couple of years I was enjoying climbing it. Now I could not even reach the lowest branch if I wanted to. The tree is massive.

Dad had no intention of cutting down the tree. In retrospect, I’m sure he knew hiring a big crew to top that monster was not something I would make a priority, or possibly even be able to afford. He took care of certain things immediately.

Like re-siding the garage. The garage looked like hell when dad bought the house back for more than seven times the price he paid for it in 1963.

Dad and I had a wonderful first six months back in the family home.  He began to fall from the day we moved in. In fact, I found him lying on the floor when I moved in the day after he did.

He would fall out of the lawn chair in the front yard. My brother and I both thought maybe he did it on purpose to get neighbors to talk to him.

For me at least, it became apparent by the seventh month that was not the case, and something really, really frightening was going on with my dad. In fact, he had a horrible, extremely rare brain disease called frontotemporal degeneration, behavioral variant, also known as Pick’s Disease.

Learn more about the rare brain disease that killed my dad

My dad, who had saved my life so many times, soon would meet an unthinkable finale to half a lifetime of suffering.

In retrospect, some might argue not soon enough. And did.

About a year after dad and I moved in, dad was taken out by paramedics, never to return. He had chased me with a butcher knife and I had called the police, but only because I thought he was going to fall and spear himself. The night before, he had shoved towels and cooking utensils down the toilet.

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And as he was running through the house with the knife – remarkably without a walker, as though Lazarus had stopped by – smoke was pouring out of the kitchen wastepaper basket.

Once again, he had thrown a burning cigarette in it.

My poor cat, an incredibly spry 18 years old at the time, used to hide in the basement. Dad loved the cat and she ignored him, so he would cuss her. Later, I found out he was feeding her cookies when I was at the bar at night those first six months.

It would fast become a terribly exhausting, scary and frustrating situation. Dad would howl at the moon at night. He would wake me up and order me to go across the street to the church and turn their music down. There was no music.

This should not be surprising, as he was having many odd flashbacks in the house. In 1984, he walked across the street to the church once, interrupted service, and told the priest that someone needed to move their car so my brother could get his boat out of our back yard.

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I call my neighborhood Redneck Ritz.

It was incredibly surreal to be living with dad, in the very house I was brought home to from the hospital. The hospital right up the street, in fact.

The hospital has a helipad. As a kid, I always thought the helicopters touching down at the hospital were the coolest thing ever. That, and the airplanes flying overhead, so low if you squint it feels like you could touch them. The house still is directly in the flight pattern of Quad-City International Airport. Which is not a big deal, despite the “international” in its name. The Quad-Cities likes to be bigger than it is. Almost 30 members on the Rock Island County Board, after all, in a county of 130,000 or so people.

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I knew on move-in day that as profoundly bizarre that what dad had done might seem to some, it wasn’t at all strange to him. And by the end of the first week, it wasn’t strange to me either.

Dad, at age 72 and already with significant mobility challenges, incontinence and dementia, had purchased the family home he lost to my mother in their second 1984 divorce.

Yes, from each other. They married and divorced each other twice.

And I inherited half of the same house twice. It would have been a lot more economical had I kept it the first time I inherited it, when mom died, but as a 24-year-old living in Los Angeles in 1995 I was not about to move back to Rock Island, Ill.

I might have been on to something there. But we age, we make choices, and I chose the stability and the warmth of my family home, even if unspeakable things have transpired here. Not only in this house, but in the unspeakably corrupt community in which I live.

Lots and lots and lots of abuse.  I lived almost an entire life of abuse, and for many years resumed being a victim – and playing a victim – when I returned to the Quad-Cities from Los Angeles to care for dad a decade prior.

Little did I know my real troubles would begin once I already had been a year on the straight and narrow path nobody ever thought I would find. Clean, sober, and laying naked on a concrete slab in solitary confinement in the Rock Island County Jail, held on no charges at all.

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Dementia-friendly America cities and states are changing lives for caregivers

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Editor’s note: This piece originally was published July 26, 2015, on Healthline Contributors, which no longer is live. Reprinted here with permission. I will be following this story up very soon, as Dementia Friendly America has made great strides in the past couple of years.

By David Heitz

For people with dementia, Minnesota may be the next best thing to heaven.

That’s because 23 cities in Minnesota are “Dementia Friendly America” (DFA) communities, a private-sector effort that brings together first responders, churches, business owners and local governments to learn about the special needs of people with dementia. Eleven more Minnesota communities are in the process of becoming DFA communities.

The program means people with dementia can stay in their homes longer. And that’s why, to me, the nationwide expansion of the program was some of the best news coming out of the White House Conference on Aging earlier this month. Soon, these communities also will become DFA communities: Tempe, Ariz.; Santa Clara County, Calif.; Denver, Colo.; Prince Georges County, Md.; and Knoxville, Tenn.; and the state of West Virginia.

For families like mine who have a loved one with dementia, this is an answered prayer.

Elderly people with dementia are faced with many well-known challenges – confusion, wandering, an inability to manage their finances, and the like. This makes them incredibly vulnerable.

Putting your life on hold as a caregiver, with little to no help

Their caregivers are faced with challenges, too. How do you care for your parent with dementia while also caring for your children? How do you hold down a job?

Many can’t. We often must quit our jobs. My dad is now in a memory care facility, and hopefully soon a nursing home, where he can get more intensive, appropriate care for his special needs. But those years I struggled to care for him myself, then ultimately quit my job, took a huge toll on my finances, my family and my own health.

In many cities, police, bankers, clergy and others don’t really know how to spot dementia.

Where is the line between “forgetful” and “dementia,” for instance?

“Becoming dementia friendly must be a priority for all of our hometowns in order to remove stigma, enable people with Alzheimer’s to come out of the shadows and engage in their communities, and help families effectively manage all that comes with the critical task of caregiving,” said George Vradenburg, founder of USAgainstAlzheimer’s, in a news release.

USAgainstAlzheimer’s worked closely with DFA to make the expansion of the initiative a reality. “This hometown Dementia Friendly America initiative sends a message to American families experiencing dementia: ‘You are not alone, we are your neighbors, we care about you, and we want to help.’”

When crisis hits, communities are not prepared

When it comes to just how serious the need is for something like Dementia Friendly America, consider this:

I am just one guy, in one town, who happens to have a platform for writing about my dad’s dementia and my experiences with it. But my family’s story, sadly, is not unique.

When I first moved in with Dad to care for him full-time, one of the first things I noticed was that he would call the bank every morning, confused about his balance. The bankers clearly knew long before I did just how bad dad’s dementia was. But how can they be expected to say anything without training? I’m sure they don’t want to be held liable for violating privacy issues either.

