By Joelle Besnette
When my mother had a cancer diagnosis back in fall of 2010, all of us were shocked.
She was a petite, vivacious, and energetic woman who had just celebrated her 80th birthday. My father passed years before that, and she had lived completely independently and continued to work full-time at the same company she started with 35-plus years earlier. She had no intentions of retiring, moving away from her home of 40 years, or slowing down in any way, shape, or form. She may have been tiny, but she was a strong (and rather stubborn) woman!
In early 2011, against the advice of her oncologist, she underwent several chemo treatments (the doctor recommended radiation treatment, no chemo, to begin as soon as possible. She chose chemo, no radiation, to begin after a 4-month delay so she could celebrate the holidays as she wished, with family). After her last treatment, she traveled nearly 2500 miles to meet up with my family and spend time on a California beach – something that, to my knowledge, she had never done before. She had visited Atlantic City back in the 50’s and hit the beach with her girlfriends (see pic – mom on the left), and she went to California (inland) once to visit family, but she never seemed drawn to the ocean. In contrast, my husband, children, and in-laws make a habit of visiting the Pacific just about each year. So, we were thrilled when she felt well enough to agree to travel with us to southern California to celebrate her 81st birthday.
Our trip was full of memories I will always cherish (see beach pic below). We were stunned when my mom climbed a steep half-mile hill to get back to our condo. We thought she was on the road to recovery, and hoped to have her with us at least several more years. All that changed, and quickly, in the fall.
She suddenly had trouble lifting one arm.
We were all perplexed, but chalked it up to some minor injury or perhaps arthritis. Soon, she couldn’t lift either arm more than parallel to the ground. She had to quit driving, and was unable to travel to visit my brother and his family for Thanksgiving. During our conversations, she minimized her health issues, but we knew at that point something was seriously wrong. She was diagnosed with dermatomyositis, an auto-immune disease that causes weakness of the muscles. When she reluctantly announced her retirement at the end of the year, it was her way of admitting she couldn’t continue life as she had known and loved it.
Fortunately, through the local County Agency on Aging, she was able to find someone who was willing to come to the house to help with errands and housekeeping, but nothing else. She would have been a good candidate for assisted living at this point, but she simply wouldn’t move out of the house. My brother and I started looking for in-home healthcare providers. Meanwhile, she admitted having difficulty swallowing. Within a month she was on a feeding tube.
She was forced to leave her home when she was taken to the hospital by a neighbor in January 2012, and diagnosed with pneumonia. She never would return home, although she desperately wanted to do so and continued to hold on to hope for several weeks. The hospital social worker had difficulty finding a facility with an open bed; she needed skilled nursing care at this point. My mother was adamant about wanting to go to a local facility – one that was primarily independent/assisted living with limited skilled nursing care. She had friends who lived there, people who were still independent and who were eager to have her nearby; they had known her many years, and they wanted to help any way they could. However, time was running short and options were few. She remained in the hospital as long as her healthcare benefits would allow, and at the last minute, was transported across county lines to a facility near her birth town – but far from her hometown.
She felt disconnected from her support system, she disliked the harried and overworked staff, and she watched enviously but hopefully as her roommates went back home.
At this point, my brother in one state and I in another began looking for long-term care and putting her on waitlists. The healthcare benefits clock was ticking again; she could only stay in the facility 90 days. The dermatomyositis was aggressively attacking her body and was unresponsive to treatment. Complications arose, and she passed away during the night just before the 90-day deadline.
In hindsight, it all happened so fast that it still feels like a blur. Would things have been better if she’d been willing to move to an assisted living facility? Perhaps; if she’d had daily interaction with healthcare professionals, they might have been able to intervene earlier. Would she have had better treatment, or a better experience, in a different skilled nursing facility? Would hospice or palliative care have made things more comfortable for her? We don’t and can’t know; however, throughout this process, we did our best – we respected my mother’s choices, even when we didn’t agree.
No matter what happened, she always preserved her dignity.