Adventures in the Wild Wild West

“CBD, you must try CBD, the non-psychoactive ingredient of cannabis,” I tell my family, my friends, or anyone who tells me about their problems with sleep, joint and nerve pain, anxiety, and depression. In my circle this happens to be a growing number of folks of all ages. My wife calls me “a pusher,” and I have to laugh, but I’m serious about my advocacy and have gotten a range of my people to start using medical marijuana.

I’m an enthusiastic user, myself, at 62, inhaling this moment in California history, when the whole cannabis industry is in extreme flux.  ”It’s like the wild wild west,” observes Leib Ostrow, the founder and CEO of CBD Alive, a startup company in Humboldt County that produces medical marijuana from seed to bottle.

Leib, a serial entrepreneur who left the music business for the cannabis business, is one of the many people I spoke with on my quest to obtain medical marijuana for my 88-year old mom who suffers from dementia.  I spoke to entrepreneurs, growers and manufacturers, sales and distribution managers, dispensary staff members, caregivers, senior facility providers, and doctors, as well as a wide range of users, as I tried to accomplish the unexpectedly monumental task of getting my mom medicated. 

I had a much easier time getting medical marijuana for myself. About six months ago, suffering from back pain, nerve pain, and sleeplessness, I decided to try medical marijuana.  After doing a lot of research, I concluded that it could help me, as well help my mom, who continues to struggle on her prescription medications.   I procured a California State medical marijuana license by going to a prescribing doctor in San Rafael, whom I identified on the Internet. An older, long silver haired doctor with a gentle manner, she examined me and then signed a  “Therapeutic Cannabis Recommendation letter” that registered me with the state of California with an identification number.

This letter, which cost $100, must be shown at dispensaries, or to delivery services.  Then for good measure, I registered for a California State medical marijuana ID for another $100. With this ID, I can avoid paying about 15% in State Sales Tax.  There are different tax rates on marijuana – state, and local.  Medical marijuana is taxed and priced lower than recreational marijuana, which is taxed at the rate of about 32-36%. 

I hadn’t smoked pot myself, for many decades, though I fondly remember splitting lids of cheap Columbian weed with my friends and laughing a lot when I was a teen in Denver, Colorado. Then marijuana went off my radar. I was aware of its medicinal purposes in San Francisco in the 80’s, especially as men with AIDS used it to help with wasting. I interviewed Dennis Leary back in those days, as he was on the front lines of marijuana legalization activism. 

I watched with horror, as weed became something that Black and Latino people got incarcerated for using in the 90’s, and still do. From age sixteen, I have always believed in decriminalization, but it’s taken several decades for this to happen. When San Francisco and Sonoma County District Attorneys announced in January, 2018, that they would expunge and release several thousand marijuana misdemeanor and felony convictions, I felt a measured moment of happiness.  But these people didn’t belong in prisons in the first place. 

While I followed the progress of Colorado legalizing recreational marijuana with fascination (voters legalized cannabis there in 2012, and it took until 2014 to go into effect), it was still fairly far from my daily life. I hadn’t visited Colorado except on short ski trips, so I hadn’t seen any of the changes in action.  A friend from grade school had started an edibles bakery business outside of Golden, Colorado, which I found interesting, because she had previously sold real estate; the very straight and uptight brother of a high school friend had become a high profile cannabis business person, much to my surprise.

Although I was a fan of Jenji Kohan’s marvelous series Weeds, starring ex suburban mom pot dealer, actress Mary Louise Parker, marijuana resurfaced in my life only a few years ago, as a substance that my teenage daughter and her friends liked using.  Only instead of buying seed and twig filled baggies from a friend’s older brother, these young people, as well as people of all subsequent ages, obtained medical marijuana licenses, visiting nearby dispensaries to choose from a multitude of products for both recreational and medicinal purposes. 

Facebook’s micro ad targeting recently started putting ads for cannabis-related products on my news feed. They must be following my research activities, as I am using the Internet to investigate this article.  There are so many new products on the market (edibles, time release capsules, tinctures, salves, rosins, and vaping cartridges, along with weed of many different strains), available through local dispensaries throughout the state, or through online ordering,

Because of federal law, someone in a state that does not have medical or recreational marijuana, can’t obtain these products, unless they visit a state that has legalized recreational marijuana, sold in dispensaries.  Controversies rage weekly about opening dispensaries in neighborhoods throughout the Bay Area. There is only one dispensary in Marin County where I live, and many Marinites obtain their product by utilizing home delivery services.  Who exactly, I wonder, objects to selling alcohol in stores or having CVS or Walgreen’s in their local shopping centers?

