You don’t know what you’ve had till it’s gone. I’m sure I’ve heard this phrase, or ones similar, said innumerable times over the course of the years. Its truth is never more poignant than when someone we care for passes suddenly.
We lost my mother on Monday. And, while it was somewhat sudden, the reality of the Alzheimer’s disease that she’d been diagnosed with over 3 years ago meant that it was just a matter of time. The hard truth was that my siblings and I had started losing my mother years ago. When she finally passed, the woman that we had known wasn’t really there anymore.
Four years ago, we visited her at her home in Arizona after she’d had a particularly nasty fall. That accident had revealed a host of other problems; forgotten bills, missed medications, lost money. We had conversations about the past and there were major gaps in her history. She had no idea how old she was. She couldn’t distinguish between two of the residences that we’d lived in during my lifetime. What frightened me most was that she’d still been driving a car at that point.
Within a few months, she would be diagnosed with Alzheimer’s. None of the medications they put her on did anything for the illness. Worse yet, they often made her suffer sever hallucinations. Bugs crawling out of her water bottle. Her father (who passed in ’88) coming out of a black hole in the ceiling. Eventually, she needed to be relocated to an assisted living facility.
But, before that could happen, her condition declined significantly. And, being as she was alone in Prescott, AZ, she was moved into a facility near my eldest sister out in Colorado. While this made the most sense for the family, it made it very difficult to visit. I spoke with her on the phone, lamenting her continued decline with every call. Our final visit with her was last year, during the summer of 2015. She recognized me, recognized my then 9-year-old son a bit, and at least pretended to know my wife. She could hold a bit of a conversation, laughed at some jokes, remembered songs, and was generally cheerful. But, by then, the past was a confused collection of bits and pieces, often crossing between strained reality and absolute fiction. My sister warned me before I saw her, “It’s like dealing with a 3-year-old. You have to do everything for her and lead her.” She was right, of course. But, no amount of warning can prepare you to see your parent in such a state.
When we left, I was struck hard by a sense of loss. Yes, she was still there, but, mentally, it was a shell of the woman who had been my mother. Beyond the visual recognition and general understanding of who I was, there was no longer a connection to the past. The ties had been cut on her end, to no fault of her own.
Upon returning home from that trip, I found myself already mourning my mother’s passing. Not just the passing of whom she had been, but of the family history both shared and that which had come before me. I mourned knowing that I would have to poorly relate her stories to my son, instead of him being able to hear them first hand. I mourned knowing that I wanted to accomplish just one more thing, anything really, just to have her be proud of me one more time, but that it was too late.
By Christmas of 2015, she was unable to use a phone. By then, the siblings received text updates from my sister on a regular basis. Sometimes funny. Often frustrating. Maddeningly halfway across the country. All the while, despite her decline in mental status, her overall health remained steady.
On August 21st, my sister texted, “Was shocked when I came to see mom this afternoon.” I was on vacation in NC at the time. At the time, the content of the text didn’t seem like too much of a problem. Mom’s knees were bothering her, or at least that was suspected. She looked pale and lethargic. That was all we heard about. What my sister would later tell me was that my mother was having trouble keeping her head up and raising her hand. She just didn’t want anyone to worry. And, as the week went on, Mom showed signs of improvement. Her color improved. She was responding better. Just seemed to have had a lapse. By the time I returned from NC, the texts were fewer. Mom was lethargic on September 4th, but nothing seemed out of the ordinary.
On Labor Day, my sister texted late in the afternoon that my mom had taken a drink of water, but apparently forgot to swallow, only to have the water come out as she dozed off a moment later. This was followed by a funny comment about how she was swallowing sherbet just fine. I laughed a bit, but was worried. An hour later I texted my discomfort at this new development. Forgetting to swallow could be dangerous. Something to mention to the doctor? My sister texted back: Hopefully I talk to someone tomorrow.
That message arrived at 5:47 pm ET. Later, I would hear that my sister left, the staff fed Mom, got her showered, and put her to bed. When they checked on her an hour later, she’d passed in her sleep. Her body had finally caught up with her mind.
In the end, my mother died without fear or pain. She’d lived some her happiest years at the end because she no longer had the burden of this world on her mind. I can think of many worse ways to go out.
The hardest part of this disease was watching my Mom slowly fade away. Knowing what had been and what would never be again, and watching it all unfold at an agonizing pace.
Mom’s active part in the story is over. That much is true. And her departure leaves a large gap in my life. But, I’m comforted knowing that her story carries on through me and my little family. That my love for my child is a reflection of all of the love she gave me. That I will tell her story to the best of my ability for as long as I can. And I will never wait to appreciate what I have until it’s gone.