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.”

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

 

A prayer that my Scottish neighbor goes out singing like her friends back home

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Editor’s note: This piece originally was written last year for Caregiver Relief. Special thanks to Diane Carbo. My neighbor died just days after this was written, presumably alone. Her nieces, who lived out of town, came to the funeral, a memorial service which was held several weeks later. The state seized her belongings to pay her bill at the county-owned nursing home, where her son, her caregiver and a veteran, had died just weeks before. Due to the dysfunction in the state of Illinois, her house (which she rented) still is not ready to rent again because of multiple delays in the state’s seizure and auctioning of her property.

By David Heitz

It’s politically correct in America to gush about how wonderful our country’s hospice programs are, and many of them are quite good.

But in Scotland, there’s a hospice that will totally change the way you think about caring for the dying. At Strathcarron, patients not only stay in their homes for as long as possible, but once a week they attend “day hospice” and truly celebrate life – even singing regularly (and with gusto, I may add) with other hospice patients and hospice staff.

Between belting out tunes that relay the stories of their lives and having their pain monitored, they also make good friends with others who are struggling with the reality that the end could be near.

The hospice hit U.S. shores last year in a documentary titled “Seven Songs for a Long Life” that debuted at the South by Southwest (SXSW) film festival in Austin, Texas.

You can learn more about the film and watch a trailer by clicking here.

The cast of characters is delightful – an elderly gentleman full of spunk who refuses to admit he is dying (he even refuses to sign a form crediting him an extra 100 pounds a week because he only has six months to live); a motorcyclist who had to leave the speedway when his MS became too crippling, but at the hospice learns to manage his pain; the mother of a 4-year-old daughter, who has a story that will break your heart but also inspire you with her courage and words of wisdom in the face of death; and Mandy, who is nothing less than the hospice nurse we want all of our loved ones to have in their final days.

The film’s cinematography is especially meaningful. It captures the beauty of the hospice, its people, and the Scottish countryside itself. My former next door neighbor is Scottish and spoke fondly of her homeland. Sadly, she recently became a ward of the state and was removed from her house and placed in a nursing home, just days after her son who cared for her died. Her son, a veteran, faced a long delay in seeing a doctor at the VA in Iowa City and eventually succumbed to cancer.

‘These patients are hungry for life’

As I watched the film, I thought about how wonderful it would be if my neighbor could be back in her homeland getting TLC at a place as wonderful as Strathcarron. Life sure doesn’t seem fair sometimes.

Amy Hardie, director of the film, told me there is no “day care” hospice model in the U.S.  The hospital in Scotland is funded in part by the U.K. National Health Service but still needs to fundraise a significant amount of money each year to stay open. It’s not easy in a working class area.

But the development director, a key cast member named Jim Brown, manages to pull it off by raising the needed 3.9 million pounds every year.

“It means that patients can stay at home, but know that each week they are coming in for a day where they will have expert medical attention by people they have got to know over months and often years,” Hardie told me in an email interview. “It is also a day where they meet with the same other patients who have a terminal illness, who are confronting their own mortality, but are often able to be kept pain free and mobile.

“These patients are hungry for life – they may know they are going to die of their disease, but there is life to be lived right up to the end, and hospice care is about helping them to make that life as fulfilling as possible – hence my role as film-maker in residence. No-one wants to be defined as a patient – singing was a potent way for the patients to show that they were more than patients. A song holds so much – the past, in the memories of when and where you sang the song, what the lyrics meant to you then – and also the present, when you sing, now, to the audience, connecting through the words of the song, an expression that goes beyond words; and somehow also the future, a promise of a future and a future when the song will remain, with you singing it, on the film, even if you are no longer here. It was the patient’s idea to sing, and they chose the songs. I was bowled over by the power and urgency of their singing. Each song shows how very alive they are, right up to the moment of death.”

Not all hospices are created equal

We hear so much these days about hospice not being what it used to be, no longer that sad, end of the road where patients are prepared for their inevitable deaths and given time to let that all sink in while being pumped full of morphine.

Today, people with various illnesses sometimes go on and off hospice several times. While they’re on it, they get music therapy, massages, spiritual support and other pampering. Their family is given support too.

