Mother’s Day is a time to show appreciation for the special women in our lives who kissed away our boo-boos, dried our tears, and forced us to eat our vegetables. However, for those of us whose mothers are no longer with us, this holiday can be bittersweet. I have plenty of wonderful memories of my mom that I reflect on often. However, as I think about her last days on this earth, I am forced to confront the painful memories surrounding that time. While I am forever grateful that I got to be by her side, I am saddened when I think about the ways in which the system failed us, and countless others, in respectfully handling the unique challenges surrounding palliative care.
While my mom endured chronic illness for most of my life, her will to live pushed her to beat the odds time and again. In early 2015, I noticed her health taking an overall nosedive, and I got the feeling that this was the beginning of the end. After a fall at home, my mom was transported to a local hospital, where she stayed for nearly two months receiving treatment for a wound from the fall, as well as an infection requiring intravenous antibiotics. As a Medicare recipient, she had a 60-day time limit for her hospital stay (under Medicare, hospital stays are only covered 100% for up to 60 days). As the 60-day mark approached, I was put in touch with a hospital social worker to evaluate our options. This was nothing new. Since my mom’s health issues were ongoing, and had been worsening for a few years, we’d been through several cycles of a long hospital stay, followed by a rehabilitation facility (aka, nursing home), and back to her home. Side note; if you’ve never seen the inside of a rehabilitation or skilled nursing facility that Medicare will cover, I urge you to go visit one or two. My mom had done time in several of these places before, and I was in no hurry to watch her die in one. With that in mind, I started making calls, and fought hard to get her transferred to a nearby Long-Term Acute Care (LTAC) hospital. It was much better than the alternative, and it bought us time, as the Medicare countdown would start over from zero.
After a few weeks in the LTAC hospital, it was clear that things were heading down hill fast. No matter how weak her body had gotten, my mom’s mind had always remained sharp. It was one of the things I loved most about her; she had a wonderful sense of humor even in the worst of situations. Over the course of about a week, she started to become confused, she couldn’t eat or swallow pills, and she was sleeping nearly all the time. Even when she was awake, her eyes were glazed and it was unclear if she was seeing what was going on around her. She would sometimes try to speak, but the words were stuck and she just couldn’t get it out. It was obvious that she didn’t have a lot of time left. And even in the middle of making excruciating end of life decisions for my mom, the social worker conversation started all over again. The allotted Medicare stay was running out, so they needed to consider other options. Every person in that hospital knew without a doubt that this woman had a matter of days left to live, and yet they were still talking to me about which rehabilitation facilities would be best to transfer her to. Precious moments that I could have spent by my mother’s side in her last hours, were instead spent begging hospital administrators to see her, to see me, as a human being instead of a dollar sign. In the early morning hours of August 21, 2015, my mom took her last breath. It was less than forty-eight hours after the LTAC social worker had first approached me about relocating her to a different facility.
I walked the path of a caregiver by mom’s side for years, and I’ve experienced just how cold and unyielding the health care system can be. Don’t get me wrong, we’ve had many positive interactions with people in the health care field. Especially at the end of my mom’s life, there were many doctors, nurses, aides, and techs who treated my mom with dignity, respect, and kindness. The problem is, the system in which these people operate does no such thing. Health care is big business, after all, and there isn’t much consideration for the end user. As a caregiver, this is maddening. When you are entrusted by someone you love to make difficult decisions for them when they are at their most vulnerable, the health care system should be a supportive place to do that; not just another stressor in an already stressful situation. This is just one reason why What’s The Fix? is important to me. It is my hope to connect with people inside the system who can make a difference and make this path a little easier for others who will walk it after me. My voice is just one, but maybe if enough stories like mine are shared, those with the power to make change from the inside will start to listen.