How To Talk to Someone with a Terminal Diagnosis

I had been working as a counselor for less than six months when a guy on my caseload told me that he was dying from AIDS. He wasn’t sure if he contracted it from sex or sharing needles. It was late at night and he couldn’t sleep. He told me it took him a few months to feel comfortable enough to open up to me about it.

“It’s hard to focus on staying clean sometimes because I know I’m going to die soon. Every day I have moments where I ask what’s the point.”

He talked about how he had wasted so much time. He was angry at himself and others, but mostly himself. “I’m fucking scared Frank,” he said as his eyes welled up.
“I put it out of my head and once in a while I have a nice moment or a laugh, and then it comes roaring back.”

I stayed later than usual. After that, we fell into a routine. I worked until 11 pm a few nights a week. Usually he’d come into my office around 9 or 930. We’d talk about music, sports, and old movies. Usually we’d delve into some aspect of addiction and/or recovery. He didn’t talk about his diagnosis every night, but when we did, it was pretty deep. I felt inadequate to the task. I had never read anything about how to talk to someone that knew they were going to die. I had not be trained on it. I felt powerless. And then I figured out that my presence was a good start. I learned quickly to mostly listen, though I did ask questions. I never gave him advice or my perspective on his case (or death in general), unless he specifically asked. Eventually another man with a terminal diagnosis joined us. They raged, cried, and occasionally laughed in my office. As time passed, I was touched and honored by how much they shared and trusted me. Both died within two years.

One of my favorite clients ever got sober off of pills and heroin in the summer of 2007. An older male, he had trouble identifying with all the twentysomethings in group that were mostly court mandated. He hung around in an outpatient group for two years. At graduation, he gave me a water color painting that he made for me. “You told me I had to fill my time and I started fishing again. Remember when I went to Alaska late last summer with those other guys in recovery to go fishing? Well, I painted this for you. Do you recognize it?” I did. It was of the Coast Mountains. I had been dazzled by the orca-like patterns of snow on rock when I was in Alaska in the late summer of 2001. I was moved (ever since, the painting has hung in an office or at my house).

In 2011, he was diagnosed with terminal cancer. He relapsed and his health problems rapidly deteriorated. He reached out to me and I met him at an AA meeting in Clinton. I struggled to recognize him, for he had lost so much weight and his skin was ashy. We talked about anger, fear, unfairness, regret, pain, numbness and depression. I tried to help him get and stay clean, but he couldn’t put substances down for any length of time. He died a little over a year later. I went to his funeral and talked to his family. All these years later, I still carry the prayer card from his funeral in my car.

There have been others. There are two people in my life who are not yet 40 that have been diagnosed with terminal cancer (one brain, one breast). I visit my friend with brain cancer every two to three weeks. We have multi-hour discussions that touch upon everything, but we always talk about dying and death. His death. I ask questions. And listen. Sometimes he rages, though it’s rare. We laugh far more than you would guess.

One of the things that really aggravates him is when people ask if he got a second opinion or tried a specific remedy. A few months ago, I told him about my friend’s wife (breast cancer) and how one person reached out to her and told her that if she drank a certain concoction that it should help. And that it really pissed her off. He laughed and said, “It’s amazing how stupid people can be.”

My advice (the don’ts are pretty easy):

1) Unless you are members of the exact same religion and go to the exact same church/temple/wat/mosque with the exact same spiritual leader, refrain from saying it’s “God’s plan” or “God’s will” or offering up some other religious platitude. I write this as someone who has softened on religion over the last decade (I think it can be a wonderful way to be part of a community and engage in service work). Since humans organized into tribes and towns, we’ve had some kind of spiritual or religious belief system. Religion has attempted to explain (or make sense of) death and comfort both those that are dying and those left behind to mourn. But I think you should be very, very careful about using your religious explanation to help someone you know that is dying. Unless you go to the exact same religious building.

2) If you were dying, I assume that you would read a lot about the diagnosis on the internet (and hopefully books). I expect that you’d do everything you can to get cured or try to prolong your life. And yet, every person with a terminal diagnosis that I have ever spoken with has told me of at least one person who offered them medical advice. The advice could be crystals, potions, medications, Western methods, Eastern methods, eliminating some food, eating specific foods, or something else that evades me right now. I know that you mean well, but everyone I’ve talked to with a terminal diagnosis was irritated by this. Do not try to solve their problem, unless they ask you.

