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

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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

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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.

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Recovering meth addict, young mother navigate CPS systems to keep children

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Editor’s note: This piece originally was published June 26, 2015, on Healthline Contributors, which no longer is live. Reprinted here with permission.

By David Heitz

For some unfortunate addicts, rock bottom doesn’t come until they’re six feet under.

But for many, it comes when they lose what’s most important to them. Usually that’s not the car, or even the house. Often, rock bottom comes when someone loses their partner or spouse, or worse, their child.

“Tough Love” is a POV documentary about two parents fighting to regain custody of their children from Child Protective Services. One is the story of Hannah Siddique, a mother in New York City. The other, Patrick Brown, is a single dad in Seattle.

You can find out how to watch the movie, which aired on PBS as a POV documentary when this column originally was written, by clicking here.

Jill Murphy is a program supervisor for the King County Superior Court Family Treatment Program. Patrick joined the program April 21, 2011, after losing custody of his daughter Natalya. Patrick, a crystal meth addict, had his little girl taken from him after falling back into meth after four years of sobriety.

Patrick initially had turned in Natalya’s mother to Child Protective Services. He felt his daughter wasn’t being properly cared for. But then he relapsed himself, got arrested, and lost custody after he had won it back from the mother.

“You have to learn to manage your disease,” Murphy told Healthline. “There are going to be rough spots.”

For many, life and death when choosing addiction or recovery is a matter of timing. The same goes for what’s saved and what’s lost.

“Addiction can be insidious. You can lose so much of your life in such a quick period of time and not even realize it,” Murphy said.

In King County, Family Treatment Court is reserved for the most serious of addicts.

The road to getting Natalya back is at times heartbreaking for Patrick, and for the people in the film who are helping him do so. Just as things seem to be going right, word gets out that Patrick had imbibed again. The reason? Waking up and not being able to see his little girl on a holiday. It was just too much, he said, and he blew the rent money on “filet mignon and chardonnay.”

At times Patrick looks pretty rough, not so much in the scenes where he’s with Natalya, but in court. A couple of times, he almost seems doomed. The judge suggests he’s “self-sabotaging.”

The viewer is left riding a roller coaster as to feelings of whether Patrick should get Natalya back. The foster family no doubt loves her, and appear to be wonderful parents. The foster father even resembles Patrick physically.

In one poignant scene, Patrick’s lawyer reminds those holding Patrick’s fate – and indeed, Natalya’s – of the law. She points out that in no way has Patrick endangered Natalya. She suggests he is being held to a level of perfection that is not realistic for any parent.

Family Treatment Court is a voluntary program. Addicts are given a strong support network that includes an advocate, an attorney and other support. The subjects are tested for drugs and alcohol every two weeks.

“Parents in the system are able to have extra help,” Murphy said. “They enter treatment faster.”

The program’s success rate is about 60 percent.

The other parent in the film – Hannah – doesn’t have any apparent problems such as addiction. While she and her husband struggle financially, there never seems to be much doubt about whether Hannah and her husband can parent.

Hannah had lost her children several years’ prior at the age of 19. After removing the children from a verbally abusive father, she moved in with her mother. But at her young age, she would go out and leave the children alone with grandma. So she lost them.

In the film, she finds herself pregnant, with the system potentially threatening to take that baby as well. The hoops she must jump through offer a view of the New York City system that is in stark contrast to the King County system, which seems to go above and beyond to reunite Patrick and Natalya.

At times, it seems contributions by the father of the unborn child aren’t even taken into consideration.

Wang-Breal hopes her film underscores the importance of child welfare reform. “If you look at the way federal financing comes, the majority of funding is geared toward foster care and adoption. What if we had given these families preventive services? Child welfare reform is about trying to change the way federal financing works so that we can keep families together.”

Oprah happiness guru Shawn Achor: Tips for family caregivers

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

By David Heitz

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

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

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

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

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

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

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

So go ahead. Be angry.

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

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

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

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

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

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

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

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I never expected either to happen.

Praise God: Reunited with dad today after 108 days apart

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

LOL.

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

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

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

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

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

Thank God it’s behind us.

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

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I fell off the wagon during my vacation. Then I got right up and hopped back on.

wreck-bar

I fell off the wagon during my Florida vacation after almost three years of sobriety.

At a place called “The Wreck Bar,” no less. During a mermaid show.

And then I was interviewed by a pirate. With a news crew.

But nothing tragic happened. In fact, I’d be a liar if I didn’t admit I had a darned good time.

I was never “a wreck” during vacation. But I’m climbing right back on the wagon anyway.

Nothing terrible happened, but drinks Friday turned into drinks Saturday, Sunday, and Monday. I had fun all three nights, but as it goes with us alcoholics, I progressively drank more each night. By Tuesday morning, it was obvious what was happening, as I had a hangover for the first time in almost three years.

My therapist had suggested I attend meetings while here. I’m not a huge fan of AA. They are a PTSD trigger for me (long story), so, in fact, I avoid them completely while at home. I did reach out to another person in recovery as soon as I got here, and had hoped to set up a time to attend an AA meeting with her, but I never heard back.