Second, the first time my dad became violent and unmanageable (Dad’s diagnosis is behavioral-variant frontotemporal dementia … his behaviors can be extreme), I called my brother and asked for help. My brother was not interested in helping me. Instead, he called the police, who showed up at my door.

The officer came in and showed extreme compassion. He could see what was going on – Dad was confused, I was in tears, and I was busy trying to clean up the house from several messes Dad had made in his rage. The officer wasn’t sure what to say. “What your brother called about isn’t at all what’s going on here, I can see that,” he said. He looked at me, appearing to be truly touched by the situation, and in the sincerest way suggested that when things like this happen, I go to the church across the street to pray. The church across the street has a “Perpetual Adoration” chapel, which, in theory, is open 24 hours a day. Of course, they can’t always find volunteers to staff it.

I was touched by his advice. Of course, those of us who care for people with dementia know that it gets to a point where we cannot leave our loved ones alone for even 15 minutes.

The police came again after that when I called them unsure about what to do. They told me about the local elder ombudsman, but my calls were never returned. The third time the police came my dad was taken to the emergency room, then a nursing home, and then placed in a memory-care facility, where he has been ever since.

You can read more about my experience with my dad’s horrible, rare disease, FTD, by clicking here.

Why My Neighbor Held Her Dead Cat for Two Days

Then, last Thanksgiving, I encountered another example of the glaring need for communities to be better equipped to handle elderly people with dementia. My next-door neighbor’s cat died. She was alone at the time, as her son, a veteran, had to go to Iowa City for cancer-related surgery. The police showed up at my door and asked if I could help my neighbor get her sick cat to the vet. I said of course, and the cop left.

But my neighbor’s cat was dead. She would not let me take the cat and bury it. She clutched it all weekend. The police came a second time, a third time. The elder ombudsman was called – no response. The officer called and even went to the church across the street – my neighbor’s church, with the chapel of perpetual adoration. No response, even after he reportedly banged on the windows for help.

Then on Monday, the elder ombudsman’s office and some other elder advocates showed up at my neighbor’s home. They coaxed her to give them the cat. These women buried the cat themselves. Then they placed her in a facility until her son came home. I rode the bus to the facility and visited my neighbor while she was there. To this day, it’s obvious she has no recollection of that weekend, which probably is a good thing. (Editor’s note: My neighbor’s son, the veteran who faced long wait times for lifesaving surgery at the VA, died shortly after this was written. His mother, sadly, died right behind him, alone, in a nursing home that ended up with all her worldly possessions to pay the bill, as well as her son’s bill. They both died in the county-owned nursing home, Hope Creek. The state of Illinois has taken so long to resolve all of this that her house still is not available for rent. The owner has gone months, now over a year, without collecting rent). A selfie of my dear neighbor Monica and I is below. She enjoyed sitting in the yard in the sunshine and was a wonderful next-door neighbor.

monica

More support could have kept dad at home longer

In a perfect world, I may have been able to care for my dad for a longer period in his home, which he’s so incredibly proud of (see photo above) if I had more community support. As for the veteran next door? He’s still battling his own health problems while taking care of his mother. It’s just the two of them, but now they do have home-care workers coming at least three times a day, from what I can tell.

My dad is in a facility, and I’m no longer allowed to see him. You can read about that by clicking here. I’m sure he’d rather be in his house, which he purchased for a second time in 2012 after losing it in 1984 when my mother divorced him. She died of breast cancer in 1995 (you can read my column about that by clicking here), and my brother and I inherited the house and sold it. I wish there was money to have three eight-hour per day registered nurses (or even LPNs) to care for him here.

Click here to go to the Dementia Friendly America home page. It offers an insightful video of why a Dementia Friendly America is needed and more about how it works. The page is under construction and will be updated soon. The Dementia Friendly America even has been taken across the pond to the U.K.

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Praise God: Reunited with dad today after 108 days apart

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Editor’s note: This column originally was published Sept. 1, 2015, for Caregiver Relief. Reprinted here with permission. Special thanks to the graciousness of Diane Carbo at Caregiver Relief. Dad died 26 days after this piece was written.

Praise God. I was reunited with my dad today after 108 days.

This photo is in the chapel of his new nursing home. He was born in this very building darned near close to 80 years ago, when it was a hospital.

Until a couple of hours ago, I never knew for sure if I ever would see my dad again.

Dad has frontotemporal dementia, and the last two plus years have been incredibly painful. You can learn more about my dad’s rare disease by clicking here.

I worked very hard to convince my brother to place my dad in the best-looking memory care facility I could find when it became painfully obvious that I could no longer properly care for him. Not only that, but the job of tending to him here and there over the course of 10 years, and then living with him full-time for one year, just about killed me. By the time dad went into memory care, I had quit my job, had a problem with alcohol that I could not shake, and wondered if life ever would get better for either one of us.

It did. I went to work as a health writer for Healthline.com two weeks after dad went into memory care. It has blossomed into a wonderful career in health reporting. Dad finally adjusted to the new place and actually did quite well there for a while. And I am now 15 months sober.

But when the facility changed hands several months ago, even shortly before then actually, things really began to deteriorate. I was not satisfied with my dad’s care. I complained a lot. When a new executive director was installed shortly before the change in ownership, it all went to hell in a handbasket. She and I never saw eye to eye.

And then the facility trespassed me. Me, the one who fought tooth and nail to get him in there in the first place. You can read all about that by clicking here. Sadly, it’s really not that unusual of a practice. I have heard from people around the country and around the world who have had the same experience.

It even has happened again, recently, in my own community, to a woman who goes to a church I formerly attended. She was barred from seeing her sister after complaining about the care she was receiving.

As for my story, it’s all water under the bridge now. Memory care is a social model; people who need medical attention or have special needs really have no business in such places. It was clear after six months that he did not belong there. But instead of moving him, we agreed he would go on hospice so that the facility could get extra help on Medicare’s dime.

That turned out to be a bit of a nightmare. You can read what happened by clicking here, if you do not follow my columns regularly.

So when I walked into dad’s new nursing home today – where he has a beautiful, two-room suite – he looked up and said, “Oh yeah, I know you.” He said to the nurse, “That’s my friend.”

He thought I was Sonny Coleman, an old friend of his. But then he remembered who I was.

It marked the first time my dad, brother and I had been together in what would have been two years this Thanksgiving. Even with his FTD, dad was doing pretty well today. He kept saying, “We’re all a bunch of losers.” He was trying to make a joke I think. The aphasia was pretty bad. He was stuttering and unable to come up with words.

But after a couple of hours he was doing better. When the nurse tested his blood sugar and it was 298, she had to give him an insulin shot. At first he started yelling, but she had just the right touch with him. She spoke to him while she injected him, and he just smiled at her and didn’t even flinch.

