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.”

Tip Jar

Thank you for helping me by donating a small amount toward what I do. You can adjust the amount donated by scrolling the up and down arrows next to the $10 denomination

$10.00

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.

Check out my portfolio of paid reportage on mental health issues

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.

Check out my portfolio of paid caregiving/aging reportage

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.

Check out my portfolio of paid addiction and recovery content

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.

Check out my celebrity interviews

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.

Check out my portfolio of paid mental health reportage

Tip Jar

Thank you for helping me by donating a small amount toward what I do. You can adjust the amount donated by scrolling the up and down arrows next to the $10 denomination

$10.00

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

rhonda-and-dad

This piece originally was written last year for Caregiver Relief as one of several point-ups to the presidential election. Reprinted here with permission. Special thanks to Diane Carbo and Rhonda Long.

By David Heitz

Rhonda Long’s story is one of a middle class, hardworking family that is getting the short end of the caregiving stick.

Rhonda and her parents do not qualify for Medicaid. Medicaid pays for long-term care for the elderly, but only once they become completely broke.

Medicaid also provides day care for the elderly, which, in theory, gives a caregiver time to work a part-time job, since so many people have to quit their full-time jobs to take care of mom and/or dad, like Rhonda. But in so many states, like the despicably fiscally irresponsible state of Illinois, even those services are being cut. The front page of my local newspaper, The Rock Island Argus, read yesterday: “InTouch Adult Day Services to Close.” The reason? The state owes it $6 million in Medicaid payments. They just can’t keep going. (Editor’s note: InTouch later was taken over by a private company from Lutheran Social Services, but I am not sure of the current status of the services it provides).

What will happen to these people? Well if their children choose to care for them, they likely will end up on welfare while trying to also get by with mom or dad’s small Social Security check. If the care ends up being more than a family caregiver can handle, and it can be under such difficult stresses and circumstances such as dementia-related illness or both parents ill at the same time, the state will intervene and place the parent in a nursing home. Once the parent is completely broke, the state will pick up the $5,000 to $8,000 monthly nursing home bill. When it’s all over, the states goes into the homes of these people and auctions off all of their belongings to make up the difference. The children are left with nothing.

Related News: Dementia-friendly America communities help elderly stay in their homes longer (Click on the link to learn more)

Rhonda long has wondered why the government can’t pay caregivers a small living wage, or at least foot the bill for respite care so they can get a part-time job elsewhere.

But with the state of Illinois at least proving unable to do that for even the poorest of the poor, one wonders how it could be accomplished for the children of people drawing Medicare. I guess lottery funds would be one idea. Of course, everyone likes that going to the schools.

Something to think about: When we care for our children, we get to see them grow up and care for themselves. When we care for our parents, they only get worse.

Not a pretty picture, but it’s reality.

Meanwhile, Rhonda has lived with her mom and dad in their house for 11 years. “They had helped me out in a time of need and in return I told them they would never see the inside of a nursing home as long as I could help it,” she told Caregiver Relief. “I honored my commitment and continue to do so.”

Rhonda’s dad passed away in June. She is pictured with him here. Through the years Rhonda’s dad had four heart attacks (Rhonda quit her job after each one) and eventually chronic kidney disease, atherosclerosis, PAD, spinal stenosis, dementia and many other ailments. After his fourth heart attack, he became bowel and bladder incontinent.

He died at home in June, under hospice care, but it was very difficult for Rhonda and her mom.

Now, mom has Alzheimer’s. Remarkably, Rhonda feels “guilty” about having a meal to herself now that dad has gone. At least mom is in good enough shape were she can leave the house a couple of hours a day.

But let’s face it. Mom won’t be that way forever. Memory care, if you dare trust any of those facilities (memory care is a social model, not a care model), costs about $5,000 per month. A nursing home? At least a thousand per month more. And remember: No help caring for your elderly parents until they are broke. Click on the link to learn more.