I visited my local dispensary in Fairfax, the first medical marijuana dispensary in the state, opened by Lynn Shaw in 1996, after Prop 215, California’s Compassionate Use Act passed.  The Federal government shut her down in 1998; now, after over twenty years of litigation, Shaw, who suffered financial hardship and was prohibited from working in the cannabis industry for five years, finally was able to reopen the dispensary in June of 2017.  Happy to support her business, I bought myself a tincture from a company called CBDAlive, called “Abundant” with ratio 20:1, CBD to THC. I took the tincture before bed at night, and it helped tremendously with my sleep. I am convinced it also lessened my inflammation and nerve pain. I started telling my friends about my experience.

Last night a Muslim friend, who has a travel intense technology job with Amazon that leaves her with a weakened immune system and lung problems, stopped by for a cup of tea.  As she left I sent her a text with two links to articles about using CBD/THC for these health problems.  When she told me that her hajib wearing sister in England had sent her an email that day warning her to be careful because April 5th had been declared “Kill a Muslim Day,” by some white right wing extremist group according to some news report in the UK, I responded, “I’m so sorry.”  Then I added, “The CBD also helps with anxiety because we live in a time where shit like this is happening.”

Early one morning on my walking path I met two young men in their late teen’s/early twenties.  They asked my dogs’ names and we got to talking. The young man in an orange cap and powder blue sweatshirt, tells me he is back in Greenbrae on Spring break from Cal Poly, where he studies business; the other Hoodie wearing young man, lives and works in Marin.  “He also plays baseball,” the local friend bragged about his returning buddy.  “Nice, “ I said and went on my way. “You guys have a fun day together.”

When I circled back from the loop I take, I passed the young men sitting on a low concrete wall. They lit up a pretty brown joint.  “It’s early for that,” I laughed.  “Want some?”  I politely declined to take a hit.  “I bet you can’t smoke and play baseball,” I said. “No, I don’t do that,” the orange hat guy assured me. “ Well, I couldn’t possibly manage fastballs coming my way if I was high,” I noted.  We laughed. “Have you heard of the kid who took medical marijuana for seizures,” the hoodie guy asks.  “The seizures just stopped -- instantly.”

“Yes, epilepsy is being effectively treated with cannabis.”  I concur.  Then I tell them that I’m a writer and I’m working on a piece about the benefits of medical marijuana – especially CBD with a touch of THC.

“That’s cool; my mother has MS and she takes it,” the Cal Poly guy tells me.  “It’s saved her life. She can walk now.” He leaned in to share a bit more of his mom’s story  -- a single mom, diagnosed with MS at age 40. “The MS is in remission, though?”  I ask. “Yes, “ he says.  “Do you think it is because of cannabis and CBD?” “Yes, he grins in confirmation. “Well, I’m glad your mom is doing well. Thank goodness that California has legalized cannabis.  Now we just have to change the Federal laws,” I remark. “How?” he wonders, and we talk awhile more about overturning the Congress in two years, and the need to decriminalize drugs in our country. “We shouldn’t have people in jail because of drug violations,” he opines.  “Especially since so many of them are also people of color,” I add. 

I am always pleased to spend time on the same frequency as thoughtful, conscious, compassionate, courageous, and future minded young people. “You’re a business person,” I say to the Cal Poly student.  “The marijuana economy in California is taking off.  There are a ton of businesses for you to study and work for if you want.” He likes the idea, though his parents may not. We spend another fifteen minutes discussing the challenges of being a marijuana entrepreneur, and then I have to get going.

On my afternoon walk, I stopped to chat with Susan, the owner a beautiful brindle greyhound rescue named Nico; she explained how members of her greyhound rescue group use CBD to calm their shy and nervous dogs.  In California, even dogs take CBD with great results.

I recently vacationed with my college friend of 40 years from St. Louis, who came upon my bottle of CBD /THC tincture.  She tried some, as she suffers from chronic pain caused by autoimmune disorders including lupus and arthritis.

“Two drops of CBD/THC tincture have changed my life,” she tells me. She had previously tried just CBD oil, which is commercially available, but she found that it was only moderately effective.  The CBD rich tincture with a small amount of THC, the psychoactive property that accounts for the marijuana “high,” gave her great results without making her feel stoned. This is because CBD and THC work synergistically. When CBD’s applicable amounts of more than 4% are ingested with THC, CBD reduces THC’s psycho activity that is normally experienced by many people. And when CBD and THC are present in the body, the THC-therapy effect is prolonged by the inhibition of the breakdown of THC by the liver.

