How Cannabis Eased Our Family’s Decade-long Journey Through Mom’s Alzheimer’s Disease
By Chela Fiorini-Coennen
Although it’s been a devastating year for everyone, it’s fair to say that people living in senior care homes with a dementing illness have experienced the COVID-19 pandemic more intensely than the rest of us. Beyond the fact that people living with dementia are at higher risk for coronavirus for several reasons, the isolation caused by public health measures and rules designed to protect them from the virus have led to rapid decline in many, as well as “Death by COVID Isolation”. Isolation itself is a risk factor for dementia, and is known to worsen the symptoms. Our loved ones are isolated for their protection, but how do we explain that to one who can’t remember.
There were times in her journey when my mom was in medical isolation where I couldn’t see her for a few days to a couple weeks, and even that short period was tough. After her long journey, my mom passed before the pandemic, and I can only imagine how hard it’s been for those of you who haven’t been allowed to support your loved one in assisted living the way you once did. We are all being asked to make enormous sacrifices for the greater good. And hopefully 2021 will bring better days and deeper connection.
In our first Farmacann Newsletter for 2021, we want to give you our backstory and explain why my husband and I became passionate advocates for cannabis therapeutics.
Cannabis medicine has been used by humans for centuries, and long before racist policy and corporate interests created “Reefer Madness” spinning this healing herb into the Devil’s Lettuce throughout the 20th Century. Although they are very hard to do because of the highly restrictive drug scheduling of cannabis, there are studies which indicate that medical cannabis could be helpful in easing, isolation related depression anxiety and fear. Some researchers believe that “…THC and other cannabinoids may have an anxiolytic role in central mechanisms of fear behaviors…” and that cannabis “modulates subjective anxiety (Sethi et al., 1986; Wachtel et al., 2002; D’Souza et al., 2004).”
Cannabis medicine really helped ease my mother’s anxiety and aggression throughout her Alzheimer’s dementia journey. I know personally that CBD and cannabis medicine have calmed my anxiety, caregiver stress, and helped ease my pain from IBD and migraines, and a 1:1 ratio of CBD:THC helps prevent my night sweats from symptoms of menopause. Of course, I’m only one person. But for my mom, and our family, cannabis became essential long before the pandemic.
Our journey began suddenly in 2010
Sure, my husband and I noticed she was forgetting stuff, but nothing too weird. “Wait ‘til you get old!” she’d say. Sure, she hadn’t been cooking much, “I’ve cooked for people all my life, I’m done!” She was getting lost driving, but that wasn’t so unusual, she always had a bad sense of direction. Finally after a fall, at the hospital the doctor said flatly, “Ms. Seagram, you have dementia.” In another room, the Social Worker told us, “You know she can’t live alone, right?” And just like that, the whole world turned upside down.
But we’re “lucky,” they say, a diagnosis of dementia rips most families apart, and somehow it’s brought us closer together. Dementia is still a great mystery to science. They know little more today than they did 115 years ago when Dr. Alzheimer named the most common type. That’s probably why it’s the most feared diagnosis. Dementia affects more women than men, more people of color than whites.
That night, near the hospital, we were just a couple of film crew workers sitting in a red vinyl booth at the world-famous Formosa Cafe. Colorful twinkling Christmas lights festooning the walls, surrounded by an audience of vintage, autographed black-and-white headshots: Brando, Bogart, Marilynn, Elvis all looking on as we tossed back martini’s crying in our mac and cheese about how our fun-loving, child-free, carefree lifestyle had suddenly been destroyed: Mom has Alzheimer’s Disease.
We were totally clueless, self-centered and lacked practical skills. Though I’ve worked props on medical shows, I’m not a doctor, nurse or medical professional! So we started to study: read all the books on Alzheimer’s and related dementias, did loads of internet research, went to support groups and every doctor visit with research and questions. We were still clueless, but so were the doctors. They know little more than Dr. Alzheimer knew in 1906. The leading Alzheimer’s organizations have nearly given up on a cure and are now focused on prevention and promoting brain health as the solution to these incredibly complex diseases. But it’s hard to prevent a disease the cause of which we don’t fully understand and what research there is points to a massive overhaul of our diet/nutrition, exercise regimen, sleep hygiene, and stress management. We don’t know the exact cause, and there’s no pill to fix it.