“In the last 11 years I have been away from this house for my own pleasure a total of 32 hours,” Rhonda told Caregiver Relief. “And I had to beg for that. I love my brother deeply, but he just doesn’t get it. I went through and beyond caregiver burnout.”

Rhonda said that in retrospect, “I think if we had the money, respite care would have been very beneficial for all of us. I would have been able to be refreshed emotionally, and I would have had some time to be a daughter and not always the caregiver.”

So in the meantime, Rhonda lives with her mom in a house that has a reverse mortgage. When her mom dies, Rhonda will be an orphan and homeless.

Rhonda’s questions for President Trump: Why can’t the government pay caregivers a small living wage, or at least foot the bill for respite care so they can get a part-time job elsewhere?

Tip Jar

Thank you for helping me by donating a small amount toward what I do. You can adjust the amount donated by scrolling the up and down arrows next to the $10 denomination

$10.00

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

judys-parents

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

By David Heitz

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

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

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

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

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

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

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

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

Caregivers often end up financially devastated

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

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

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

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

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

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

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

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

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

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

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

And now her husband has cancer.

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

Please help.

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

Tip Jar

Thank you for helping me by donating a small amount toward what I do. You can adjust the amount donated by scrolling the up and down arrows next to the $10 denomination

$10.00

LGBT caregivers: The isolated among the isolated; what Baltimore is doing to help

img_0139-1

Editor’s note: This piece originally was published in 2015 for the website Caregiver Relief. Reprinted here with permission. Special thanks to Diane Carbo.

By David Heitz

There’s a double-edged sword when it comes to LGBT people and caregiving.

On the one hand, LGBT people often fall into the caregiver role. Many caregivers, gay or not, will attest that when you don’t have children and/or a spouse, you tend to be elected mom’s or dad’s caregiver by your siblings. The idea is that you don’t have kids to look after, you don’t have a spouse to coo over, so “it’s just easier” for you to do it.

Don’t get me wrong. Spouses often end up caring for their spouses too, often with no help at all from their kids, if they even have any. And that’s certainly no cakewalk either.

But time and again, I see many gay and lesbian people caring for mom or dad, grandma or grandpa, an aunt or an uncle, or even just a friend.

When I first met other caregivers like myself, which really never happened until my dad went into a facility, I was shocked by the sheer number of “family” (as in “friends of Dorothy” as they say) that seemed to be all over the place.

And here’s the other side to the LGBT caregiving sword. Going back to being that person with no spouse, and no children, what does that mean for you when you get old?

It means you might be by yourself. Eighty percent of all caregivers are family members, statistics show. So who takes care of you if you have no family? (You can read about that in part II of my report on LGBT caregivers)

It’s a cruel, uncomfortable riddle increasingly coming to light and being addressed in communities from coast to coast, albeit slowly.

Family, friends either don’t care or don’t get it

In Baltimore, Chase Brexton Health Care has launched an initiative called SAGECAP. The initiative provides resources, education and support for informal, unpaid LGBT caregivers.

The truth is, all caregivers need way more help than we’re getting. So what makes caregiving any harder for LGBT people?

“The reality is that many more LGBT older adults are cut off from family and depend heavily on support from friends and other caregivers,” said Nate Sweeney, executive director of Chase Brexton’s LGBT Health Resource Center. “Through SAGECAP we can connect LGBT caregivers and elders to culturally competent and welcoming service providers. We’re encouraged by the tremendous response from Baltimore area providers who want to help improve critical services for the often isolated and marginalized LGBT population.”

Caregiving expert Diane Carbo has been encouraging me to write about being an LGBT caregiver. Until I received the Chase Brexton news release last week, I thought, “What makes LGBT caregivers any different from any other caregiver?”

Well, with dad already into his second facility, and with 13 years having now passed since I moved back to Illinois from Los Angeles in 2002 to help care for him (at a time when my own life admittedly needed rebuilding), I forget how difficult it has been.