When it came time for dinner, they brought him tacos. He seemed content with that. He asked the CNA, “Is this a $5,000 taco?”

LOL.

After a couple of hours, I left. I told him I would see him tomorrow. He said, “I’m glad we’re back to that again.”

He has gone downhill a bit mentally since I last saw him, but physically he seemed more robust than I expected. I wasn’t too happy to learn the memory care facility had lost his teeth…again. But I know that the nursing home where he’s at is very much by the book, and they are going to make sure his needs are met to the letter of the law. I have no doubt whatsoever about that.

I’m at ease for the first time in nearly four months. I know it’s not going to be a cakewalk…moving someone with dementia never is easy. But he seems to sort of know what is going on and seems OK with it.

Before I left, he said, “Hey, I went to the foreman the last time I saw you. I did.”

A John Deere retiree, he makes lots of “shop” references. That was his way of telling me he wasn’t happy with what went down that day back in early May.

Thank God it’s behind us.

I can’t wait to see dad again tomorrow. Praise God.

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Elder care facilities: Bermuda Triangles for your loved one’s teeth

teeth-relief

This piece originally was published Aug. 23, 2015, for Caregiver Relief. After I was trespassed from seeing my dad for reporting an intruder at his memory care facility in June 2015, his dentures went missing the next day (they were lost most every day and I would conduct my own “shakedown” of his apartment, often finding them under the bed). I have this in writing from an employee of the memory care facility. So, my dad had no teeth there for 108 days. My brother claims the facility’s director told him Five Star Senior Living does not have insurance for such matters, and therefore they refused to replace his teeth. When dad and I were reunited thanks to the great work of the state of Illinois, dad proclaimed, “There’s my friend!” when I walked into the new nursing home. The second thing he did was point to his mouth and say, “Teeth, teeth.” I did manage to get dad to a dentist and have impressions made for new teeth (nothing short of a miracle for someone who has Pick’s) but he was dead two weeks later. I watched him try to gum food in the nursing home where he died for about a week, and when they switched him to a puree diet he quit eating altogether and died. This piece is reprinted here with permission from Caregiver Relief. Special thanks to Diane Carbo.

By David Heitz

We learn at a young age about sock-eating dryers, one of the greatest mysteries of life.

But there’s another Bermuda Triangle out there that caregivers for loved ones with dementia eventually come to know: Nursing homes and assisted living facilities.

Things disappear daily at these places, and while many are quick to blame the employees for theft, that usually is not the case.

With confused residents wandering from room to room, anything is possible. We have to do our parts to make it easier to track down missing items, and I’ll get to that in a minute.

But I’m not going to be an apologist for these places when dentures get lost over, and over, and over again. This, unfortunately, has been the case with my dad.

Dad’s brand new set of uppers were permanently lost six months after he went into a memory care facility in July 2013. They had been lost about half a dozen times prior to that too, but I always found them, sometimes spending an hour or longer in his room conducting my own personal shakedown.

To avoid conflict with my bottom-line, bottom-dollar brother, I ended up bringing dad’s old set of false teeth to the facility more than a year ago, and dad began using those. But that was a bad idea. Dad got new teeth for a reason – the old ones didn’t fit correctly.

Long story short, about a week after dad’s facility trespassed me (you can read all about that here) a CNA tipped me off that the teeth had gone missing again. Time and again, the many workers who kept me in the loop while I was locked out explained that dad’s teeth appeared to be gone for good. And with me gone, there was no around to do a shakedown and look for them.

Finding this wholly inacceptable, I complained to the local elder ombudsman as well as the state about the missing teeth (among other things) back in June. I’ve yet to receive a response from either.

Cutting to the chase, when I was reunited with dad last week after 108 days, he still did not have any teeth. My brother (the POA) and I are unable to have civil communications, but the last text I got from him was that he was “fighting” with the memory care facility about dad’s missing teeth, dad’s missing hearing aids, and two weeks rent ($2,050) they don’t want to refund for the second half of the month of August. He said the director of the facility said not to lose hope, the hearing aids sill may be found.

Hope isn’t going to have anything to do with it

Hope isn’t going to have anything to with it.

Dad’s original set of teeth that were lost the first time should have been on the inventory list upon admission. My brother can, today, call the dentist and have replacement teeth made.

It’s not OK to put dad’s old set, possibly seven years old or older, back into his mouth. And the facility will need to cut a check for dad’s replacement set immediately, as they have insurance for that very purpose. They’re not going to offer you this information readily when this happens to your loved one, but it is fact.

My dad has John Deere insurance and ample funds for a replacement set. So in theory, the new set should be ordered today, and without delay. When I met the social worker the other day at dad’s new facility, one of the first questions she asked was, “Where are his teeth?” It gave me immediate peace of mind to see they are on top of such things and will be monitoring his care like a hawk.

But dad’s teeth problems don’t end there. When he was found in a pool of blood on the lower level of the memory care facility on April 15 of this year, and landed in the emergency room, he suffered a chipped tooth. My dad winces and complains about his mouth incessantly, and has done so since that day. To think he has continued to suffer since April 15 to me is incomprehensible and 100 percent without excuse. In the five days we have been reunited, some of the few words he has spoken have been “I need the dentist,” “my mouth hurts” and “I need a wrench for my mouth.”

It makes me so incredibly upset. Again, dad has John Deere dental insurance and ample funds. He should be able to have a dentist look at his teeth even if we need to pay a dentist to come to the new nursing home. I have no idea whether that is even possible, however.

Most elderly in facilities broke and without dental coverage

But the reality of the situation for most people in nursing homes is this: They don’t have either dental insurance or ample funds. So what are these people to do?

It’s a huge problem. The millions of Americans on Medicare don’t have dental coverage. There are programs in place here and there, and you can click right here to go to the U.S. Department of Health and Human Services Administration on Aging website’s dental page. It lists multiple resources on how to get your loved one dental care.

Good dental care is more than a luxury. To quote from the site, “According to the Centers for Disease Control and Prevention, one-fourth of persons age 65 and older have no remaining teeth. Nearly one-third of older adults have untreated tooth decay. Severe gum disease is associated with chronic disease and severe health conditions including diabetes, heart disease, stroke and respiratory disease.”

I can tell you right now that my dad is embarrassed that he has no teeth, especially as he is trying to make friends in the new nursing home. “Whether caring for natural teeth or dentures, daily oral hygiene can mean older adults will be free of oral pain, can maintain a well-balanced diet, and will enjoy interpersonal relationships and a positive self-image,” the AOA site states.