“Now I sleep more restfully, and wake up more refreshed with less general pain than I previously experienced,” my friend tells me. “During waking hours, when I know I am going to challenge myself physically, I take CBD in advance and find that my stamina is improved and pain level controlled. If my pain increases because I’ve over extended, two drops of the CBD rich tincture will bring it back to a manageable level.  I am so glad to have this non-addictive, natural option available to me.”

But this does require some “divine intervention” because she can’t obtain this CBD/THC tincture in the state of Missouri, where she lives.  Only 29 states have legalized Medical Marijuana, with Texas, mid-western and southern states remaining holdouts. Ironically, these parts of the country are reeling from the Opioid crisis, and the debilitating effects of addictive pharmaceutical drugs used for nerve disorders, anxiety, and depression and PTSD.

Over two years ago, one of my wife’s best friends from childhood was stricken with advanced stage lung cancer very suddenly.  She started taking high concentrations of CBD with smaller amounts of THC embedded in black tar cartridges. She didn’t survive the cancer, but she left the world in considerable less pain and distress, according to her family members.  I really understood at that point why California’s legalization of medical marijuana in 1996,was called the Compassionate Care Act.

California voters recently passed Prop 64 in November 2016, legalizing the sale and cultivation of recreational marijuana.  The state’s existing marijuana black market is worth about $13.5 billion, while the legal market is expected to earn $5.1 billion in 2018.  This market is rapidly growing and changing, creating a huge new economy in the state.

But the legalization process is complicated and problematic. Because of the Federal drug laws still criminalizing marijuana and classifying it as a Schedule 1 controlled substance, those in the cannabis business, as well as consumers face harassment, regulatory barriers, and uncertainty. For example, marijuana businesses don’t have anywhere to put their profits/cash because banks won’t accept them as customers.  Credit Unions and alternative financial entities (including crypto currencies) are just starting to get involved.  But many businesses in the cannabis industry are cash-only businesses and in the SF Chronicle this week I read a story about three break-ins in houses in Sonoma County, where robbers were looking for stashed cash from cannabis sales.

Small and medium sized cannabis businesses must absorb a myriad of costs related to product development, testing, and manufacturing, as the state government attempts to regulate the industry.  Leib Ostrow and another medical marijuana entrepreneur, Kyle, who has a clinic and laboratory in Southern California, explained how difficult it is going to be to keep big Pharma at bay. With a July deadline on the horizon in California, with many new regulations and requirements, it is challenging time for developers of local plant-based organic products. They will eventually have to compete against mega drug companies who are chomping at the bit to manufacture synthetic marijuana (it’s cheaper) in order to make more money.

“I see what the drug companies give these Seniors,” observed Tanja, the Director of the Memory Care facility where my mom lives. “It’s just horrible.  The drugs don’t help them. It makes me so mad.”  She has watched me struggle to get my mom medical marijuana. “I’d love to join you in your advocacy,” she says. “I really believe that CBD can help them, so much so that I’d love to go out and get this into facilities like this.” 

“UC Irvine has about six important scientific research studies and trials underway,” Leib Ostrow tells me, when I ask why the medical establishment is taking so long to embrace medical marijuana despite multiple studies and trial results that confirm the efficacy of cannabis for a host of diseases and medical conditions. 

The World Health Organization, in a widely published report in 2017, notes that CBD may play a role in treating epilepsy, Alzheimer’s disease, cell damage due to low oxygen (hypoxia) that occurs during stroke, cancer, psychosis, Parkinson’s disease, multiple sclerosis, Huntington’s disease, depression, nausea, rheumatoid arthritis, infection, inflammatory bowel and Crohn’s Disease, cardiovascular disease and diabetic complications.  That’s quite a list.

The findings of this report show that CBD has a low toxicity profile and is not associated with abuse potential.  No one has ever died of a CBD overdose. After reading this report and several others like it, I am struck by how much is actually understand about the power of this drug.  Why is it taking so long to reach people who can benefit from its use?

I want my 88-year-old mom to try taking medical marijuana to see if this will help her anxiety and depression and neurological decline. But initially, I can’t get her geriatric psychiatrist to prescribe her medical marijuana. “There is research that shows that it reduces brain’s amyloid plaques that cause Alzheimer’s disease; and it’s being used to calm Seniors,” I explain. I send her links to articles and studies.

It took over a month to convince this doctor. The psychiatrist wants to simplify my mom’s current drug regimen and take her off two of the four mood altering drugs (developed in the 70’s) she’s on and increase the dosage of one of the remaining two. But so far, this is not helping my mother. I want her to try medical marijuana.