I wish I could say that the stereotype of gay people being narcissistic isn’t true, but often it is true. While lots of gay people my age eventually find themselves in the caregiving role, many others are far too wrapped up in their hedonistic lives to be bothered which such things. Until you become a dedicated caregiver and meet the other LGBT people doing this same thing, you don’t find a lot of compassion unless you’re looking for it.

And there’s another sad truth. Many of us have relatives who, because we’re gay, just don’t think too highly of us. As we enter our middle-age years, particularly if one parent already has passed, there really isn’t much support from our families. I have two cousins – Cindy and Brad – who have been there for me in one way or another, and I’m grateful for that. But they’ve got kids, spouses, and aging mothers themselves. They already have lost their dads, as I did my mother in 1995. They understand what I’m going through, and that it’s difficult.

When discrimination simply can’t be tolerated

When you enter into this caregiving stuff, it’s extremely overwhelming. The pharmacy becomes the first demon who enters your life. Then the doctors. Then, the facility.

Oy. The facility.

You will find that some facilities may employ people who care for your loved one who don’t much like gay people either. Sometimes it’s the culture they grew up in. Other times it may be their political views. Sometimes you will find family members of others at the facility who don’t care for your “gay lifestyle” either. Some are rude enough to make it perfectly clear.

I can tolerate, ignore even, people who don’t like me because I’m gay. But if they are being paid thousands of dollars per month out of my dad’s hard-earned life savings, while it’s circling the drain, I won’t tolerate them being rude to myself or my father. I’ll speak up. Some people don’t like an angry queen up in their face, even after they’ve gotten up in your face.

The gay factor often just creates more poo on top of the poo that caregivers face every day. And the poo is endless. The paperwork. The voice mails you leave for the adult protection agencies that never are returned.

Feeling like nobody gives a rat’s bottom about your loved one. Feeling like you’re all alone in the world.

It’s really, really tough. I got sober 15 months ago, when I knew what a nightmare I had ahead of me. And thank God I did. But when you get sober, if you’re going to stay sober, you’ve got to say goodbye to all of those people you partied with. You simply must. So for me, that led to further isolation. But with my writing and with social media, it really hasn’t been so bad.

How the Maryland program works

Chase Brexton, through a partnership with SAGE (Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders) created SAGECAP to help LGBT caregivers who are as lost and frustrated as I once was. They’re offering one-on-one counseling, referrals to financial aid, legal and medical assistance, and other information. And they do it in a safe and welcoming environment.

It’s simple. Being a caregiver often feels like a punch in the gut. Every day. You need to be in a place where you can be yourself, where you can be comfortable expressing yourself, when you’re looking for help.

“Providing long-term care can feel overwhelming, and can often be even more of a challenge for members of the LGBT community, who may be isolated, living without family and lacking good access to service,” the Chase Brexton news release states. “Despite recent progress, accessing services can be difficult and uncomfortable, and LGBT aging adults access services at a lower rate than the rest of the population. Education is key to finding these services and programs, and can help keep a loved one home where they want to reside.”

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

12019777_10153475408851355_1938236406875694874_n

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.”

Oprah happiness guru Shawn Achor: Tips for family caregivers

achor

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.

Tip Jar

Thank you for helping me by donating a small amount toward what I do. You can adjust the amount donated by scrolling the up and down arrows next to the $10 denomination

$10.00

I never expected either to happen.

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

joan-hc

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

By David Heitz

I met Joan Lunden face to face Friday!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

Tip Jar

Thank you for helping me by donating a small amount toward what I do. You can adjust the amount donated by scrolling the up and down arrows next to the $10 denomination

$10.00

Why FTD is so hard to talk about – my dad’s story

 

ftd-pic

Originally published Jan. 5, 2015 on Healthline Contributors. Reprinted with permission. This piece had more than 20,000 page views on Healthline Contributors as of Nov. 1, 2016. My dad died in September 2015.

My dad has a lot of difficulty getting the words out. I’m having a problem getting the words out, too.

A neurologist diagnosed my dad with frontotemporal dementia, also known as FTD, or Pick’s disease, a year ago. Shortly after that he was placed on hospice care in the memory care community, where he already had been living since July 2013.