Triage
We cared for my mom at home the first four years. Initially, it was complete triage. Constantly reacting to the major changes in all our lives. Including having to live with my narcissist mother who had been intent on breaking us up since before our first date. As the disease progressed, and our resources were drained, we had to move mom into a facility despite our absurd preference to keep her with us at home. She lived there for five years. The last two, spent crumpled and contracted, tortured and betrayed by her broken brain, trapped in her body at the mercy of a society that discards its elderly. Especially after she became non-verbal in the facility, she was frequently ignored, force fed, left wet for hours – until I was off work, and could get there to fix it. Every day. For years. It was a nightmare that only her passing could alleviate. After a nearly decade-long odyssey through dementia, my mom died February 1st, 2019.
When we began this journey in 2010 we only knew “Alzheimer’s” was a terminal disease that was bad news for your memory. Any form of dementia is no joke for all concerned. The irony is that the only way to get through it is to laugh and find the positive aspects out of the contrast, after all your dreams have been crushed – but that took us quite some time to figure out. Little did we know the answer was in our stash box all along.
“It’s bad for her memory!”
My mom had smoked three packs of cigarettes a day from 13-50 and she also smoked small amounts of cannabis medicinally for severe pain from gallstones for nearly 40 years at bedtime. When she was diagnosed with dementia the docs were very much against her using cannabis at all. In fact, they seemed to blame it on her condition. “She can’t have Marijuana, it’s bad for her memory!” Her neurologist held us hostage for Namenda and said she couldn’t have the prescription if she used cannabis, because he said, “marijuana is a drug of abuse, it has no medical efficacy.” And they put her on five new powerful medicines, so we kept cannabis away from her for most of the first year. Primarily because we hadn’t researched the drug-drug interactions and thought her doctors must know best, this is their specialty.
For a while, it was hard to tell what was a symptom of the disease or side-effects from all the new prescription medication. My mom had been rather hard to deal with even before she got sick. They prescribed Ativan for her relentless anxiety and agitation which worked great the first day. But she had an adverse reaction the day after when she totally freaked out and called me terrible names, wildly accusing me of trying to kill her. They prescribed Zyprexa, an antipsychotic, for her severe aggression – they called it “dementia-related psychosis”. There’s a notice on the bottle that has a black box around it that reads:
“WARNING: Increased Mortality in Elderly Patients With Dementia-Related Psychosis. Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death…not approved for the treatment of patients with dementia-related psychosis.” But Medicare paid for it. She was much nicer on the antipsychotic for a few days, but then, back to the name-calling freak outs.
They prescribed Seroquel, a different antipsychotic with the same warning, to replace the Zyprexa. They prescribed Lexapro for depression, because she was terribly depressed that she was losing her mind, her freedom, herself. They prescribed Depakote, a powerful anti-seizure medication that also has a black box warning, to relieve mom’s restlessness, and the cyclical, constant questions. She never stopped asking the same questions over and over, and she developed a tremor, an ironic side effect of the anti-seizure medication. They prescribed Trazadone to help mom’s insomnia. And of course, they prescribed Aricept and Namenda to try to slow down the disease process. All these drugs have serious side effect warnings that include kidney and liver damage, organ failure, stroke and sudden death. Which wouldn’t be so bad, if they actually worked and provided a decent quality of life.
Mom fell frequently on the meds, taken as prescribed, on their lowest doses – some of the lesser side-effects of these drugs include nervousness, restlessness and inability to sit still, particularly troublesome when there’s also weakness, loss of balance, and dizziness. She experienced all those side effects and worse, the meds didn’t do anything for the symptoms we were trying to treat. The falls forced me to take time off work, which is when we finally wised up. Mom refused to get out of bed for three weeks. Somehow she remembered she had fallen several times and was terrified to fall again. Her new doctor was calling it “failure to thrive.” We thought for sure, this was it.
In her room, her TV on, I was researching side-effects and drug-drug interactions. Mom turns to me and says, “I want a joint.” I call her new doctor and she says, “Look, she won’t get out of bed, give her anything she wants.” So I rolled us a joint and we smoked it together. Before we finish Mom says, “Let’s go to the living room and watch TV!” This began the discovery.
Our Research Begins
I learned the U.S. Department of Health has held patent #6630507B1 on cannabis since 1998 as “…neuroprotectants, for example in limiting neurological damage following ischemic insults, such as stroke and trauma, or in the treatment of neurodegenerative diseases, such as Alzheimer’s disease…” And that led us to discovering the mountain of evidence that cannabis actually helps ease the symptoms and slow the disease process of dementia.
