I never expected that my sweet elderly mother would be caught in the crosshairs of the latest war on drugs.
From the White House to the CDC, pain relief in the form of prescription opioids is suddenly Public Enemy No. 1.
The new guidelines, designed to reduce the rate of prescription opioid abuse, were supposed to exempt those undergoing cancer treatment and for those in hospice.
Those guidelines failed my mother.
For the record, my mother was not a wimp, a hypochondriac, or a drug abuser.
This was the woman who, night after night for three years, mothered the unruly child that my father with dementia had become. She bathed him, dressed him, and kept track of him all while trying to avoid his swinging fist. After he was placed in a memory care center, my mother rode a Greyhound bus an hour-and-a-half each way to visit my father weekly. After one such grueling journey, she fell off the toilet in the middle of the night and broke her shoulder. My mother crawled on her good arm to the bedroom to retrieve her cellphone to call 911. With her injured arm in a sling, she got right back on that bus as soon as the doctor cleared her to travel.
My mother was diagnosed with stage III colon cancer and survived an emergency colostomy, but took months in rehab to deal with blood clots and other issues. Her prescription for low-dose hydrocodone was part of her post-discharge medication plan. My mother only took it as needed, and used over-the-counter pain relief medication in lieu of it when possible. The only side effect my mother experienced with her long-term use of opioids was constipation, which is a common complaint and can be managed.
When my mother began to experience abdominal issues two years later as the cancer had likely returned, it was accompanied by pain that at first was nagging but quickly escalated to excruciating. OTC medication was clearly not going to relieve this kind of pain.
My mother was warned by her doctor’s office about the new Medicare rules for opioid prescriptions. She would need to make a doctor’s appointment each time she needed to refill her hydrocodone prescription and she would be required to pick up the prescription in person at the pharmacy, instead of home delivery. These may seem like reasonable restrictions, but for my mother, it was a burden. While she was able to live independently and was mentally alert, she had no car and relied on the limited public transportation in her small town. The town has very few doctors, meaning it could take weeks to schedule an appointment with her primary care physician. In the winter, bad weather shut down transportation options.
My mother did not abuse her hydrocodone prescription, but took the recommended amount, which still did not effectively manage her pain. I talked to my mother daily on the phone and she was not impaired. With the new rules in place, my mother would ration her medication until she was able to see the doctor. This can be dangerous, leading to breakthrough pain or, on the flip side, increasing the risk of overdosing, if one forgets how much they’ve taken.
Over the next few months, my mother’s pain grew considerably, but her prescription was kept the same and the limits on refills remained. Her appetite decreased, she had trouble sleeping, and completing simple tasks around the house became physically exhausting.
I signed Mom up for home health care as her quality of life was quickly fading. Since my mother was now too weak to consider any cancer treatment options, the main priority for the home health care team was to get my mother’s pain managed. But they faced the same new regulations and found the busy doctor just as hard to get a hold of as my mother did. Even with a registered nurse making home visits, my mother was still required to travel to the doctor’s office and the pharmacy in order to obtain her pain medication.
Just a few months before her death, my mother’s doctor went on vacation for a week, and my mother ran out of hydrocodone. My mother’s cries of pain filled my ears daily. Home health said there was nothing they could do, and I called the doctor’s office, asking if another physician could see my mother, but no one else was available. My mother was told to take Aleve.
For intractable cancer pain? Are you kidding me?
It was a further battle to get my mother enrolled in hospice, where she only lasted a few weeks. For the last two weeks of her life, she was finally granted the morphine that helped control her pain and allowed her to rest. The irony? We ended up with three unopened bottles of morphine after my mother died, and those had to be disposed of due to government regulations. The nurse said that it was a shame, because morphine can be difficult to acquire in rural areas.
I hope all of this government fanfare around prescription opioids pays off, because my mother suffered dearly for it. I fear that other innocent people are suffering silently while smug government officials pat themselves on the back.
My mother came from a generation that did not question the authority of doctors. She would rather suffer than be seen as a nuisance. As a long-distance caregiver, I hounded the doctor and home health agency by phone but felt like I was constantly running into a wall of bureaucratic indifference. I feel that I failed my mother in this last act of compassion that I could have provided her as her caregiver. I live with that feeling of failure each and every day.
While I fully support the creation of a non-addictive pain medication and alternative pain treatments, people are suffering right now, and managing their pain should not be ignored while the government searches for the miracle painkiller. Of course people should be made fully aware of the serious side effects and addiction risk associated with opioids, but ultimately, individuals should be allowed to make an informed choice with their doctor about what’s best for them.
Joy Johnston is an Atlanta-based digital journalist who began The Memories Project blog in 2012 after her father died of Alzheimer’s. Her essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.