But not all hospice providers are created equal, as I wrote last year in this piece for Caregiver Relief.

When my dad went on hospice the first time, he was nowhere near death. He was placed on hospice so that he could legally stay in his assisted living facility as opposed to being moved to a nursing home. He had become what is known as a “two to one” – meaning it took two employees at any one time to deal with him. He displayed outrageous behaviors due to his disease, behavioral-variant frontotemporal degeneration, or Pick’s, which you can learn more about clicking here. So having hospice workers come to the assisted living facility gave them extra help in caring for my dad.

Illinois law requires patients deemed “two to ones” be placed in nursing homes, and that is where my dad should have gone much earlier on in his illness. But hindsight is 20/20.

Just before filing this story, I called the nursing home where my Scottish neighbor was taken a few months back to check on her. “Sir, she is actively dying,” a terse nurse explained, quick to cut me off from speaking.

I became a little emotional and began to explain I was writing a piece about this film and that I had thought of Monica, since she is from Scotland. “Sir, I don’t mean to be rude, but…”

Yes, I know. You’re busy.

“Yes we are.”

Click.

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

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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

Aging gay people struggle to find support and community

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This piece originally was published June 28, 2015, on Healthline Contributors, which no longer is live. Reprinted here with permission.

By David Heitz

When we enter this world, we’re defenseless. We need someone to care for us to survive.

And when we’re in the sunset of our lives 70, 80, 90, or even 100 years later, we’re often in the same boat. This is truer today than it ever has been. Modern medicine is allowing us to live longer, but not necessarily better.

And another truth: Remember when you were little, how scary it was to be alone? Remember what it felt like when you suddenly were separated from your mom at Kmart? Elderly people often are frightened to be alone, too.

Many end up moving in with their children, as I reported in this feature I wrote for the Quad-City Times of Davenport, Iowa in 2009.

Many gay people find themselves especially vulnerable in their golden years. Most elderly gay people today don’t have children to care for them. That’s a reality that’s changing for future generations of elderly gays, but for now, it is what it is.

And just like many elderly people, gay people often find themselves old and without a spouse or a partner. Let’s face it – gay marriage only became the law of the land in this country in June 2015. And many elderly gay men in particular not only have lost their spouse or partner, but they did so many years ago, tens of thousands of them to AIDS.

And one more harsh truth faced by some older gay men: They’re living with HIV. It’s good news that they’re living and have made it into their golden years. But some were brought back from the brink just as new drugs hit the market. That means that some of them were unable to work and sock away money for retirement during their prime earning years. You can read more about that in this piece I wrote for Healthline News.

Sound depressing? That would be one way of looking at it. But that’s not the angle filmmaker PJ Raval takes in “Before you Know It,” a must-see film that you can learn how to purchase by clicking here. You can watch the trailer by clicking here.

I can only describe it as incredibly uplifting, albeit brutally honest.

PJ followed three elderly gay men for five years, from 2009 to 2013. There’s Robert, the crotchety owner owner of the oldest gay bar in Texas, in Galveston. He calls himself, “Robert the Mouth, the Ugliest Girl in the South.”

And Ty, a black man in Harlem who works for SAGE. Ty lives a pretty good life, but without an organization like SAGE looking out and offering support and community to elderly gays in Harlem, that likely would not be the case. You can learn more about SAGE and their work with elderly gay people in this piece that I wrote for Los Angeles Times Content Solutions.

Finally, we meet Dennis, or “Dee” as he calls himself when he goes out dressed as a woman. Like Ty, a Navy veteran, Dennis also served his country, in the Air Force. After military service, Dennis worked 30 years for the U.S. Fish and Wildlife Service. He was married to a woman during that time. When his wife died, he finally came out as gay, and later as a cross-dresser.

None of these men have it easy, especially not Dennis. But this remarkably uplifting film shows how they boldly moved past isolation, stigma, and hardship to squeeze every last drop out of life as they edge closer to going over the rainbow.

“When people watch this film what I’m hoping they take from it is that the aging process doesn’t discriminate,” Raval said. “It’s actually something that happens to all of us. And gay men are facing some of the most extreme examples of ageism, isolation, without a family structure, often single and with no children. They have to make their own communities and find their own communities.”