FTD occurs when the frontal lobes of the brain begin to shrink. Little is known about what causes this, but people who have it often have an abnormal amount of a certain type of protein called tau in the brain cells.

When the lobes begin to shrink, it impairs what is called “executive function.” A person with FTD cannot understand how to even begin a task, even if they know what the end result is.

I’ll give you an example: I went to see Dad the other day, and the hospice worker was down in my father’s apartment preparing him to go upstairs to the great room. So I went upstairs and waited so they could do their thing. I know this is not an easy daily task for them. If I’m there, dad screams, shakes his fist, etc. Honestly, sometimes I’m amazed how they do it. And so grateful.

Soon the elevator doors opened, and the hospice worker wheeled out Dad. He had this extremely strange look on his face (see photo with story). I asked him what was wrong, but he would not respond. This happens a lot with people with FTD. Sometimes they don’t speak. In end stages they usually don’t speak at all. The hospice worker told me he got mad at her while she was brushing his teeth.

So for 25 minutes I sat with him in the dining room. He had this sullen look on his face and would not speak at all. I was very upset. Finally, something occurred to me. I said, “Dad, is there something in your mouth?” He just looked. I handed him a cup and said, “Dad, please spit out whatever is in your mouth.” I showed him how to spit.

And he spit out the toothpaste.

He had forgotten how to spit out the toothpaste. This is executive function.

I, on the other hand, am having a tough time spitting out the words, because when you write about your experiences with this disease, you want to be real, but also diplomatic. Let’s put it this way. FTD has a way over time of creating hurtful feelings among networks of people. By the time things get really bad, or to a crisis situation, the hurt can explode due to a lack of understanding about the disease. Like throwing onion rings into the fryer.

 What is FTD?

Here’s a little bit of background about FTD that you can find right here at Healthline.com. A link to this information is below.

There is no cure or treatment for FTD. One of the huge problems is that FTD isn’t always easy to diagnose. Symptoms can develop slowly over time, or onset and death can come within two years of diagnosis, or less. My dad’s symptoms very much developed over time, and only now do all of the pieces fit into something that has puzzled all of us for many years.

There isn’t a test for FTD. Neurologists make determinations based on a patient’s medical history, interviews with family members, magnetic resonance imaging (MRI), computed tomography (CT) scan and position emission topography (PET) scan. The imaging techniques help a doctor rule out other problems such as tumors or stroke. They don’t necessarily confirm a diagnosis of FTD.

My dad landed in a facility in 2001 with symptoms sort of similar to what’s going on now. At that time I moved back to the Quad-Cities from Los Angeles, and he was taken out of the facility and rebounded. He did much, much better for several years before beginning to go downhill again in 2006 or 2007.

My dad doesn’t have Alzheimer’s disease, but that was what doctors initially thought. Even now when people ask if he has AD I sometimes just go along with it and say “yes” because I don’t want to bother explaining FTD. But those of us going through this must explain it.

FTD is different from Alzheimer’s in that it doesn’t always affect older adults, it doesn’t always impact memory the way Alzheimer’s does, and it often kills a person much more quickly. So Dad initially was diagnosed with Alzheimer’s. Talk about a disease that carries stigma. I couldn’t even say it in the presence of some family members. We referred to it as the “A word.”

You’ll find that when someone is diagnosed with dementia, the layers of denial that others have wrapped themselves in can be many layers thick. Again, like a stinky onion.

With FTD, there’s not a lot of stigma because it’s not something you hear about a whole lot. Most people don’t even know what you’re talking about when you say FTD, I’ve found.

Drama in All its Ugly Forms

People often joke about the amount of drama I’ve always had in my life, and I’ll admit to an extent to being a “drama queen.” But people who live with someone who has FTD will tell you the disease is all about drama.