The psychiatrist is attending an annual conference this week; she promises that she will try to find more information about using medical marijuana for the elderly suffering from dementia. But in the meantime she won’t write an order for her Memory Care unit’s medication dispensary to give my mom the CBD enriched tincture I have found for her. I can’t wait to talk to the psychiatrist when she returns.  I will not give up.

I took my mom to see her internal medicine primary doctor for a wellness checkup, and when I asked her about using CBD enriched medical marijuana for elderly patients like my mom, she said she was open to it, but didn’t know enough about it, even though in her words, “it is the future.”   I implored her to learn more about medical cannabis, and told her it was worth her time as a physician to do her research, so she can start prescribing it.   I will not give up.

I’m not a doctor or a pharmacist, but common sense points to trying new treatments to treat old conditions. In addition to medical marijuana, I’m also curious about MDMA-assisted psychotherapy for people who suffer from PTSD/anxiety/depression. The success of clinical drug trials and research studies, along with anecdotal stories I have been collecting convince me that these treatments hold great promise. Still, the doctors my family visits know little to nothing about these new therapies,

Emperor Shen Neng of China, a pharmacologist in 2737 BC, wrote about how cannabis could be used to treat constipation, gout, malaria and poor memory. In an ancient Sanskrit Vedic poem, written in India around 1500 BC, the drug is described as “an herb that releases us from anxiety.” These drugs have been around and used medicinally for a helluva a long time.

I just read Lauren Slater’s book, Blue Dreams, an exploration of the history of psychopharmacology. She writes about the creation and development of psychiatric drugs like Thorazine, Lithium, Prozac, and Effexor (which was made from rocket fuel) and discusses the use of cannabis and psychoactive drugs such as LSD, psilocybin, and MDMA.  She is enthusiastic and hopeful about using these drugs as relief for treating resistant depression, anxiety, bipolar disorder, and PTSD, along with a host of other diseases and conditions.

I also recently read Ayalet Waldman’s book, “A Really Good Day,” about her successful experiment microdosing LSD for her own treatment resistant depression and anxiety. At one point her teenage daughter looks at her in disbelief when her response to some potentially fraught situation is unexpectedly open-minded, calm, and kind, and says, “Wow mom, are you on acid or something?” Waldman has also used MDMA in couple’s therapy, satisfied that it has helped her marriage to a fellow writer and seeker.

A friend of mine, who has a psychiatrist husband, just sent me a press release from the Multidisciplinary Association for Psychedelic Studies (MAPS), which has been conducting a $26.7 million FDA study, now entering it’s 3rd phase, using MDMA and psychotherapy to treat PTSD.  The press release described a successful matching campaign that raised $8 million to complete funding for new clinical trials with 200 -300 more people in 16 locations in the US this summer.

Crazily, as a side note, a matching grant of $4 million came from a crypto currency philanthropist by the name of Pine, who founded the Pineapple Fund. The fund plans to give away $86 million worth of Bitcoin, and has already funded 13 organizations for the tune of $30 million including MAPS, the Water Project which provides clean water to people is sub-Saharan Africa, and the Electronic Frontier Foundation, a digital rights watchdog.  Pine leveraged Bitcoin to raise an additional $4 million in matching individual contributions for this MDMA trial. I don’t know how Pine made his money, but I strongly suspect he is involved in the marijuana industry, and applaud him for funding MAPS and other worthy projects.

The results from their MDMA Phase 2 Trials with 107 participants are excellent:  68% no longer qualified for a diagnosis of PTSD twelve months following treatment. MDMA-assisted psychotherapy now has a FDA granted Breakthrough Therapy Designation (which means that the FDA will work closely with MAPS to progress this treatment through the labyrinthine system.)  MAPS is well on its way to its goal of making MDMA a legal prescribable substance by 2021

How I wish my pharmacist dad was alive so I could talk drugs with him. With its anti-convulsant, anti-emetic, antioxidant, anti-inflammatory, anti-psychotic, and anti-depressant properties, we would violently agree that no one in their right mind should be anti medical marijuana.

But, there is the not so minor problem of the Federal Government, the U.S. Attorney General, Jeff Sessions and the Justice department aggressively enforcing drug laws in states that have decriminalized its production and sales.

Senator Kristen Gillibrand is the co-sponsor of legalization in the Senate to remove marijuana from the Controlled Substance Act and withhold federal funding from states that have racially disproportionate enforcement of cannabis laws. As Gillibrand recently stated, “Legalizing marijuana is a social justice issue and a moral issue that Congress needs to address.” It is also a medical imperative.