The poor guy has been sitting in the dining room by himself, which is why I’ve gone up there and had at least one meal with him every day. When I’m not there, an employee has been sitting with him. When old ladies wheel past, my dad lifts his hand and feebly says, “Hi.” Can you imagine what this is like for him? It’s got to be like the first day of high school freshman year in the lunchroom. Not having his teeth is a blow to this little Casanova.

What you can do to help, and when all else fails…

One member of one of my online caregiver support groups offered this very good advice for avoiding the nightmare of lost teeth:

I recommend making sure dentures and hearing aids have names on them. Best place for hearing aids at night are locked in the nursing cart in a labelled container. Dentures should have a labeled container as well.

If your facility does not have a set protocol for managing these items – ask them to create one so that everyone follows the same steps.

Make sure when you bring items in that they are added to your loved one’s personal belongings list. Make sure their name is on everything, even if you are doing the laundry. If you are doing the laundry make sure there is a neat visible sign saying so, either laminated or in plastic. Keep the belonging list updated. Take photos of clothing – it especially helps when trying to locate items.

If dentures repeatedly get lost, and you don’t have the resources to replace them, and the facility is pushing back…raise hell. Period.

“Find out who the local ombudsman reports to and file a written complaint as well as file a written grievance with the state,” suggested one caregiver in my support group. “They need to be aware of this kinds of negligence. Be sure to give a copy of your written complaints to the facility as neglect of patients can cause them to lose their license.”

Adds another member, “Keep repeating your complaints with written copies to everyone. Find out if other families at the same facility also have complaints also and form a group. Bring all the complaints to the administrator. If you continue to get no response, take your evidence to the local news media.”

I don’t mean to incite. But this journey has been an unbelievable nightmare. Negligence in elder care is everywhere you look (and yes, so is quality care, and I have written about that and will continue to do so when I see it). My stories would not be going clickety-click-click if there wasn’t a whole world out there experiencing the same problems as myself. Advocating for a loved one does not make you a troublemaker. Don’t let anyone tell you different.

What Does it Mean When a Person With Dementia Goes on Hospice?

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This piece originally was published Aug. 16, 2015, for CaregiverRelief.com. Reprinted here with permission.  Special thanks to Diane Carbo, purveyor of Caregiver Relief. My dad eventually was taken off hospice after being on it for two years and then died less than two months later, Sept. 27, 2015.

By David Heitz

I want to preface this column by saying that hospice programs are a blessing for people with dementia in numerous ways. My intention in writing this piece is to educate those of us with loved ones battling dementia-related illnesses so that we can get the most out of hospice programs.

But I’m going to start with a hospice horror story.

It didn’t take long after my dad entered a memory care/assisted living facility in July 2013 before the executive director informed us that he had become more than they could handle. With dad’s frontotemporal dementia diagnosis, his outrageous behaviors, angry outbursts, and refusal to allow certain people to bathe him, he had become too much.

She advised he probably would be better served in a nursing home. My brother and I, who don’t get along about anything as it pertains to our dad’s care, were devastated. My brother hated the thought of spending an extra $2,000 per month on a nursing home. I hated the idea of moving dad from an architecturally stunning facility to a hospital-like setting.

We found a solution in hospice care. By getting dad approved for hospice, that meant that hospice workers came to dad’s assisted living facility a few times per week and gave the staff extra help in caring for him. The tab for hospice, which was about $8,000 per month, was picked up by Medicare.

But in May 2014, I got a call from the facility saying dad had slouched down in his chair at lunch and had become unresponsive for a while. I was suspicious, as my brother had just taken dad to the doctor a day prior. I had asked my brother what had happened at the doctor visit, and my brother replied, “He doped him up some more.”

When the wellness director called, I asked her, “Could this be result of some of the new medications dad’s doctor had put him on?” She responded that, in fact, the doctor had discontinued all medications due to dad being on hospice.

I admittedly went into a rage. “Insulin too?” I asked. The answer was, yes, insulin, too.

Hospice Horror Story Sends Me Into Rage I Never Felt Before

When dad went on hospice, I knew enough as a health reporter to ask what would happen with dad’s insulin under the program. Dad was by no means dying. He ate five meals per day, which included three breakfasts that he would eat because he would forget that he already had eaten and demand to be fed again (the facility served breakfasts in three shifts). Taking him off insulin would be inhumane, as he regularly had blood sugar readings spike into the 400s.

The hospice nurse replied that Medicare only pays for medications related to the terminal diagnosis, and that likely would not include dad’s insulin. (Editor’s note: This absolutely is not true as it pertains to insulin, I since have been informed by a well-known national law firm that advertises on television every 30 minutes). I advised her, in the presence of my brother and my dad, that as a John Deere retiree dad has excellent health insurance in addition to Medicare, so that would not be an issue. The John Deere insurance would pay for the insulin.

I apparently thought I had warded off my greatest fear – that someone would attempt to revoke dad’s insulin when he was still active, eating, talking, and quite frankly having nice visits with me every single day. Why did I suspect this could be a possibility? I won’t go into that. I can tell you that the doctor’s nurse, Carol, said, “The doctor must follow the POA’s wishes.”

I raised holy hell with my brother, the doctor, and let out a drunken scream heard round the world on social media. Dad was back on insulin the next day. I quit drinking after nearly dying myself that night (attempted murder is how I see it, although it was listed by police as “assault”) and remain sober 15 months later. (Editor’s note: I will be sober three years in May, despite ongoing harassment related to being dad’s caregiver, 15 months after he has been put into the ground; his estate is not resolved and has become an ugly court battle between myself, my brother, and a neighbor of 50 years. I have spent $5,000 thus far just to get what my dad left me in a simple share and share alike will. I pray it all comes to an end Jan. 11 at the next status hearing; all parties involved have suffered long enough. I share this because this is not at all uncommon when one sibling is the caregiver and the other is the POA/executor. Make sure your parents put everything in writing including a binding caregiving contract between you and your sibling(s)).

Let’s fast forward 16 months, to April 2015, when dad landed in the ER. He was found on the floor of his room in the facility in a pool of blood with deep gashes to his face. That is exactly what the nurse on duty at dad’s facility told me when I got the 5 a.m. call.

Medicare has refused to pay my dad’s hospital bill for that trip because dad was on hospice. The John Deere insurer did pay some.

After 18 months, even though dad has continued to decline, hospice abruptly was stopped two weeks ago. (Editor’s note: This was the first step taken by the state of Illinois in seeing to it that I was reunited with my father. My dad was what was known as a 2:1, meaning it took two people to handle him at all times. It is a violation of state law to live in assisted living/memory care if you are a 2:1 UNLESS you are on hospice. The reason I was apart from my dad is because I was allegedly trespassed from seeing him (that was yet another lie, no paperwork ever was filed) after reporting an intruder at the facility on June 6, 2015, and then being taken to the Rock Island County Jail, stripped naked, emotionally tortured…ON NO CHARGES AT ALL. I did not see my dad for 108 days; he died 21 days after our reunion. The town I live in is a disgrace and people will be held accountable for all of this if only by their maker – but me thinks the justice system is going to work and people are going to be held accountable in that way, too. I know I need to forgive but I am not there yet. Even in the throes of addiction, I never could have mustered the evil that resides in the people responsible for all of this, particularly those who wear business suits. The others, I at least have some pity for and therefore am at least beginning to feel some compassion toward them).