It’s common for patients to display inappropriate outbursts. There is no couth filter on a patient with FTD. Racial slurs, sexual aggression and even violence are possible. The stress placed on a family dynamic can be insurmountable. Patients with advanced FTD usually require 24-hour care in a facility at some point. It’s truly more than one person can handle, I firmly believe.

In my FTD support group, I’ve heard a few stories of spouses who get divorced and then remarry. This struck me because my parents did the same thing. In a recent program about FTD on the Discovery Network, a woman talked about remarrying her husband after he explained he knew something was wrong with him. He needed her, he said, and she felt bad for him.

My parents remarried just weeks after my dad was approved for Social Security disability. He came back from the renowned Mayo Clinic diagnosed with a psychiatric problem (but not FTD … in fact, it was a rather obscure diagnosis). This is when he was in his early 40s. Today he is 76.

I’ll spare my family the embarrassment of sharing the details, but we had lots of fighting in our house through the years. Even the kind where the police are called. I hear stories every day in my FTD support groups that are replays of what my own family went through, right down to children sometimes being afraid of their parents with FTD. It’s heartbreaking.

Tick-Tock: My Dad’s FTD Timeline

What’s even more heartbreaking is watching a person with FTD attempt to hold on to their dignity as the disease slowly destroys them. My dad has been incontinent nearly two years and now is unable to walk or even stand without help. He still speaks, but it’s starting to be less and less. Some days he can feed himself pretty well; other days he has a lot of difficulty.

I already had written the first paragraph of this column – about dad not being able to get the words out – when on Friday he blurted out, “I can’t make the words anymore!” after stuttering a long time while trying to tell me something he obviously thought was important.

During the past couple of years dad’s FTD has progressed to that. It began with a sharp downturn that began a few years ago. Among the things that were happening:

*  A sudden inability to manage his money or use a telephone.

* Sitting in front of Spanish television for hours when he doesn’t speak a word of Spanish.

* Complaining about loud music coming from the church across the street during times of total silence.

* Urinating repeatedly on the bathroom floor.

* Constant falling.

* Filling the coffee decanter three times (or more) when making coffee in the morning, and then letting the coffee drain all over the floor, and eventually down into the basement where I slept.

* Throwing burning cigarettes into the trash can. I put out two fires shortly before he went into the facility.

Prior to all of that, there were symptoms I and everyone else apparently chose to ignore. He would ask the same questions over and over. No matter what you’d say to him, the answer was “Huh?” This is because people with FTD lose the ability to understand language.

I took him to get hearing aids, and the audiologist said there was some minor hearing loss. But even before that, dad’s primary care doctor had told my brother it’s not that your dad can’t hear, he doesn’t understand what you’re saying. When this all went down two years ago, that didn’t make a lot of sense to either of us, which is why I took him to the audiologist anyway. Now it all adds up.

A Time to Forgive, to Forget and to Educate

Before moving in with dad a year before he went into the facility, I’d check on him several times a day. I’d go in the mornings before work and he would say the meanest, nastiest things to me imaginable. He often criticized my work, for which I am very proud. It hurt me deeply, and for many years.

I would go into the office saying horrible things about him. I had no idea he had a rare disease – I just thought he was a mean person who had become even meaner with old age.

The diagnosis, therefore, was a game-changer. I’m sure he did send my mother over the edge (she ended up divorcing him a second time before dying of breast cancer in 1995). And I went through an initial phase of extreme guilt after his diagnosis. I frequently screamed right back at him when he would treat me so poorly.

And there’s so much more to this story that I’m just going to leave out. He’s been through enough. We’ve all been through enough.

People who live with FTD find themselves constantly pointing fingers – and having fingers pointed at them. Instead of pointing fingers, maybe we all should at least find solace in the validation of the diagnosis. The pain so many of us have endured is in fact no one’s fault – above all, not the patient’s.

Tip Jar

Thank you for helping me by donating a small amount toward what I do. You can adjust the amount donated by scrolling the up and down arrows next to the $10 denomination

$10.00

Read my Healthline News story on the NIH funneling dollars toward FTD research by clicking here.