Cross-dresser finds peace at gay retirement complex

Dennis winds up finding community at a gay retirement complex in Portland, Oregon, called Rainbow Vista. At the age of 82, Dennis still lives there today, paying $745 per month for a one-bedroom apartment. The facility no longer offers meals – it’s essentially just a place to live, and for active seniors only.

But Dennis remains active, taking gay cruises and even going out for a cocktail now and again dressed up as Dee. It’s not something he ever would have done prior to moving out of his water-damaged trailer in Florida several years ago after finding Rainbow Vista on the Internet.

“I was married 30 years to a woman and kept everything under restraint,” Dennis told me Saturday while aboard a ship cruising through the Great Lakes and Erie Canal, ending in Warren, Rhode Island. “In Florida I never ‘dressed’ because of the community attitude. Dennis says rainbow vista is “no frills” but adds, “I love the companionship I’ve found there.”

Perhaps the most heartbreaking scene comes near the end of the film. As he takes a final pass through his trailer before leaving before Florida for good, he declares his family won’t mind that he’s gone. “I’ll be out of sight, out of mind. For years they just tolerated me.”

It’s a sentiment so many of us now all too well, even those of us who are not seniors yet. I asked Dennis how he got past such hurt, and got a response that warmed my heart.

“I have been reconciled with my family,” Dennis said. “I think that the pope’s comments helped.”

There’s a heart-warming scene, too. I hate to be a spoiler, but you won’t want to miss Dee riding aboard the “TG Girls” float in the Portland, Oregon Pride Parade.

Sucking Downs Suds and Cigs at the Gay Bar

Robert “The Mouth, Ugliest Girl in the South” not only finds community where so many gay people find it – a gay bar – but as the bar’s owner, he’s the one who provides that community.

In many communities, the gay bar still is the only town square for gay people. In conservative Galveston, Texas, Robert has provided that town square for many, many decades, but not without hardship.

While it may sound like a sad life on the surface, for some elderly gay men, sucking down cigarettes and suds at the local gay bar is the only community they’ve got.

Robert’s Galveston gay bar bears striking resemblance to a gay bar in my own community, as a matter of fact, at least in terms of the extremely direct banter.

In one scene, a drag queen who works for Robert begins to very frankly declare what those who judge elderly gay men who frequent gay bars – and “chase chickens” – can do with themselves.

She has a point. These men often don’t have anyone beyond the fellowship at the bar. I’ve been in that situation myself during lonely periods of my life. I’m sober now, but how quickly I forget the fellowship I received at the local gay bar when I needed it.

“I worry sometimes about this emerging view that the LGBT community is so widely accepted,” Raval said. “It’s actually not, and these seniors are examples of it. Not everyone is a 22-year-old living in the Castro District with a gym-ready body.”

A sad irony in all of this is that gay community itself is very much to blame for placing eternal youth ona pedestal.

We don’t stay young forever, and many gay people do end up alone. It’s often a parent’s biggest fear when their gay child comes out to them.

LGBT people need to prepare for their own trips over the rainbow

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Editor’s note: This piece originally was published in 2015 for the website Caregiver Relief, which no longer is live. Reprinted here with permission.

Gay people tend to spend much of their lives thinking they’ll never get old.

And then they do. Often alone, unfortunately.

“In the LGBT community we are very ageist,” said Nate Sweeney, executive director of the LGBT Center at Chase Brexton Health Care in Baltimore. “We don’t like to think about ourselves getting older, or getting sick.”

The reality is that many gay people find themselves alone, without blood relatives, children or a spouse when they enter their golden years. They often have no one to rely upon than other LGBT people, who often are not their partner or spouse, to care for them.

“If I get hit by a car, my husband can go into the hospital and tell them what my wishes are, and that’s a great piece of marriage equality,” said Sweeney, who is legally married. “But the vast majority of LGBT people are not married, have no children, and live alone.”

Even for those who do have partners, if they are not legally married and they don’t have advance directives in place, who will make end of life decisions?

LGBT older adults are part of a vast group of Baby Boomers called “elder orphans.” As many as 25 percent of Boomers are elder orphans, as CNN reported in May.

