by Johanna Trimble
Our Mom was happy in her independent living apartment and involved in her community. But in 2003, at the age of 86, she was admitted to the Health Centre. The day before she’d asked her daughter to take her to the ER: “I was weak and dizzy and I knew I couldn’t stand without passing out”. She had been suffering from the flu but did not have pneumonia. She was dehydrated, had low sodium, received intravenous fluids and was released. Still not feeling well, her doctor suggested a few days recuperation in the attached Health Centre then a return to her apartment.
The prescribing cascade
However, after admission to the Health Centre, surprisingly her cognitive status declined precipitously and she was not released back to her apartment. Two different SSRI antidepressants had been given without family consultation. The first one gave her hallucinations. Instead of depression, we believed she was rightfully mourning her loss: her apartment, independence, privacy and friends – her life.
She began experiencing agitation, delusions, and inability to tell dreams from reality. She was “sleeping” and difficult to rouse even during the day. It didn’t seem like a normal nap. She developed unexplainable, repetitive movements of her arm, sudden sweating, episodes of rapid heartbeat and lack of coordination. This was not our Mom!
Now on nine drugs, the staff said, “that’s not very many”! We suspected, after watching and listening carefully to her symptoms when she was lucid and able to talk with us, that drugs could be the problem. We discovered that she likely was experiencing “serotonin syndrome” caused by drug interactions.
Deprescribing
Our family met to coordinate our approach. Research in hand, we met with medical staff with the goal of a directed “drug holiday”. We were successful. The psychiatrist for the Centre had recently visited and prescribed donepezil for “vascular dementia”. We declined the drug, which had possible adverse effects and only a small, statistical benefit and no guarantee of clinical effect. By this time, we had asked the medical staff not to prescribe anything we had not approved.
The “drug holiday” soon brought our Mom back cognitively! Completely! Her mental status returned to normal, she improved physically and could get up. She improved to the point where we would take her in a fold‐up wheelchair and drive to her favourite restaurant for oysters and white wine. This gave great joy to all of us. She had 3 years more of a good life though to our sorrow was never able to return to her apartment – or even to the assisted living floor. She had been bedridden too long and lost function to the point that she could not leave. This is a great danger for elders and why drug interactions and adverse events have to be dealt with quickly. It can impact on how they live the rest of their lives.
Four years later, our Mom died (October 2008). She passed on her down‐to earth‐philosophy of life: “religion is really about how you treat other people”. Her last weeks were remarkable and moving; she was intent on passing on to her family what she’d learned about life and how much she loved us. We would never have received this last gift from her if she had died in her earlier drug-induced, delusional state. She would have died not even recognizing us.
Spending long hours with our Mom allowed us to observe, ask questions and listen. We compared her symptoms with adverse effects of drugs she was on. Doctors often see adverse effects of drugs as another “condition” and more drugs ensue -- the “prescribing cascade”. Our love and respect meant we left no stone unturned. Medical professionals don’t have time for that and they may not know their patient’s baseline, especially when first admitted, so they don’t notice changes due to new drugs. The family’s feedback is essential to keep patients safe and well. Doctors – please seek it out instead of ignoring, disdaining, or even resenting it. Actively invite feedback from the family!
We saw the isolation and loneliness of so many residents. There is not a lot to remain sane for. Tiny ladies in wheelchairs approach you in the hallway and whisper, “help me, help me!” Hallways resound with TV noise. Many sleep or stare blankly into space. Isolation and boredom blur the boundaries between sleeping, dreaming and waking. Strange how apparent opposites coexist here and create the worst of both worlds: isolation and lack of privacy — anxiety and boredom.
Talk to your children and your family doctor; tell them how you want your life as an elder to go. Could the so‐called “epidemic” of Alzheimer’s and dementia be, to some degree, a reflection of widespread and increasing overmedication? Recent studies reveal a link to increased risk of dementia from common anti-cholinergic drugs. Become more knowledgeable about what you take and why and advocate for those elders who can’t advocate for themselves.
Johanna Trimble is an active patient/family advocate based in Vancouver, BC. See her website here.