3) Ask them what you can do. If they say nothing, offer to give them a ride to the doctor’s office or the store. Bring food over. If they have kids, offer to watch them one afternoon or evening (if you are the responsible type). A writer that I admire lost his brother to cancer when he was 13. He talked about being on “planet cancer” and how everyone avoided him and his family. Be present.

4) Don’t make it about you.

5) Don’t talk about other people’s experience with the same diagnosis, unless they specifically ask you. They deal with their diagnosis all the time, and they have talked to lots of people about it.

6) Tell them you don’t understand what they are going through. But you will listen to them if they want, without advice. Ask them what they need from a conversation. To yell, cry, laugh, distract, mourn, ache, or plan. Everyone is different. There is a lot more here, but this is a good primer. If you find yourself in this position and want to know how to listen and talk to someone about this, we can have a quick chat about it.

The first five are easy. You just need to be aware of them. The sixth one is difficult, and most people aren’t up to it. That’s ok. If you can do 1-2-3-4-5, you are a good friend or competent family member.

What Spouses, Family Members and Friends Should Know about High-Stress Jobs, Part One

Many Americans feel very stressed, and a lot of people worry about burnout at their jobs. While I sympathize with those schedules and stressors, there are a few jobs that are in a different class all together. I have counseled thousands of people from all types of vocations, but over the last decade, I have done a lot of work with law enforcement officers, correction officers, current service members and veterans, and social workers. These are high stress jobs that affect both the workers and their families. I have a very strict definition of a high-stress job (full disclosure: none of my work meets my criteria for high stress). It means:

A) one’s physical safety is under regular or constant threat

and/or

B) one sees/deals with horrible things happening to people under 18 years old

To be clear, horrible things can mean malnutrition, verbal abuse, physical abuse, sexual abuse, burning, mutilation, and/or death.

Most correction officers meet the criteria for A. Many law enforcement officers do as well. Some service members do. Social workers who are working in prisons or child protective service agencies certainly do. PTSD or complex PTSD (C-PTSD, which the public and even most professionals don’t know about) are more common than not in people with those jobs who meet criteria A.

Unless the correction officers work in a juvenile detention facility, they won’t bump into criteria B. Law enforcement does, particularly those who deal with domestic violence calls, car crashes, and most horrifically, child sex crimes. Almost all child protection service workers come across neglect and physical abuse, and many have to deal with the fall out from sexual abuse. Those who are in the military and come upon dead children in war zones are usually haunted by those images (I’m not even going to write about those who had to take the life of a child soldier or child suicide bomber, as I doubt I have the power to explain that situation to civilians). In the summer of 2017, I spent some time talking to an Army sniper who worked as a fire fighter when he wasn’t on active duty. He told me about how difficult it was to come across the bodies of burnt up children. I asked him how common it was. He said it didn’t happen much, but that most firefighters he knew that spent 20+ years on the job had seen that. Of course, I asked him if he or other firefighters had a chance to process it with a therapist who understood trauma. He laughed and said, “Of course not.” To be clear, anyone who meets criteria B over a sustained period of time is very likely to have symptoms of PTSD or C-PTSD.

I have grave concerns for these professionals and public servants, because their work is vital to our society. They are the ones with their hands in the muck. And the work does a number on them and their families. And their families. The jobs can be overwhelming, and there usually isn’t mental health and community support to deal with the side effects of the work.

In the aforementioned professions that meet one or both of the criteria, the following conditions are more common than in the general population:

substance misuse, anxiety, depression, PTSD, C-PTSD, disorganized gambling disorder, suicidal ideation

Those public servants are also more likely to have poor spending habits (using money to feel better), act out sexually, put themselves in dangerous situations (driving a motorcycle with a helmet, engaging in extreme sports, going into buildings without backup), isolate at the end of the day, and have marriages that end in divorce.

Because most are in jobs where being tough is a value, therapy is usually not offered and often looked down upon. “People who go there are weak” I often hear or “Other people have it worse.” I tell them if they meet the criteria for A or B, that very few people actually have it worse. They usually don’t tell their spouses about their work. They might utter “rough day” or “the usual” or “you don’t wanna know” or just sigh and go silent. Some variation.

The job changes them (how can it not?). They become quicker to anger and quicker to isolate. Spouses may resent how their partner has changed. And their partner doesn’t know how to explain it. And there is a strong chance that they aren’t any good at listening to their spouse talk about their less stressful job.

To be clear, I’m not asking spouses and family members and friends to excuse bad behavior that these professionals use as coping skills. I don’t want you to be their therapist. I just want you to understand that the work is horrifying. Here is what you can do:

1) Encourage the professional to go to therapy. Continually. They need at least one person in their life that they can process these terribly experiences with continually.