Don’t Be Pressured: Be a Picky Hospice Shopper

I am not my dad’s power of attorney, and my brother and I are generally unable to communicate civilly. I’m certain he does not understand the ins and outs of the hospice program, and when I’ve tried to explain it to him, he has no interest and makes a mockery of my health reporting background. He works in department store security. He once said, “I work in law enforcement!” to which I replied “And I’m a doctor” and that is about the only laugh we have shared together in five years.

Kurt Kazanowski is a hospice and home care expert as well as a global consultant to companies that provide hospice care. He’s an ardent proponent of hospice, and with good reason. I shared my story with him and asked how I could use it to better educate people who have loved ones with dementia and are considering putting their loved one on hospice care. My intention is by no means to scare people away from hospice care, but I also want them to know how to get the most out of it and avoid problems and misunderstandings.

The author of “The 7 Pillars of Growth for Home and Hospice Care” and author of “A Son’s Journey: Taking Care of Mom and Dad” had this to say.

First, you need to be picky and careful when selecting a hospice provider. He said it is irrelevant whether a hospice is for profit or non-profit. What is important is that family members interview at least three hospice providers and carefully select the right one for them.

Diane Carbo, purveyor of this site, also wants to remind everyone that hospice choices can be changed mid-stream.

Kazanowski said 10 to 12 percent of residents in long-term care facilities today meet CMS guidelines for hospice. But providers can make potentially subjective decisions as to what qualifies a patient and what doesn’t.

The stigma associated with the words “hospice” prevents many families from selecting the service. And with good reason. I burst into tears when the director of dad’s facility brought up hospice, because I did not fully understand myself what it meant. I assumed it meant he would be dead soon.

“Many people are not being identified as candidates for hospice, and there is a stigma,” Kazanowski said.

Eight Interview Questions for Hospice Providers

Here are eight questions he says you should ask potential hospice providers:

  1. What is your turnover rate? The national average is 15 percent for hospice companies.  If the company you are interviewing has a higher turnover rate you need to understand why.
  2. What is the average case load for a nurse?  The national average is 13 patients per nurse. This is a key question to ask.
  3. Are your physicians board certified in hospice and palliative care medicine?  Just like you won’t go to a family physician for open heart surgery (you want a board certified cardiovascular surgeon), you want a physician who is board certified in hospice and palliative care medicine on the hospice company team you select.
  4. Does the hospice have full time physicians? You want to know if the hospice you select has a full time medical director.
  5. Does the hospice offer all four levels of hospice care? There are four levels of hospice care:  routine, respite, continuous care and general inpatient.  Does the hospice you select offer all four levels of care?  Ask for details in how they offer these four levels of care.
  6. Does the hospice offer general inpatient hospice (GIP) care? The GIP level of care is the “ICU” of hospice care and is intended to care for patients who have break-through pain and symptom management issues.  You need to know and understand how the hospice you select delivers this level of care should your loved one ever need this specialty type of hospice care.
  7. Does the hospice offer music therapy? The basic hospice benefit does not require a hospice to offer music therapy.  If the hospice you select offers music therapy they are going above and beyond the basic hospice benefit.
  8. How many volunteers does the hospice have? The use of volunteers is part of the conditions of participation a licensed hospice must offer. Ask how many volunteers the hospice has and how many volunteer hours the hospice provides per month.

How Did These Things Happen to My Dad?

As for my dad’s case, Kazanowski said family members should ask a hospice provider what their philosophies are about a patient’s medications. Sometimes when a patient is taken off medications they actually do better, because it may turn out they were overmedicated.

A decision to take a patient off insulin, as in the case of my dad, should have been decided at a meeting held every two weeks between the physician, the hospice provider, a nurse, and a social worker. Family members are entitled to attend these meetings, Kazanowski stressed. Of course, the POA would need to approve who is able to attend.

As for dad’s emergency room bill, it’s true that Medicare generally will not pay in such situations. Kazanowski said one way of handling would have been to simply state in the ER a request to revoke hospice. Of course, that would have to be made by the POA. In that case, Medicare would have paid for my dad’s bill, and then dad could have gone back onto hospice later.

“I don’t advocate that that’s the best way to handle things,” Kazanowski added.

In his book, “A Son’s Journey,” Kazanowski devotes an entire chapter to hospice care, including the “10 Myths of Hospice” and “Demystifying Hospice.”

With dementia a global epidemic, and with so many people in the U.S. meeting the qualifications for hospice care, many still elect not to use it, Kazanowski said. In hospice surveys, nine out of 10 loved ones say they wish they would have chosen hospice sooner.

I can tell you this: Dad loved the extra attention that he had on hospice, and he has continued to decline since its removal two weeks ago.

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This adorable old guy is my dad. And I may never see him again. Today I tell you why.

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Editor’s note: This piece originally was published July 14, 2015, on Healthline Contributors, which no longer is live. Reprinted here with permission from Healthline (many thanks to Healthline). The incident reported here came around the one-year anniversary of an attempted homicide (that’s my definition, it still was being investigated by police as an assault last I knew) that I survived the last time I ever took a drink. It left me with a PTSD diagnosis regardless, and such behavior as what is described here is not uncommon for people with PTSD around the time of anniversary dates because they serve as triggers.

 The facility never filed formal paperwork to trespass me despite what I originally reported (they simply had a high-powered Chicago lawyer send me two threatening letters saying they had), but I was told by a judge to “keep my distance” anyway. And I trusted her. I appeared before the judge because the wellness director of the facility filed a no-contact order against me (facilities routinely take such measures when they have a demanding advocate for a resident…I heard from people not only from around the U.S., but around the world when I wrote this). The no-contact order was dismissed and I represented myself (pro se).

 I’ve been told by several attorneys that I have a solid case against this facility, but I’m not sure I have the energy left to fight. I’m glad I have attorneys willing to take the case, as it is affirming regardless.

 I’m still fighting my brother just to get the inheritance dad left me in a simple “share and share alike” will for which there should be no confusion. What a never-ending nightmare that has cost me $5,000 in attorney fees thus far! To think it continues even 15 months after dad has been laid to rest. But I’m glad he’s resting, and I’m glad I have maintained my sobriety, I am grateful for a great career and for my self-respect back.