That’s why Chase Brexton just launched a new program called SAGECAP Baltimore. The program provides resources, education and support for informal, unpaid LGBT caregivers in the community.

“LGBT people for years have been caring for their families of choice,” Sweeney said. “Maybe they moved across the country, and they are isolated from blood relatives. Maybe they started caring for an ex from 15 years ago because they don’t want that crazy sister that’s five states away making medical decisions.”

There also is a SAGECAP program in New York City, but it is run out of a senior center, not a healthcare facility. SAGE is an acronym for the New York-based Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders.

According to SAGE, about 80 percent of long-term care in the United States is provided by family members. However, older LGBT adults often are estranged from their families. LGBT seniors are twice as likely to live alone and three times more likely to be without children.

One stop elder care, caregiver referrals

The Chase Brexton program is being funded with a three-year grant from the Harry and Jeannette Weinberg Foundation. What makes the program unique is that Chase Brexton is a federally funded, holistic healthcare center.

Services range from LGBT-centered caregiver support groups to full blown case management. “As you know, it’s very isolating being the caregiver,” Sweeney said. “So being able to reach them and find them is difficult. That why we’re partnering with other interested providers so they can make referrals to our services. We’re hoping we’re building something that can be replicated at other LGBT health centers.”

On the national level, SAGE has provided cultural sensitivity training to the Alzheimer’s Association of America. Conversely, the Alzheimer’s Association has provided caregiver support training to SAGE.

At Chase Brexton, caregivers can get support and referrals for themselves when they bring their loved ones for medical appointments. Services may include referring a stressed-out caregiver to a mental health therapist, for example.

Chase Brexton also will be able to advise LGBT people about the sorts of paperwork they need to have designating someone to make their healthcare and end of life decisions. It’s not something many LGBT people think about.

In the aptly-titled PBS document, “Before you Know it,” filmmaker P.J. Raval said, “When people watch this film, what I’m hoping they take away from it is that the aging process doesn’t discriminate. It’s actually something that happens to all of us, and gay men are having some of the most extreme examples of ageism, isolation, without a family structure, often single and with no children. They have to make their own communities and find their own communities.”

Elder care: An American healthcare crisis

Caring for the elderly has become a healthcare crisis in America, with 11,000 Baby Boomers turning 65 every single day. Many Baby Boomers already are caring for their own parents, not to mention that they’re getting older themselves

Among Baby Boomers who care for their parents, LGBT children are more likely to step up to the plate for that task as compared to their heterosexual siblings, Sweeney said. And it’s often because of the very thing that threatens their own livelihood when they get older – they’re alone.

“Our healthcare system for elders in this country needs a lot of work,” Sweeney said. “We don’t value the elderly in our society. All these systems have been brought up not to value or elders, nor the staff who works in these fields.”

In a story I wrote last year for Healthline News titled, “The People Caring for Your Parents Live in Poverty,” I reported on the extremely low pay that home health care workers receive for their important caregiving work.

For LGBT seniors who need skilled nursing care or who can afford an assisted living facility, they often find themselves being shooed back inside the closet. For seniors who blazed the trail for equal rights for gay men and lesbians, it adds insult to aging. I wrote about that last year in this story for Los Angeles Times Content Solutions.

SAGE is working nationally to change that reality. It has provided training to more than 3,000 elder workers in 27 states to help create more affirming environments in nursing and assisted living facilities. Training varies from online courses to in-depth, on-site training. The organization even provides facility audits.

“Reforming the entire aging services industry…it’s a huge undertaking,” Sweeney said. “There are 11,000 McDonald’s in the U.S. There are 16,000 nursing homes. That’s not something we think about a lot when it comes to making systemic changes. The corner we’re starting in is about the caregiver, and helping LGBT older adults prepare for their own futures.”

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.

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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.

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.

I never expected either to happen.

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.

It’s the mother of all triggers; but it’s my courthouse, too. Why I’m there today

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Update: Court went well today and even seemed a bit amicable. I am ready to move on with my life. I appreciate everyone’s prayers and support during the past several years. God bless all of you for following my work. I hope it helps people. It certainly has been cathartic for me.

For people with PTSD, we must avoid “triggers.”

Triggers are people, places or things that can take us back to the traumatic events, or series of events, that led to our post-traumatic stress to begin with.