Marijuana has gotten a bad rap because of the psychoactive properties of THC. But to be clear, THC is also a strong painkiller and an anti-inflammatory agent that has twice the power of hydrocortisone and 20 times more than that of aspirin. THC is an effective antispasmodic, muscle relaxant, bronchodilator, antioxidant, and neuro-protectant. Pre-clinical trials have also shown that THC reduces vascular endothelia’s growth factor levels in brain cancer cells. With this information in mind, I return to my conclusion that taking CBD rich medical cannabis activated with a small ratio of THC, is the way to go.  It is good medicine and my mom needs it.

I hear from my mom’s psychiatrist, who in an email tells me that she had hurt her back at her conference in Hawaii and needs more time to figure out what to do about my mom and my request.   I write, “Sorry to hear you are having back problems. Have you tried CBD? “

Two days later she responds, “We are just going to have to try it.” She explains that she couldn’t find any of her long time trusted clinicians who actually have much experience with medical marijuana.  “They all said the same thing to me, ‘Get a good mixture and try it bit by bit.”

She agrees to write my mom a prescription/order, and she recommends I contact a local dispensary to get a sublingual CBD product with an 8:1 CBD to THC ratio. But when I go to the dispensary’s website, this business has announced that they are no longer accepting new clients.

Fortunately, there are multiple products in the market and local dispensary and delivery service options. Because my demented mom cannot administer her own medications, I go about trying to find either a spray or tincture that would be easy for the med techs to give her.

I take a trip to Mercy Wellness, a dispensary north of Marin, in Cotati, and use my medical marijuana license to obtain a sublingual spray product from a company called Care by Design, that has the correct 8:1 ratio that the psychiatrist suggested.  Unlike the smaller, more laid back dispensary in Fairfax, this place is very professional and somewhat sterile, with product displayed in glass cases.  There is a spectrum of people waiting in line just like at a pharmacy.

I buy the sublingual spray and bring it to the Memory Care Director, Tanja; I let them know that the psychiatrist will fax them her orders. I am relieved that my mom will receive the medication that I hope will benefit her.

Then I receive an email from the Memory Care Director telling me that they will not administer the medical marijuana to my mother because the product does not comply with Title 22.  Title 22 is a policy and set of procedures that residential care facilities for the elderly in California must comply with to retain their licenses to operate.

I have a long conversation with the Executive Director of the Senior facility.  While he admits to being “a big fan of medical marijuana,” Jody explains that they cannot give a sublingual spray to residents because there is no accurate measurement of the spray.  If we go with a tincture, he explains, it must meet the following requirements: it is prescribed by doctor’s order’s; both the bottle and dropper are calibrated; and that it is labeled with an expiration date.

But here’s the catch. Tincture products on the market in California do not carry an expiration date on their packaging.  Also, I can’t locate a product that uses a calibrated bottle.  I did manage to find a tincture that had a calibrated dropper only. But the expiration date is a showstopper. 

Why, I wonder, aren’t manufacturers using an expiration date?  According to cannabis expert and author Ed Rosenthal, in his book “Beyond Buds,” If stored properly, in refrigerators or freezers, minimizing minute degradation, a well-made tincture can last indefinitely, So, there is no dating that makes scientific sense.

I emailed the manufacturers of the CBDAlive tincture that has the calibrated dropper, in hopes of persuading them to make the tincture product in a calibrated bottle with a calibrated dropper and include an expiration date on the package. 

Leib Ostrow called me from his marijuana farm in Humboldt county.  A Jewish boy and natural storyteller, who “doesn’t like THC much” himself, but who loves the medical benefits of CBD,  Ostrow got started in the cannabis industry about ten years ago.

He told me that he was unaware of the Regulation in Title 22 about the calibrated bottle (it makes no sense to him, either), and then recounted his ordeal of not being able to give his own 90 year-old mother his CBDAlive tincture in her Senior living community in Michigan.   “They almost threw her out when they found the tincture bottle in her apartment,” he laughs.

He explained that sourcing calibrated bottles is an issue; it will be more expensive and he isn’t sure how he would size the market and order the right amount of the bottles for this particular market niche of Seniors, living in state-regulated Assisted Care facilities.   He agrees with me that there’s a tremendous geriatric market waiting to be tapped, and wants to know if I’d be interested in pursuing this business opportunity.