Still, Never. Forget. What happened on this day. I never reported it at the time, but this is what led to my being taken to the Rock Island County Jail, held on no charges at all, stripped naked and emotionally tortured for two days. To think that Strategic Behavioral Health recently was denied a license for a psychiatric hospital in the Quad-Cities! What happened to me is not at all unusual. Even the Scott County Sheriff testified on behalf of Strategic Behavioral Health for the need for this facility. The Rock Island County Sheriff, meanwhile, is married to Congresswoman Cheri Bustos, former executive for UnityPoint Trinity/Robert Young, which opposed the construction of the Strategic Behavioral Health facility along with Ken Croken on behalf of Genesis Medical Center, Davenport. Genesis and UnityPoint monopolize the market for psychiatric beds in the Quad-Cities.

 This piece had almost 18,000 page views on Healthline Contributors as of last month. Thank you for allowing me to share my story.

By David Heitz

This adorable old guy is my dad. And I may never see him again.

That’s because his assisted-living facility criminally trespassed me a little more than two months ago. This occurred after I reported an intruder while I was there – someone who I recognized as a “bad guy” from my past, whether right or wrong. When they laughed at me and discredited me when I made the report, I started yelling and giving them a piece of my mind, as I admittedly had done before.

I’m very protective of my dad. And they know that, because I would show up at the facility once, twice, sometimes three times a day, at all hours, to make sure he was being properly cared for. That’s the only way to know for sure whether a loved one in a facility is getting the care they are paying outrageous sums for. Any dedicated caregiver will tell you this is absolutely true.

I would walk in on the weekends and see residents sprawled out on the floor while the CNAs were downstairs, on their phones, fighting amongst themselves, or eating candy. On the weekends, it was an absolute free-for-all. Once, a resident and their loved one became locked in an apartment due to the door malfunctioning. Nobody answered when the emergency cord was pulled. Nobody answered the phone at the front desk. Nobody answered calls for help. That person removed their loved one from the facility, as have many others in recent months.

In the first threatening letter the facility’s Chicago law firm sent, they stated I had premeditated an attack of some sort, calling the police and the front desk of the facility before arriving. A simple review of the 911 tape of my call to the police department will prove that I called because I thought my life was in danger. My life had been threatened a couple of days prior to this visit, and I had been on edge. I thought I saw other “bad guys” while walking to the facility from the bus stop, so I called both the police and the front desk of the facility to make sure I got in safely. There’s a perfectly good reason why I thought I was in danger – that also is easily verifiable – and I am not “crazy.”

I’m not the power of attorney. As the guy not writing the checks from my dad’s account, I have been laughed at, discredited and disrespected ever since my dad’s facility was sold to one of the largest assisted-living chains in America. A handful of the CNAs, particularly those working on the weekends, have been anything but professional. They get by with … anything they want. And they know it.

From day one, when the new executive director was put into place, she painted me as mentally ill. Her latest slander against me came after I sent the local elder ombudsman to dad’s facility to check on his welfare since I have been unable to see him since May 4. A month prior, dad had landed in the emergency room, a deep gash to his face. Dad reported to the doc, the hospice social worker and myself that an employee at the facility had struck him. My dad repeatedly has alleged that one employee in particular, who struts around the place threatening other employees and disrespecting residents and their loved ones, has hurt him repeatedly. I have seen this employee be rough with other residents and be insubordinate to her superiors. When I report it, I am laughed at and discredited by the executive director, who is almost never there.

So, as I was covering the White House Conference on Aging yesterday, I received a second threatening letter from the Chicago law firm of the facility. It states: “(Facility) is advising you that it will not allow anyone sent by you or on your behalf to enter upon the premises of (facility) at any time. All visitors are being screened for this purpose, in order to maintain the safety and well-being of residents, visitors and staff. If someone comes on your behalf or at your request to (facility) that person or those persons will not be permitted entrance. In addition, no mail, packages, or other items sent to (facility) by you, on your behalf or at your request, will be accepted.”

This is called isolation. They have removed his advocate and are isolating him. Classic, classic elder abuse. I am one of the most gentle guys you could ever meet. I am 14 moths sober. I have God in my life. Everyone who knows me knows this.

Why do I write this? Because this sort of thing is being replicated coast to coast. I’m not one to roll over.

Elder care in America is a disgrace. When I met Joan Lunden last year after I interviewed her for this Healthline news story, I vowed to be an advocate for elderly people. I meant it.

Saturdays with dad – still making memories

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This article originally was published Feb. 3, 2015, on Healthline Contributors, which no longer is live. Reprinted here with permission. My dad died less than seven months after this was written.

By David Heitz

When dad first entered the memory care facility two years ago come July, I remember having a conversation with the director that always has stuck with me.

She explained then that when a parent has a progressive illness with dementia, we lose them twice. We lose them when they’re no longer able to communicate, and then of course we lose them when they die.

I knew she was speaking truth when she told me this, but I sort of shrugged it off as “after-school special talk.” That’s my term for the things people tell you about losing a loved one with dementia that, yeah, you’ve heard it all before, you hope it doesn’t apply in your case, and sometimes it’s just best to mind your own business.

But some things, like that piece of advice she gave me, are worth listening to. Other words of wisdom that have proven true? “Join a support group, you’ll feel better” and “you really need to remember to take care of yourself.”

Even though I’ve really been down in the dumps as it relates to the progression of dad’s illness, I wanted to write a column today talking about good memories with dad. I’m hoping it makes me feel better, because I really do feel like I’ve already lost dad that first time, as the director of dad’s facility predicted. Writing this column each month helps me come to terms with it all, and for that I am so grateful.

Dad still talks now and then, but very little, and nothing makes any sense at all. Soon I know even these few sentences per visit will become cherished memories.

Here’s another important piece of advice: When a loved one goes into a facility, there’s no reason at all to stop making memories.

Just last week, dad pointed to a row of wheelchairs next to the television in the great room of his facility and said, “Take a picture of all those hot rods lined up over there.” That one went over pretty well on Facebook.

Having Fun While Making Fun of Milan

So last night I began thinking about dad and special moments with him that stick out. They always were on Saturdays. I think every Saturday until the end of my days I’ll think about my dad.

When I was very young, we would go on Saturday mornings to visit one of his two best friends, Jack Long or Dave Guldenzopf. They both lived in the nearby village of Milan, and going to Milan always excited me for whatever reason.

Even though Milan borders my town of Rock Island, Ill., it always seemed like another world to me. You have to cross two little bridges over the Rock River to get there from Rock Island. When you cross the bridge, there’s a power dam with a little waterfall off to your left. To a little kid it’s just the neatest thing ever to look at the waterfall when you’re crossing the Milan bridges.