A simple Pub-Med search reveals study after study after study that cannabis eases the terrible symptoms of dementia better than anything else available on the market. A documentary called “The Scientist” shows that every nursing home in Israel uses cannabis medicine for their elderly. Mainstream media sources show that there are a few facilities in Northern California and New York state that are also currently using full-spectrum cannabis oil with people living with dementia. 33 State Departments of Health list Alzheimer’s Disease or other neurodegenerative diseases on their qualifying conditions for medical cannabis. How is it that a film worker turned family caregiver can uncover this life-changing information, but doctors seem willfully ignorant?
We stopped going to the doctors who had advised so strongly against cannabis and prescribed all the deadly, ineffective, off-label black-box drugs. They were obviously not aware of the most current science, nor did they seem interested. This was tricky because we didn’t have many assets to speak of and mom was on Medicare and Medicaid. But her new, fresh out of medical school, vegan doctor was really open-minded. I guess she believed in the power of plants, because she certainly didn’t learn about cannabis in her formal training.
How Cannabis Helped Mom
We weaned off five harsh prescription black-box drugs that were covered by insurance to find we only needed one plant-based medicine that we had to pay for out-of-pocket. It was obvious that Mom had greater focus and interaction when she was medicated with cannabis: she laughed, smiled and communicated with us, she was no longer agitated or aggressive. Cannabis helped mom have a carefree attitude about losing her mind.
Cannabis oil helped my mom so much that I made sure that she had it every time I saw her. Quietly, however, since the Nursing facility told us they would throw us out for using cannabis, a “Schedule One” drug. The first facility mom was in actually DID throw her out. After drug testing her for cannabis, and telling me to “knock it off” or they would ask us to leave. They kicked mom out after she drew the foul when another woman pushed her from behind and mom spun around and slapped her in the face in retaliation – my mom was the leader of the girls gang growing up in Brooklyn. The facility was not medicating her agitation and aggression at all and wouldn’t allow me to medicate her either…what did they expect?
Cannabis helped ease my mom’s symptoms from the moment we started using it, until her last breath – a couple drops of full spectrum CBD oil every hour eased her intense death rattle, and made it smooth like the sound of the oceans ebb and flow.
Schedule I of Drugs
Perhaps the reason there is no widely known effective treatment for dementia, nor it’s terrible symptoms, is because of the Controlled Substances Act Schedule I of Drugs? Maybe, at least part of the answer to complex brain issues is in complex plant medicine. Maybe all plants should be allowed to be studied before the cost of caring for people living with dementia surpasses the GDP.
In January 2019, The World Health Organization called for cannabis to be rescheduled internationally & admitted that it was erroneously put on the CSA in 1971 – that they have been wrong for decades. At the end of 2020 the WHO finally rescheduled cannabis and officially classified it as a less dangerous drug, hopefully paving the way for more research and greater access. Cannabis has been proven to help all of the difficult symptoms of dementia.
Western Medicine is failing millions of people living with dementia and has not come up with anything promising in more than 100 years. We don’t have to be restricted by draconian ideas on plant-medicine any longer. However, because cannabis remains on the Controlled Substances Act Schedule I of Drugs, doctors are uneducated and afraid of losing their licensing, and researchers have a very hard time funding studies and getting the plant material from the one and only government approved grower in Mississippi (NIDA). Public pressure can change this. We could ease the suffering for millions of people living with dementia today, with education and policy change.
If the government studies under prohibition taught us anything, it’s that this plant has low risk of harm – it certainly does not have a black-box warning. With no end in sight for Alzheimer’s Disease and related dementias, we must expand where we search for solutions to one of the greatest threats to human health and our national and global economy. More studies with real-world cannabis products need to be done.
After all the devastating losses from the COVID-19 pandemic this year, we must drop old racist policies that have held back cannabis research and prevented people from realizing the benefits from this plant that acts on so many different pathways simultaneously. Cannabis could even potentially help fight COVID-19 complications. We need to be able to freely study the potential of this vital plant. Call and write to all your elected officials and tell them to open up cannabis research, implement education and normalize the cannabis industry across all 50 states.
We must be bold. If not now, when?
#CannabisHelpsDementia
Chela Fiorini-Coennen
Chela and her husband Dave, working with Farmacann doing Education and Outreach, are Family Caregivers Turned Advocates who were so inspired by her mother’s journey they wrote a movie, launched the “Cannabis Helps Dementia” podcast , and started AlzNotes.com Crash Course for Caregivers under the umbrella of Coennen Creative: Wellness Marketing Solutions. It’s their mission to improve the lives of those in relationship with dementia through care gap training and plant-based education. They specialize in private Zoom/phone coaching as well as provide a Community Intensive featuring the Virtual Dementia Tour all over Southern California, until COVID-19 put in person learning on hold. You can find them on all the socials @AlzNotes