Just as I am about to fall into a state of frustration and despair over my inability to figure out a near term solution, I find a product that could circumvent all the regulations we’re up against.  Kyle, who owns GetZen in Southern California, makes a capsule form of CBD enriched medical marijuana, and the packaging includes an expiration date.  However, I am confused about the CBD to THC ratios in the different products described on his website.

When I speak with Kyle, a former manager of a large pharmacy, who left corporate America to found his cannabis business, he explains that after seeing and working with 300-500 people a month in his clinic, he has formulated his products without utilizing a ratio delineation.  He markets his capsules with the “condition” it best addresses: there’s Tranquility and Serenity and Relax 10, among others.  He sends me a recommended protocol for my mom and I arrange to have the GetZen products delivered to me. The psychiatrist has cooperated and sent her prescription orders over to the Senior facility.

It is six weeks since I started this project, and today at 3:30 p.m., a delivery service is scheduled to bring me the GetZen capsules to give my mother.   I can’t wait to see what happens.

Cousin Ethel

Cousin Ethel, 94, is on her way to the multiverse; she’s in Hospice in Phoenix, where she has lived for the past fifty years. She’s in bed, listening to the news on CNN or MSNBC and getting riled up over the antics of the Regime, because she still cares about this world, her place in it, and what we will leave to our children and their children and their children.

Ethel’s had a rough few weeks, my mom’s sister, Aunt Sydell, the snowbird, reports. She’s been in and out of a horrible rehab facility. Now she’s at a Hospice called Ryan House, which is interesting, as her family name is Rein. “Isn’t that funny?” my 84 year old Aunt, also a Rein noted.  “But she’s finally home; it’s a very nice place, where she is now. She seems peaceful.”

Aunt Sydell phoned me yesterday when she and my Uncle Lou returned from saying goodbye to Ethel, her first cousin.  “She’s not dead, yet,” my aunt clarifies. “I just didn’t want to surprise you.  She’s waiting for Ron to show up.” Ron is Ethel’s only living son and he couldn’t travel due to his own health issues.. Her other son, Rich, was a great guy.  A pediatrician, who specialized in helping abused children, he died at 57, just a year after his father died of Alzheimer’s.   

My Cousin Ethel has been through a lot, but her resilience always astounded me. Like my mother and my aunt, Ethel is a strong, smart, tough lady. But unlike my mother, she maintained a positive attitude about life. She embraced hers with pleasantness, always staying active, sharp of mind, and engaged in her community. She ran the gift shop at the Senior facility where she lived independently the past 7 years. 

In her nineties, Ethel found a boyfriend, volunteered for the Democratic Party, and cherished her friendships with her feisty women friends, all outspoken politically. until their last breaths.  She always made new friends, as people, old and young, loved her dearly.

Sadly, my mom and her fell out, mostly because I don’t think that Ethel understood the extent that my mom suffered from Dementia.  The dynamic between the two of them deteriorated over the years, with both having hurt feelings over small petty things.  Though I think of Ethel as kind-hearted, with a good sense of humor, her relationship with my mom had problematic dynamics.  They competed with each other in some strange ways, maybe a throwback to when they were growing up.

Ethel’s mother died in childbirth with her. She had an abusive father who neglected her; at age 15, she moved in with my mom’s family. She went to New York, got a job, and married a good hearted sailor, Jerry, when she was just out of high school. She worked in the family owned furniture business, and raised her two sons in Waterloo, Iowa.

Ethel and Jerry relocated to the desert when their boys were grown.  When my parents moved to Arizona in the late 80’s, Ethel and Jerry extended themselves and remained part of their social circle for years.  When Jerry got Alzheimer’s, my dad didn’t really understand his behavior, ironically, much in the same way that Ethel didn’t understand my mom’s.     

“When Ron comes, then she’ll go,” I say to my aunt on our call.

“There aren’t many of us left,” she sighs.

“I know.  I’m so sorry, Aunt Sydell.  This must be hard for you.”

Her voice catches, “She wanted someone to stay with her last night because she didn’t want to die alone. Jerry’s cousin went to Ryan House. I just couldn’t deal with it.”

“That’s okay,” I console her. “Ron will be there when she dies, which is what she wants.”

When I hang up with Aunt Sydell, I pause to remember Ethel, hold her in my mind.  The last time I saw her was at brunch at Chompies in Scottsdale four years ago.  Pat and I were with her son, Rich, my Aunt and Uncle, and my mom. We laughed over some crazy good Jewish deli food and talked about Obama. Ethel was excited that a Democrat might actually be elected to the Senate from Phoenix, but that didn’t pan out and instead Arizona got Jeff Flake.  Ethel despised him.