The morning after landing, I got up to go to breakfast downstairs in the hotel. The main restaurant is not open yet (the hotel has just been remodeled) and the U.S. Men’s Soccer Team had the smaller restaurant, in the lobby, exclusively to themselves the whole week.

So, that left the rest of us in the “Wreck Bar” for every meal unless we ate outside at the beach grill, and that closed every night at sundown, and did not open until 11 a.m. each day.

I knew I would have an urge for a beer, especially on vacation, in an oceanfront resort in Fort Lauderdale. I figured if the urge just got to be too much, I would have an O’Doul’s, although even those do contain tiny amounts of alcohol, despite the belief that they do not.

No O’Doul’s at the Wreck Bar.

Interviewed by a pirate – with a television crew — during the mermaid show

While live-broadcasting the world-famous mermaid show at the Wreck Bar on my Facebook page, I was having a grand time with the other guests. What the hell I thought, I’ll have a beer.

I mean, it’s a mermaid show. At the world-famous Wreck Bar.

But it gets better. Suddenly, a “news crew” approached me after the show ended. The next thing I knew I was being interviewed – by a man dressed as a pirate – about my opinion of the mermaids.

Oh dear.

It probably was obvious that I had had a few. So, I’m not even going to mention what “news” organization it was.

I could have just not told anyone I fell off the wagon after almost three years. But why would I conceal it? It’s a big part of the recovery experience. It happens. A lot. It’s rather incredible I went almost three years.

Writing about these issues is my livelihood (which is why some suggested I not say anything about it).

But that’s not how I roll. I believe in honesty and authenticity. If anything, maybe some people will find me easier to relate to now that I had a “relapse.”

I once had a colleague who had a gambling problem. So much so she trespassed herself from all the local casinos.

When she relapsed, she wrote about it. It was one of the best columns she ever has written, in my opinion.

I don’t always see eye to eye with this person. So, in a way, falling off the wagon, for me, was sort of a reminder that all of us have shared experiences in life.  It’s important to be authentic and to own your sh*t.

And to be kind. For it sounds cliché, but everyone is fighting a battle you know nothing about.

Life really is just too short. The world is not going to end because I “relapsed” on my Florida vacation, and it does not make me weak or a bad person. I’m not “going to die,” as some like to tell people who relapse, particularly if their form of recovery doesn’t jive with theirs.

Recovery is a personal journey. There is no one way for staying sober.

I wish I had not drank. Especially four nights in a row, even on vacation.

But I’m owning it. I know I’m an alcoholic. And I love myself way too much to slide back down that slope.

Uber snafu takes me to Laundromat instead of SMART Recovery meeting

Tonight, I tried to go to a SMART Recovery meeting. I had my first experience with Uber. It was a cluster, and I didn’t make the meeting. I ended up at a coin laundry instead. You can read all about that by clicking here.

The second Uber driver took me back to my hotel after the first driver took me to the right address, but in the wrong city. I was visibly upset about the snafu, though not necessarily with Uber. The driver explained how getting frustrated and upset over something I could not control would only upset me some more and cause me to drink even more.

That’s exactly right. Smart man.

So, when I got back to the hotel, I spoiled myself with snapper, went upstairs and gave thanks for this beautiful vacation, and went to bed. Sober. At 8 p.m. Much as I have done every night in the Quad-Cities beginning two and a half years ago.

Many people have not been able to relate to how I’ve maintained sobriety with what appeared to be relative ease.

Now I know it’s not as easy as it looks, and just how slippery the slope can be.

With that said, I’m even grateful for my “relapse” (hate, hate, hate that word). There’s nothing wrong with a wake-up call that could have ended up much, much worse than a hangover after four fun nights. But if I don’t stop now, my luck could run out.

I’m SMART enough to know that.

How my first ride with Uber turned out to be a huge cluster

uber-photo

(Photo courtesy Pixabay)

When you’re in a community with hundreds of miles of coastline, don’t expect to punch 1301 S. Ocean into Uber and necessarily expect to end up where you intend to go.

I learned that the hard way.

I had intended to attend the SMART Recovery meeting in Hollywood Beach Tuesday night. I had reached out to the facilitator and explained that I was interested in meeting with him before the meeting because I would like to start a SMART Recovery group in my community, the Quad-Cities. He agreed to meet with me before the meeting about that.

I had called him earlier in the week too, and had hoped to meet with him Monday. But as it turns out, that meeting no longer is active.

Before he even had called me back, I called and explained I was meeting with a friend and would not be able to go to the Monday meeting. He ended up calling a couple of days later, said that meeting no longer was active anyway, so we agreed we would meet tonight, Tuesday, before the Hollywood Beach meeting.

He told me the meeting was at 1301 S. Ocean, in Hollywood Beach, not far at all from my hotel, B Ocean Resort, up A1A.

So when I punched 1301 S. Ocean into Uber and it picked a spot three miles from the hotel, I assumed that was it.

No, it ended up being a coin laundry in Pompano Beach. The other 1301 S. Ocean, where I was supposed to go, would have been the other direction, just a bit further away from my hotel. The meeting is held at the Hollywood Community Center. Obviously, Uber just picked the closest one. I could not tell the difference on the Uber map.