2) Monitor their sleeping and eating.

3) Encourage them to exercise regularly.

4) Monitor their substance intake.

5) Come up with a way for them to signal to you that they had a particularly rough day on the job.

6) Try to understand that they will probably be poor at listening to you talk about the stressors of your job and day. This is often a common complaint from couples where one person is in a high stress job.

7) For those of you that are spouses, it is imperative that you spend time together outside of the house, at least two days or nights a month. This is important for both their stress level and your relationship (all too often, a decade into a romantic relationship, it seems like you are running a daycare/housing/taxi service with no downtime for yourselves or each other…this leads to stress, resentments and potential awful fights).

I’ll get back to this before the end of the summer. For those of you that are friends of someone in those jobs, you can play a significant part in their well being. Please do so.

 

 

Patrick M – An Appreciation of a 2019 Recovery High School Graduate

I have Patrick’s permission to share this photo and a bit of his story.

This picture was taken on Wednesday, June 12 at the 2019 Recovery High School Graduation (the full name of the school is the Raymond J. Lesniak Experience Strength and Hope High School). The high school’s recovery support is staffed by Prevention Links, a non-profit that I have worked at since the summer of 2017. The administration and the academics are provided by Union County Vo-Tech. It has been a wonderful and unique partnership between those organizations. The school has been located at the Prevention Links building in Roselle for the last few years. In 2019, Morgan Thompson became the CEO of Prevention Links. She is a Rutgers graduate (twice over), a person in long-term recovery, and (allow me to brag) a former student of mine.

Patrick struggled with substances during his freshman year. Things got worse. He bounced in and out of treatment. Switched schools. He was nasty to his parents and surrounded himself with negative peers. His grades plummeted. He was constantly in trouble. And usually high. Many people worried about his trajectory – the outlook was grim.

Patrick entered into recovery in August of 2017. He came to the Recovery High School in the fall. There were only a handful of students. While he missed the robust size of Metuchen, he worked closely with his recovery mentor, got a sponsor, spent time with his sober uncle, and began to apply himself in school. I would show up every couple of weeks and take him for a walk, regardless of whether it was hot, cold, or raining. We talked about school, his parents, girls, addiction, recovery, music, and his post high school plans. I enjoyed our walks.

The school grew and grew. This year we had almost two dozen students. Patrick was a leader and a role model. He had a bit of early senioritis, but he finished strong. And stayed sober the whole time. Patrick is going to college out of state (I wish he was going to Rutgers, but he is going to help his school develop their own recovery housing program).

At graduation, Patrick gave the student address. The NJ Commissioner of Education was there, along with some state legislators, several Union County Freeholders, the County superintendent, and a number of other officials who normally are not at high school graduations. The school has been able to thrive because of our diverse and powerful group of supporters. Patrick didn’t realize it, but he was under a bit of pressure to make a good impression. There were several speeches before him, and I could see that he was getting a little bored. From the audience, I have gave him a number of facial and hand signals to smile and bear with it.

When it was his turn to talk, he slayed it. He spoke about his addiction and the problems he caused his family. There were several moments that I teared up. He took us on a rollercoaster ride. It started quite sad. Painful. Then I felt hopeful. And pride. Near the end, he made us laugh a bunch. It was a killer speech (you should have been there).

I’ve been working in the addiction and recovery field for 16 years. There have been a lot of hard moments, in both the clinical and policy arenas. I’ve seen a lot of despair and death. I need moments like last Wednesday, when I get to see someone who has gotten sober communicate to others the joy and power of the journey. People can get clean and sober at any age, but the younger they do it, the less wreckage they have to clear. They also have a higher ceiling. I’ve been working with college students for a long time and will continue to do so. But getting sober in high school? Crazy. Inspirational. Life changing.

Great job Patrick. I’m so proud of you. Keep helping others.

The Horrifying Responses to a US Army Question on Twitter

Right before Memorial Day, the US Army’s official Twitter account asked the question “How has serving impacted you?” Swiftly and devastatingly, the answers poured in. While there were some positive stories, an overwhelming majority were lettered with fury, lamentations, regrets, pain, and mourning. These responses ring true to my experience as a therapist who has treated veterans for many years. As a current Army Behavioral Health Officer, I won’t comment on what I am seeing from servicemembers today. But as United States citizen, I was deeply disheartened by the sheer number of the tragic responses. I didn’t read all 12,000+ comments, but I probably got through 4,000 of them. I have selected about two dozen to give you a sense of it.