Ethel is of the generation that I am rapidly losing, one of my elders, who has informed my family life.  I loved getting Sydell, my mom, and Ethel talking about their childhoods, growing up in a large extended Jewish family, where people moved fluidly between households in Patterson, New Jersey and Wilkes Barre, Pennsylvania.  

I paid attention to their stories of lows and highs, good times and hard times.  Ordinary, not extraordinary.  Just life.  These three women shared so much over the decades; they attended each other’s weddings, anniversaries, holiday parties.  They stayed in touch, following the progress of children and grandchildren. 

Whenever I visited my parents in Arizona, I would have a meal with Cousin Ethel and Jerry, and then with just Ethel.    I always made it a point to connect with her.

Ethel once told me that one of her biggest regrets was not having the memory of ever seeing her mother.   As she transitions, I imagine Ethel being greeted by her mother. And what a reunion that will be! The thought of their embrace comforts me.  

Maj Jongg Madness

My wife and I joined a Maj game organized by a couple, Peg and April, we have known for twenty years through a lesbian parenting group.  Our kids have all gone off to college, and in our newly found free time we have embraced Bams, Cracks, Dots, Dragons, Winds, and Flowers.  I see these colorful smooth tiles with their specific suits and designs as odd metaphors. Or maybe it’s the whole game.

Deciphering the correct patterns to construct, passing ivory tiles to the right and across, building and picking from walls, certainly wakes up our brains; we struggle humbly to find our hands, learning the complex rules and rituals of play from our coaches Peg and April.

This isn’t my first exposure to this ancient Chinese game, popularized in America in the 1920’s and embraced by Jewish women, who as I’d expect from Jewish women, felt compelled to make up their own rules and form an official organization, the National Maj Jongg League.  My mom played Maj and I can remember the sound of the tiles clicking and clacking on the card table on nights when the ladies played at our house.

I never learned to play Maj from my mother, who has lost her ability to play the game. This was one of the first signs of her dementia.  She couldn’t make a Maj hand, and unfortunately the group of women she played with weekly in Scottsdale treated her with more cruelty than kindness, chiding her for not keeping up.  My mom, never a gracious loser, gave up and stopped ordering her yearly Maj card from the League.

“Flowers are the easiest to get,” my Maj Coach Peg, who wears a pair of socks decorated with Maj tiles, whispers as I identify a hand that I want to play that includes a set of Flowers.  And a few minutes later, my 84-year old Aunt Sydell, who on her annual visit to see her sister, my mom, is sitting in on our game, says increduously, “Why are there so many fucking flowers?”

Expert player that she is, she’s spotted an irregularity.  Instead of 8 flower tiles, we are playing with 16; my Aunt explains that although 16 Flower tiles come with the Maj Jong set, the rules require that you take half away and play with just 8.  8 fucking Flowers.

Our skeptical friends/coaches Google this rule and discover that she is correct; over time, the number of Flowers used has in fact decreased. This complicated game is in flux from year to year, as dictated by the all powerful National Maj Jong League; the card with the published patterns for winning hands changes to keep things interesting.

“The League is coming for you,” I warn our patient friends/coaches, who have learned the game from Peg’s New York based mother, who by the way is neither Jewish nor Chinese. But she is a New Yorker who has infected her daughter with the Maj bug.  They take out the extra tiles somewhat reluctantly.

Later we get into a friendly discussion about concealed hands.  Our friends disregard the “C” that appears at the end of certain hands on the card; in play this translates to drawing all tiles from the Wall, with the exception of the 14^th tile.  You can’t call or take tiles that are discarded from other players when you are going for Maj Jongg with a concealed hand.  

“We aren’t ready for this, yet,” April explains to Aunt Sydell. “We’re still learning.  Come back maybe in twenty years we’ll be farther along. In another few years we might even start playing for money.” Aunt Sydell laughs and promises not to turn us in to the League. She’ll be back to monitor our progress.

I am impressed by the complexities of this game; Aunt Sydell has been playing for over fifty years and it shows.   She knows the NML 2017 card by heart; she is aware of which tiles have been played and can even accurately predict what hand everyone at the table is going for as the game progresses. Her memory at 84 blows us all away.   My mother on the other hand, doesn’t remember that her sister even came to visit the day after my Aunt flies back to Scottsdale.  Bam, Crack, goes my heart.

“We can have the next game at our house,” announces my wife, as we conclude our recent game. Then she frets that we don’t have snack tables.  There is no room on the main table to keep noshes and drinks, thus the need for snack tables.  I expect I’ll see some oversized packages arriving in the next few days from Amazon.  Play on.