It’s why combat soldiers with PTSD don’t much care for fireworks, for example. For people who have been sexually assaulted, it may be the home of their assailant, or a hotel where they were assaulted that serve as a trigger. Simply driving past can immediately “trigger” symptoms of anxiety, fear, and rage.

For me, the Rock Island County Courthouse, pictured here, is the “mother of all triggers.” And I have avoided it entirely for the past 20 months or so, but today I am there, defending my right to what my father has left me in his estate.

I always say that I have “Caregiver PTSD,” and indeed that may be the title of the book I hope to write this year. My PTSD came as the result of several things related to caring for and advocating for my father, including:

A horrifying assault in the basement of my home the last time I ever took a drink, three years ago, this coming Memorial Day weekend. The assault was brought on after I began to post on Facebook that certain people were “murderers” for taking my dad off insulin when he still was eating five meals per day. That not only is inhumane, but it’s an offense a doctor could in theory lose their license over.

I was alerted to dad being taken off his insulin – in fact, I was told that all his meds were DC’d — by the former wellness director of the memory care facility where he lived. This did not jive with what my brother had told me earlier in the day, that the doctor had “doped dad up some more” (prescribed more medications) at the office visit that day.

So, when the memory care facility called to report dad collapsed during lunch and could not immediately be revived, I was suspicious, asked questions, and got answers. Then I downed some booze, massive amounts of booze, and the “murderer” posts began. Not to mention a phone call made to the doctor’s office. Dad was back on insulin the next day.

Read more: When a person with dementia goes on hospice, it doesn’t always mean they’re dying

Someone who I had every reason to trust showed up at my door when I began making the “murderer” posts on Facebook. He then took me to the basement, where the assault took place. This all has been reported to police, is on the books, and there’s a paper trail (or at least there should be) of this entire story.

Read more: Raped in 2007 and assaulted in 2014, I finally put down the bottle

Next, on the one-year anniversary of the above-described assault, when, while visiting my dad at the memory care facility (which had changed ownership since the insulin incident, and now was managed by what I can only describe as a vile and heartless woman), I thought I saw a “bad guy.” I had gone to police just a couple of days prior regarding some “bad guys” when a friend of mine’s body was pulled from the Mississippi River. I was on edge to begin with and thought people were following me on my walk to the facility that day. I even dialed 911 and also called the facility for help on my way there.

It’s not uncommon for people to exhibit paranoia, anxiety and fear around the time of PTSD anniversary dates. Did I “imagine” this guy was a bad guy, when in fact he simply might have been a maintenance man (as he was dressed as such)? I still don’t know the answer to that, and I may never know.

What I do know is that when I reported this “intruder,” the staff laughed at me, discredited me, and I started giving them a very loud piece of my mind. The next thing I knew, I was being stripped naked and thrown into a cell at the Rock Island County jail, a straightjacket thrown in behind me. The jail, staffed by thugs (including employees fired by a local bar for being lazy and/or drunk), mentally tortured me for two whole days while I was held there on no charges at all. That included one of the former bartenders from the tavern I frequented. The other one pretty much kept her mouth shut and answered questions honestly when asked by someone else who, in my opinion, had no business being inside that jail. I don’t care who she is. And I know what I heard.

Read more: Why Amber Ridge Memory Care kept me away from my dad, and how the state of Illinois reunited us

And all of this is very, very, very suspicious and not at all “conspiracy” to those who know the whole story, and by now, that includes many people. Will it all someday just go away? Just blow out to sea?

Returning to the courthouse with a sense of serenity

When I finally was “sprung” from jail by an officer associated with the agency I had relayed the initial “bad guy” information to, I was taken to the hospital (again, a place that forever will be a trigger, and I never will do business with again, even though they “forgave” the portion of my bill which insurance didn’t pay, and even apologized for how I was treated there, which is curious); and two days later, I had to go to the Rock Island County Courthouse and defend myself, pro se, against an order of protection filed by the wellness director of the memory care facility.