Back in those days, when you entered the village of Milan the first thing you’d see was a Western store with a large, spinning horse atop its sign. There were lots of seedy looking bars downtown, too. Honestly, to me it looked like the set of a Western at Universal Studios Hollywood.

Dad liked to make fun of Milan. It’s terrible, but I have good memories of hearing dad’s Milan jokes. Even until recently, we would giggle when he would talk about Milan.

(Disclaimer: Milan has since grown up and boasts some of the most beautiful residential neighborhoods in our region: a stunning city hall, robust economic growth and lots of other wonderful things! So my apologies to Milan!)

Dad always was in a good mood when we would visit his friends in Milan. It seemed like a reprieve from work and married life for him, at least for a morning or an afternoon.

Honestly, he seemed like a different person during those Saturday trips to Milan, and looking back I can only imagine home life was as miserable for him as it was for the rest of us. Other than that, dad seldom went anywhere. Keep in mind he received disability retirement at 43, so he led a pretty boring life.

Sadly, Jack and Dave both passed quite a long time ago. Dad hasn’t been able to visit either of them for many years.

Prior to taking me with him to see Jack or Dave on a Saturday, I know he used to spend Saturdays visiting his dad. I don’t remember my Grandpa Raymond T. Heitz the first (now there are four, maybe five, who knows) because I was only 3 when he died.

But my dad, who like so many people with dementia like to tell you the same thing 10 million times over, spoke many times through the years about enjoying his Saturday visits with his dad. Those were special memories for him.

Free Lunches at Coney Island and Mr. Quick’s

Saturdays weren’t just about seeing Jack or Dave. Usually it meant a free lunch, too.

My dad was a penny-pincher, and seldom did we eat out unless my mother insisted on it (and who am I kidding? she did insist on it quite a bit). So when on a Saturday we would go to Mr. Quick’s or Harold’s Coney Island, it was a huge treat.

I remember two things about Mr. Quick’s and Harold’s Coney Island. Mr. Quick’s had a tile mosaic counter that I thought was just so, so cool. And Harold’s Coney Island? I remember Harold, the little old guy who ran the place (not super old, but older than my dad at the time). He was very quiet and very regular guy-ish. No matter what anyone at the counter would say, he’d just sort of smile and nod, then go back to cooking the hot dogs. The guy really never said much, but I thought he was famous. His name was on the sign outside Coney Island, after all!

And sometimes around here when people talk, smiling and nodding is simply a good idea. He was a smart man.

Fast-forward to before dad moved into the facility. I had the pleasure of making memories with him for one year in this house, the house he and my mother bought together in 1963 (and now I own the house). She had him evicted from the home in 1984 (Order of Protection) prior to divorcing him the second time. I moved out shortly thereafter, moving in with a cousin and paying room and board as a high school senior on my part-time newspaper salary.

When mom died in 1995, neither dad nor I had an interest in buying the house. My older brother already had his own house by then. So we sold it.

And in what undoubtedly has been labeled a dementia twist by some, dad found out it was for sale in 2012 and bought it again.  The year we spent together here was special beyond words.

 Facility Tales: The Good, the Bad, and the Ugly

Back to when the time comes for a nursing home or assisted living. The best advice I can give anyone is to NOT stop making memories once they go in there. It only will make life unpleasant for both of you.

For starters, let me just tell you surprise visits are a necessary part of being your loved one’s advocate. You need to know what’s going on, and sometimes you may not always be thrilled with what you see. But it can’t be addressed if you don’t know it’s happening.

But far more importantly, you only are cheating yourself by staying away from a loved one when things begin to become uncomfortable. Going along with the strange things they say and maintaining as much of a sense of normalcy as possible, I think, is key to getting through this – for both the loved one and the patient.

If you’ve got a sense of humor, facilities are just plain fun at times. I wrote a little bit about that in my first column about dad, “My Dad: Class Clown of His Memory Care Community.”

Believe me, I could write a book: “Facility Tales – The Good, the Bad, and the Ugly.” And I still might. But for the most part, the controlled environment of assisted living allows for some tender moments during the sunset of life that I do not believe otherwise would be possible due to the stress of caregiving.

So when they go into the memory care facility, keep making memories. That’s the whole point.

Why caregivers for people with dementia often die before the patient themselves

 

dementia

This piece originally was published July 11, 2015, on Healthline Contributors. That site no longer is live, and the article is reprinted with permission here.

By David Heitz

Half of all family members who care for people with dementia die before the patient does, statistics show, or they become seriously ill due to self-neglect. The study was published in 1999 in the Journal of the American Medical Association.

Why? Because caring for someone with dementia is hard work. Due to their illness, people with dementia can be almost impossible to communicate with without the proper training. They need to be watched constantly, like children. And they can become violent.

It’s why so many places that call themselves “memory care” assisted-living communities handle the situation by encouraging family members to ask doctors to heavily sedate the patient. That can be cruel, but sometimes it is necessary in places that are not properly staffed.

Diane Carbo wants to know why developing guidelines for true, standardized dementia care— and financial and respite support for family members who try to care for people with dementia in their homes — isn’t on the agenda for the White House Conference on Aging Monday.

“This is the conference where big public policy changes occur. This is the conference that Social Security and Medicare came out of,” Carbo said. “Paying the family caregiver some kind of stipend to provide care, or at least respite care … we have no funding for respite care in this country at all. The family caregiver is the invisible patient. They are so busy monitoring someone else for 24 hours that they neglect themselves.”

Carbo is a registered nurse with four decades of experience and the founder of Caregiver Relief. She is also the founder of My Vital Alert. My Vital Alert stores all kinds of vital records — medical, dental, even power of attorney and will information — on a pendant, bracelet or card. A provider can tap any of those items with his smartphone and have a patient’s vital information pop right up.

Many families choose to put their loved ones in assisted-living facilities that label themselves “memory care.” What that usually means is locked doors. Period. At best, it means the staff attended a two-week seminar on caring for people with dementia.

There are some true “memory care” communities, but they are few and far between.

“If it’s truly a dementia care unit, the staff would have training that would allow them to handle behaviors,” Carbo said. “You also need behavioral specialists and neuropsychiatrists on staff.”

Instead, they sedate the patient so they won’t become a problem. The patient essentially becomes mentally vegetative.

“There needs to be a totally different approach to handling dementia,” Carbo said. “There are no regulations, no standardized dementia care.”

The plus-90 group is the largest growing demographic by age in the U.S. As that group grows, so do the number of people in the U.S. with dementia.

“Everybody is so worried about a cure … I know that we want a cure, I get that,” Carbo said. “But the issues that are more serious are the caregivers, the lack of continuity of care, and caregiver support.”