My Mad Pharmacy

As my mother’s dementia worsens, she is increasingly anxious and restless, unsure of what to do with herself. In her Memory Care unit throughout the day, residents participate in activities including balloon volleyball, masterpiece coloring, bingo, and sing alongs. They watch old movies and interact with therapy dogs.  

Getting my mother to participate at her program is hit and miss – but mostly miss.  Never much of a social person, my mom spent little time in small groups; she preferred reading novels and playing bridge, solitaire, or maj jong on her computer for hours, but she has lost the cognitive ability to do these things. She went along for a whirlwind of social engagements with my hyper-extroverted father when he was alive, but often spent her free time alone.

She’ll come out of her studio apartment, claiming that she needs help, but cannot articulate what she wants. When the staff suggests that she partake in an activity, she refuses, returning to her room, only to re-emerge ten minutes later with the same non-specific request for help.

I’ve been wracking my brain with how to engage her.  My mother owned and managed her own pharmacy for thirty years, and prior to that she helped out at my father’s pharmacy from the time they were married.  She had a strong work ethic and valued her skills as a small business person.  I started thinking about what “work” we could give my mother as an activity.  Initially, I came up with sorting beads by colors, and spoke to Tanya, the Memory Care director about setting my mom up.

Tanya gave her beads to sort and for a few times she did this, but then lost interest. Tanya brought in a basket of laundry for my mom to fold, but never much of a domestic type, my mom shunned this activity, as well.

And then I had my big idea. She could fill prescriptions.  Everyone in my family counted pills behind the pharmacy counter at one time or another in our lives. I envisioned her sorting and counting pills into vials.

At my neighborhood CVS, I bought candy – white and green Tic Tacs, white speckled Memento mints, gum pellets, and Skittles -- anything that vaguely resembled drugs. Then I stood in the Consultation line at the Pharmacy counter, waiting to ask an employee to sell me some empty pill vials and labels.

I looked at the stressed out woman pharmacist, and a officious, unsmiling pharmacy tech worker, and did not feel confident that they would help me out.  Then I spotted another pharmacy tech, a young man who was busy entering something into a computer. I asked him if he could speak with me for a minute. 

“Hi. I have a slightly unusual request,” I explained.  “I’d like some empty vials and some pharmacy labels.  My mom is 88 and she has dementia.  She used to own a pharmacy, and I was thinking that she might enjoy doing some work, preparing prescriptions.  They’d be fake, of course…”

He immediately nodded and said, “Yes, I get it.  My Uncle was a pharmacist and he had dementia, too.  We used M&Ms.“ 

“I just bought a big bag of Skittles; thanks so much,” I told him as he filled an empty bag with two dozen vials of all sizes, and gave me several pages of empty drug labels.  He didn’t charge me a cent. 

I stopped at The Container Store and bought some baskets to store the supply bottles and empty vials.

At home on the dining room table, I worked on setting up my mad pharmacy. I affixed labels to the vials, making up my own drug names and instructions.  The drugs included: Kindosec, Lovexxx, Funesium, Harmonesta, Sanfroidox, Pacifix,and  Nophonia. I particularly liked Nophonia (500 mg. Take by mouth  many times daily, preferably with snacks), a perfect pill for my mother, since she phones me more than a dozen times a day and I’ve taken to blocking her calls so that I don’t lose my mind.

When I told my wife about my big idea she was skeptical.  She didn’t think my mom would fall for candy pills, but I disagreed.  I talked to the Tanya at Memory Care, and explained what I had in mind for this activity. 

Tanya was game, and I dropped off the Pharmacy supplies.  The next day I received this email message from Tanya:

Hi Sue,

Shirley sorted medications this afternoon for over an hour. I told her how much I appreciated her help, told her we were short on med-techs, and asked if she could help us with this on a daily basis. It was funny because several people thought they were real meds. Maybe we can work up to twice a day if she’s up for it. Thanks for such a brilliant idea! I’m annoyed with myself because I didn’t think of it first!

Have a good weekend,


Tanya

Today, I asked my mom how her day went yesterday.  “What did you do?”

“Not much,” she answered.

“Did you help Tanya out,” I probed.  “She told me that you assisted them preparing medication for the residents.  How was that?”

“Oh yes, I did that,” my mom remembered.  “But they didn’t pay me.”

“Hum…well maybe they will pay you with good will,” I suggested.

She looked at me slightly confused. “It’s great that you helped them out,”I explained.  “I’m sure that they really appreciate your work.”

She smiled. But knowing my mom as I do, I’m certain she is still waiting for her paycheck.