Then, once I arrived at the coin laundry in Pompano Beach, because of the way Uber works, I had to get out and request a new Uber driver. By the time the next Uber driver came, it was too late to get to Hollywood Beach in time for the meeting.

I called the meeting facilitator and apologized, and I definitely think he thought I was a flake alcoholic, at least at first. Oh well, all of that’s out of my control. I could only control how I reacted to this cluster.

I explained the story to the second Uber driver, who simply drove me back to my hotel. He was very cool about it. He reminded me that I can’t always control what happens in life, but that I can control how I react to it.

Which is exactly the stuff that gets talked about in recovery meetings. So, mission accomplished.

I will say this about Uber. Both drivers were courteous and had very nice, clean automobiles. One had a Nissan Pathfinder; the other a Nissan Sentra. The roundtrip cost of my unintentional trip to the Laundromat was $25.

Puddle jumpers to Cuba: Get them while they last, it seems to me

cuba

Last night I hung out with the Coolest. Chick. Ever. Her name was Jessica, and she’s a flight attendant for Southwest.

We had so much fun. Like me, she has been around the block. A million times. And she’s from Chicago.

So, my strange stories of the past 20 months hardly seemed strange to her. In fact, she knows more than most people probably would like to know. And I can relate to that.

OH-KAY.

So, to change the subject to avoid triggers, I asked her about flights to Cuba. Because she has mentioned she has been jetting to Cuba.

She said the island is stunning, unspoiled by cruise ships and other pollution. But she said if you ask Cubans on the flights what they think of the new open border policy with the U.S., they say, “I would never comment on that.”

They’re still very scared, she said.

Tourists, meanwhile? They’re saying it’s pretty cool, “not like what you would think,” and that it feels pretty safe. She said the cops on the street corners look bored, according to American tourists on the flight.

I would have loved to have taken a puddle jumper to Cuba while I’m here, but I don’t have a passport. And of course you need a passport for anything now. To think when my mom and I flew to Jamaica freshmen year of high school, you didn’t even need a passport to go there.

I remember the captain announcing that “Cuba is off to your left” and looking down and also have the impression of “Wow, that looks beautiful and unspoiled. Even more so than Jamaica from the air.”

But as someone said just now as I was writing this, “You can’t see them holding the signs that say HELP!”

Good point.

I just can’t imagine the open border thing is going to last for long. Go see the Cuba time warp while it lasts.

B Ocean bonus: Living under the same roof with the U.S. men’s soccer team

soccer

What could be better than escaping the Quad-Cities for South Florida in the dead of winter, just days before an ice storm hits?

Staying at the same hotel as the U.S. Men’s Soccer Team.

Oh yeah.

They stand outside each other’s doors talking to each other wrapped only in towels. Towels that are usually half falling off.

They are guy’s guys, for sure. Not friendly, not stand-offish either. But very much stick to themselves.

They are staying in the same wing as I am, the former Sheraton Yankee Clipper, now part of B Ocean Resort.

pool-party

They occupy the rooms on each side of the towel cart in the above photo. They swim in that pool in their underpants.

And that’s the pool with the windows in it (a la the famed mermaid show that I wrote about yesterday and live broadcast on my Facebook page).

Naturally I would have loved to have taken a pool party photo, but I draw the line on paparazzi-like activity!

The Japan Men’s Soccer Team is staying here too, but other than the first day, I haven’t seen them much. Today they all were packed into the cubicle of the hotel gift shop. They too seem to have a certain playfulness about them. In fact, they are much chattier (among themselves anyway) and seem a little less serious than the U.S. team.

Anther B Ocean Resort bonus: The “Signature Scent”

The first thing you notice when you walk into this hotel is the smell. It smells delicious.

The general manager explained that the hotel has a “Signature Scent.” It’s thyme and white ginger lily. They literally pump it through the air vents. It’s incredibly intoxicating.

hotel-outside

Above is a photo of the hotel from the outside. I’m staying in the main tower, the one that looks like a cruise ship. Another tower will be constructed soon that will have sweeping views of not only the coast but also the Intercoastal Waterway.

A restaurant will be opening at the resort soon called “The Naked Crab.” It will feature the delectable dishes of chef Ralph Pagano of Hell’s Kitchen fame.

Friendly Florida proving to be a fine fit for me

I never expected Florida to be so friendly. But I suppose everybody is friendly when they’re on vacation.

I can talk with just about anybody – and do. People respond in different ways. Today I spoke with a woman outside the Ritz-Carlton who had this adorable little dog. “Is that a Maltese?” I asked. “No, it’s a bichon and Cavalier King. A Cavachon.”

Precious.

I also have been hanging out with a couple from Jersey. I love their accents. He’s very friendly. She is too, but very fannnnnn-sayyyyyyyy.

Met a very nice looking, very serious guy from New York City as I was typing up this column. Shared a story with him that I haven’t written for all of you yet. It’s coming.

He wished me luck as he left. I don’t think luck’s going to have anything to do with how the story turns out, however.

See you tomorrow.