In her quiet, sunny, second-floor bedroom in Orono, Dair Gillespie rests all day long in an adjustable medical bed, no longer able to endure the rigors of getting up for meals, bathing or even a change of scene. At 77, Gillespie, a retired professor of sociology, suffers from advanced Alzheimer’s disease, compounded by a significant stroke in 2013 and a broken hip in 2016. The combination has left her completely helpless, unable to control her fragile body or communicate her wispy thoughts. She is wholly dependent on a cadre of professional caregivers and the loving ministrations of her spouse, Ann Leffler, also retired from an academic career in sociology.
Frail though she is, Gillespie has a small but important role to play as she nears the end of her life. As one of just a few people in Maine certified to use medically prescribed marijuana to treat the symptoms of Alzheimer’s, she is, potentially, helping to pave the way for others to follow suit.
Each morning at 10:30, Leffler, who is 70, squeezes a few green drops of cannabis tincture into Gillespie’s mouth, doing her best to deposit it under her tongue.
“It’s best if she can absorb it sublingually, but she usually just swallows it,” she remarked, administering the dose during a recent visit from the Bangor Daily News. Gillespie accepted the tincture calmly, holding it for several seconds before swallowing with no sign of distaste. The tincture in the bottle smelled mild and fresh.
Sometimes, the morning dose is all Gillespie needs. But often, if she’s getting restless or worked up, Leffler will give her another, smaller dose mid-afternoon. It takes about a half hour for the subtle effects to show up — a more relaxed facial expression, a loosening of her clenched hands, a readier ability to focus on a familiar face or hold a cup.
“On cannabis, she’s very, very different,” Leffler said, screwing the dropper-top back on the one-ounce bottle. The drug has drastically reduced Gillespie’s overall agitation and combativeness. It’s made it easier for her to eat and sleep, and easier for caregivers to tend to her many needs. And, far from making her sleepy or “out of it,” Leffler said, cannabis has restored a small bit of awareness and responsiveness to her dear one.
“She is much less anxious, much less fearful,” Leffler said. “She’s much more ‘there’ — she’ll laugh, she’ll smile, sometimes she’ll say a word or two that can be understood.”
Although Gillespie can no longer express her own will, Leffler is confident that the woman she has known intimately since 1970 — they met as graduate students at the University of California at Berkeley and were married in Maine in 2015 — would be very open to pioneering cannabis as a promising medical treatment. And she would be quick to share her experience with others who are seeking relief from the aggression, anxiety, depression, insomnia, hallucinations and other distressing effects of the fatal disease of Alzheimer’s.
“If she were cognizant, she would be very proud to share her story,” Leffler said.
Gillespie, who was diagnosed with Alzheimer’s about three years ago, has been using cannabis tincture for about a year, after being certified through an area hospice agency. At the time, Leffler said, her spouse’s health had taken a sudden downturn, perhaps related to a series of smaller strokes that left her nearly comatose.
“At one point we thought she only had 72 hours to live,” she recalled.
Gillespie eventually recovered from her lethargic state, but assumed a heightened level of agitation and confusion. She became increasingly fearful and combative with her caregivers.
“Dair was taking all the usual, very heavy-duty drugs for Alzheimer’s, and she was taking other drugs for the side effects of those drugs,” Leffler said. She thinks the psychoactive medications contributed to Gillespie’s physical and cognitive decline.
“She was starting to have psychotic meltdowns,” she said. “Things were getting very difficult.”
Cautiously, Leffler approached the hospice nurse with the idea of trying cannabis to ease Gillespie’s distressing symptoms. The nurse, she said, was familiar with using prescribed cannabis with cancer patients at the end of life, but not with Alzheimer’s disease. But, like cancer, Alzheimer’s is on the list of 17 medical conditions that can qualify a patient for medical marijuana in Maine.
“She looked into it and said, ‘We can do this if you want to,’” Leffler said.
The cannabis landscape in Maine
In Maine, it’s been legal to use marijuana for specific medical conditions since 1999. Initially, the state law only allowed physician-certified patients to grow their own supply or connect with licenced growers, but in 2012, eight regulated dispensaries opened across the state, enabling patients or their licensed caregivers to purchase the drug in limited amounts and in various ingestible forms.
While 15 other states have also legalized the use of marijuana for medical purposes, it remains illegal at the federal level and is a source of controversy for some prescribing physicians and health organizations. Marijuana is not approved by the Food and Drug Administration, and health insurance plans, including Medicare and Medicaid, will not pay for it.