Social isolation is the classic hallmark of a family caregiver. “I tell my caregivers, you are the most single important part of the equation. Without you, it all falls apart.”

She said caregivers need respect as well as financial support in some form or another for providing care.

“At the end of life, when this is all over, most (caregivers) end up financially devastated,” Carbo said. “They have lost their job, they were negatively impacted financially as a defenseless individual.”

Caregivers provide billions of dollars in free care every year, as I reported two years ago in this Healthline news story.

“So many of them become ill or die,” Carbo said. “Those are the issues that I see we are not addressing.”

(Photo Courtesy Diane Carbo)

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PBS Special: No Help Caring For Your Elderly Parents Until They’re Broke

broke-parents

This piece originally was published April 26, 2015, on Healthline Contributors. That site no longer is live. Reprinted here with permission.

By David Heitz

Think your elderly parent won’t end up going completely broke before they die? Think again. It’s the reality facing a growing number of American families.

Maybe people finally will listen when Meryl Streep narrates “Caring for Mom & Dad” (#CaringForMomAndDad) airing May 7 on PBS. I just finished screening the documentary. Before sitting down to write this, I wiped away some tears – indeed, tears of affirmation – and took a long walk to work off some suppressed anger. Writing about these things never is easy.

You know what appears to be even harder? Hearing the blunt truth from someone like myself who is going (and hopefully growing) through it.

It’s really quite simple. Modern science has made it possible for people to live longer than ever before. While doctors can seemingly work miracles these days to keep a person’s body going, there isn’t much they can do for the mind when it starts to go.

And nobody is going to help you or your parent financially when your parent becomes unable to care for himself until he is broke. As in zero dollars. There is no help until the point your parent becomes penniless and qualifies for Medicaid.

Heaven forbid you find yourself in a situation where you’re not sure how to go about caring for your parent, but if it happens, I suggest not sharing too much on social media. People will give you advice that they pull right out of their behinds. Everyone’s an expert, and most people have no idea at all what they’re talking about. There are scams galore. There is no easy fix to this. You or your parent either pay for your parent’s care until they are totally broke, or you do it yourself along with the generous help of others. And good luck with that.

This is why you need to watch “Caring for Mom & Dad” May 7 on PBS. Check your local listings. If this trailer doesn’t grab your attention, nothing will – until you get that first bill from mom or dad’s facility. There also are wonderful tips and resources on the “Caring for Mom & Dad” site.

My Caregiving Story And the Path I Chose

I moved back to Illinois from Southern California in 2002. My brother already had placed my father (then 63) in a facility. Since I returned ravaged by crystal meth, it was easy to talk about what a mess David was and how the real reason he came home was to get help. From day one nobody really believed I came back to help my dad as well as myself. And that’s fine. At this point the proof is in the pudding.

When I came home, my brother took dad out of the facility and I assumed the caregiving role. Dad paid me $12 per day and also paid my $400 per month rent for many years. In exchange, I checked on him a few times a day and ran occasional errands. The role escalated through the years to me eventually being a live-in caregiver for one year.

I immediately was hired by a local newspaper when I moved back. It didn’t work out. It ended with a separation agreement. I cried at work a lot and they didn’t like it I guess.

I was unemployed for a couple of years, and during that time I spent quite a bit of time with my dad. I really grew to love the man I once despised. Dad seemed to improve after my first job ended and I began to spend more time with him. But my first go-round at freelancing wasn’t as lucrative as it is now, and after a few years, I yearned to go back to work.

So I went to work for another local newspaper a couple of years later. It was OK for maybe two or three years. But as my attention turned from dad, he got worse. He would call work confused. I would go to his apartment on my lunch hour and he wouldn’t make a whole lot of sense. I would go back to work really stressed out most days. I’d bolt to the tavern from work every day at 4 p.m. when the tavern opened.

To make a long story short, work got tired of hearing about how stressed out I was caring for dad. I got tired of what I felt was a lack of understanding on their part. Substance abuse problem and all, I quit in November 2011. (I am one year sober in two weeks.)

 Reality Check: Caring for Dad Means No Career for You

“Caring for Mom & Dad” offers a glimpse into the lives of people like myself. People who tried to care for their parent so they could live independently as long as possible. Nobody wants to put their parent into a facility. The $4,000 to $8,000 per month is no fun for anyone either.

In the documentary, journalist Jane Gross explains how she and her brother pondered how mom had blown through $500,000 – her entire life savings – in four years. They didn’t even know their mom had $500,000 to spend. They joked she must have robbed a bank and they never knew about it.

The documentary also tells the story of two siblings who fought tooth and nail before finally seeking help. The sibling that controlled mom’s money would tell the one doing the hands-on caregiving (and by no means am I minimizing the role of managing finances) that she didn’t need any of her mom’s money for her own bills. He felt she needed to care for her mom out of a sense of duty.

But that sibling, like myself, wondered how she could support herself. What if this goes on forever? Will she not work during the prime of her career, during her prime earning years?

Many do make that sacrifice. I chose not to. Not only because I want a life, a future and to rebuild my career, but because I am not qualified to care for my dad. I don’t believe that any one person outside of a controlled facility would be in my dad’s case. It takes more than one person. You can learn about my dad’s frontotemporal dementia by clicking here.

Ignore the Misinformation on Social Media from Non-Experts

You will hear over and over, “You can get paid from the government to care for your parent!” Yes, if they are penniless and qualify for Medicaid. So don’t even listen to those people or any of the other bad advice that is out there, unless indeed your parent is totally broke. Most of our parents aren’t totally broke going into this. Don’t try to explain it to people who think they know everything. The know-it-alls have a rude awakening coming.

And don’t expect corporate America to be understanding while you care for mom or dad. Target is one exception. You can find out more about that in the movie.

While many managers in corporate America post delightful notes such as: “So and so is home caring for sick baby … we wish her all the best!” on online office schedules when staffers call in for that reason (although I realize it’s even rare these days that employees get cut a break for that), when you tell them you were late because you had to clean up dad’s poo?

“David, we need you here,” I was repeatedly told by both employers with a stern frown, even after lots and lots of “family first” lip service. That doesn’t last long and it’s not real.

There are ways this can be fixed. For example, in one southern Ohio county, voters approved a tax levy that funds services for the elderly so they can stay in their homes a little longer. But I’m skeptical. In my Illinois county, voters won’t even approve levies so that children can learn in modern schools. If they don’t care about their kids, I don’t think they’re going to care about the elderly.

Wake up, folks. You can watch this documentary or not. Meryl and I have both warned you of what’s coming.

Check out David Heitz’s news stories about caregiving such as “Caregivers are the New Working Moms,” “Millions of Caregivers Offer Billions in Support” and more at Healthline News.