Read more: What really happened to me in the Rock Island County Jail? My tell all

Read more: What was the motive for what happened in the jail? My tell all, Part II

Mind you, my dad had nearly bled to death in his room from an unexplained injury two weeks prior to all of this (he told the hospice social worker, the ER doc and myself that he was struck by someone…’He got me!’ he said, and then started crying. Dad had gender dysphasia about three years prior to death (and total dysphasia the final months of his life) so a “he” often meant a “she,” but he frequently told me two workers in particular, one a man and one a woman, were rough with him).

The memory care facility nurse who called me at 5 a.m. was the one who said it appeared he had lie all night on the floor, given the size of the pool of blood, and reported that she herself had just come on duty. Rest assured I know who was on duty before her. Employees past and present have chirped like birdies.

I was hypervigilant every time I set foot in there, like any astute caregiver should be. But especially after that most recent incident, probably the third trip to the ER since he had gone in there 18 months prior. If you don’t police most elder care facilities, your resident gets substandard care. And that’s the truth. Period. Particularly in Rock Island County, where the incredibly incompetent Alternatives for the Older Adult is failing miserably in their assignment to protect our elderly.

So today I find myself at the Rock Island County Courthouse again, this time for a status hearing as it pertains to my father’s estate. By chance, it’s the exact same judge that I stood before for the order of protection, which was dismissed.

I have not seen my brother since a few weeks after my dad died. But my lawyer says it is imperative I attend the hearing or the estate could just drag on for months. It already has been 16 months as it is. And for the record, my brother and I did not end up in court (at least not initially) over a dispute between ourselves, but over a dispute with a third heir. My understanding is that my brother tried to resolve this at the last hearing, but apparently was given some poor advice that foiled this resolution, which I assume would have been amicable to all parties.

So, it will be good to see for my own eyes today what’s really going on, and to tell my side of the story, if asked.

I’m going to walk into that courthouse as if I own it, and with my head held high. As if were on assignment for the Quad-City Times, like the old days. I am going to remain calm and answer any questions the judge may have. And by the grace of God, my father’s estate will be closed, and this horrifying chapter of my life closed with it. (Although life has been bountiful with blessings during this hardship, too – my sobriety, career success, and more self-respect then I ever had had in my life. Nothing worthwhile in life comes easy!)

I have changed banks, grocery stores, restaurants – I rarely do business in Rock Island, where I live, because the odds of running into someone who is a “trigger” is just far too high. This entire county is stocked with extremely dishonest people, many of whom are community leaders and who I have known my entire life, but who I now know to be — well, frauds — to use Mitt Romney’s famed word to describe Donald Trump.

How dad and I reclaimed the family home

I already have reclaimed my family home.

When I bought out my brother’s half of the home when we inherited it when dad died, he asked, “Why would you even want ‘The House of Hell?’”

He called it that with good reason. As kids, the police frequently were at our house. Mom and dad used to beat the crap out of each other. Mom once pinned dad to the floor in the living room and held a steak knife to his carotid artery. I went downstairs screaming and a friend of my brother’s ran upstairs and pulled mom off dad. I often wonder what happened to that guy. I liked him.

My dad did abuse my mother. Mentally, especially. We didn’t know then that he was a very sick man with a rare brain disease that caused him to behave the way he did. What a horrid death he experienced. Pick’s, which you can read more about by clicking here, is a terrible disease.

Dad lost the house to mom in their second divorce in 1984, when mom was given six months to live. She died in 1995. My brother and I inherited the house and sold it; dad bought it again almost 20 years later, five years ago this June.

Shortly after mom had dad evicted from the home via an order of protection, shortly before the divorce, she moved in a man she met at Sweetwater Tap. I didn’t like it. I caused lots of problems.

And then she threw me out.

I was working at least 25 hours per week at the Quad-City Times then, as a junior in high school, and being paid a freelance rate on top of my hourly rate to cover the cities of Milan and Silvis for them. So, for a teenager, I was making good money. I paid my cousin room and board and lived with her my senior year.

Despite everything that happened in this house, it’s mine now. Mine and my dad’s, even though he no longer is with us. I even feel healed about all that happened with mom, even sleeping in the same room where she perished.

So today I reclaim my trauma, I own it, and hopefully, we all move on. Tragic as parts of my life story has been, I lead a very blessed, very privileged life. I cannot forget that. Not today, not ever.

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

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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.