The cost of different cannabis products varies widely. At one dispensary, a one-ounce bottle of tincture costs about $70 and may last for several weeks, depending on the dose. A tin of cannabis salve for rubbing on sore muscles and improving circulation — without causing any psychoactive response — runs about $18.
Dr. Clifford Singer, a geriatric psychiatrist in Bangor, said cannabis appears to have a therapeutic effect for some people with Alzheimer’s disease. For those whose disease has progressed to include early symptoms such as mild anxiety, confusion and sleep loss, there can be a measurable benefit, he said.
And for people like Dair Gillespie, whose late-stage symptoms cause intense suffering?
“Comfort becomes more important than function,” he said. “I think that at that stage you try everything to help stop the suffering.”
The Alzheimer’s Association takes no position of the use of cannabis to ameliorate the symptoms of the disease. Because there has been little research into the drug’s safety or effectiveness, especially its potential interaction with other commonly prescribed Alzheimer’s medications, the organization is hands-off on the matter, said Laurie Trenholm, executive director of the state chapter.
“It’s a very personal thing people can choose to do,” she said. “But as an organization, we have to err on the side of caution.” Anyone contemplating using marijuana in any form for symptoms of Alzheimer’s should consult a physician first, she said.
Finding a physician to certify a patient for medical marijuana can be a challenge, according to Dr. James Van Kirk, Director of Supportive Care at Eastern Maine Medical Center. Between a lack of solid research, lingering social stigma and the drug’s iffy legal status, many physicians and health organizations, including Eastern Maine Healthcare Systems, he said, simply won’t get involved in the certification process, even in end-of-life situations.
But Van Kirk, who is also the board president of the Maine Hospice Council, said many primary care doctors will refer receptive patients to a provider willing to certify them for medical marijuana. And while research is still lagging, he’s convinced marijuana confers a great deal of relief for patients dealing with chronic pain, anxiety, anorexia, agitation and other conditions associated with end of life. He believes marijuana is widely used in the hospice setting for cancer and other conditions, if not yet for Alzheimer’s.
“I’ve been recommending it ever since it became medically available,” he said.
Many people, especially older people, are reluctant to turn to marijuana for relief, according to Patricia Rosi, CEO of the Wellness Connection of Maine, which operates four of Maine’s eight regulated dispensaries. That reluctance is often related to longstanding social stigma. Others struggle with the drug’s legal status or with fearful misconceptions about its effects.
“They really don’t know what to expect,” she said.
Other patients, including some baby boomers who used the drug recreationally in the past, are completely open to its therapeutic possibilities, she said.
Rosi said only four Wellness Connection clients in Maine currently are certified for Alzheimer’s disease. Much more common are diagnoses of cancer, PTSD and chronic pain. But, she said, as better research emerges, she expects more Alzheimer’s patients, caregivers and physicians will turn to cannabis treatment. Already, she said, her company is designing a study in partnership with the University of New England in Biddeford to better quantify the ability of cannabis to improve the management of chronic conditions like Alzheimer’s and end-of-life care.
Research is key
For Ann Leffler, research is key to establishing cannabis as a mainstream therapeutic tool. Her own experience, and Gillespie’s, may add to the store of anecdotal evidence, but as career sociologists, scientists and educators, she said, they both recognize the power of formal laboratory studies, randomized clinical trials and peer-reviewed reports.
Until such research clearly demonstrates the efficacy of cannabis in treating symptoms of Alzheimer’s and other conditions, she said, it will continue to suffer from social stigma and a lack of clinical acceptance. Already, she’s been contacted by UNE regarding the upcoming study, and she looks forward to contributing what she can.
In the meanwhile, Leffler is deeply grateful for the day-to-day relief of her spouse’s suffering. The complex cocktail of Alzheimer’s medications has been discontinued, replaced almost entirely by the daily dosing of cannabis tincture and some over-the-counter pain relievers. Gillespie accepts the personal care she needs and generally rests comfortably through her days and nights in the peace of the quiet house.
Gillespie still hits a rough patch from time to time. “Who wouldn’t in her state? She’s bedridden, she’s catheterized, she can’t even turn over in bed by herself,” Lessler said. “She has the right to be agitated once in awhile.”
But when the agitation escalates, she added, there’s relief and reassurance to be found in the small vial of green tincture at the bedside.