It was over two years ago, in the spring of 2010 when we first noticed that something was not right with Helen Miller - my mother-in-law. My mom noticed it first, she noticed Helen's speech was a bit 'slurred'. At first we thought maybe she's had a drink. It wasn't too noticeable really at first. But over the course of the next year it got worse.
We asked her about it, she tried to hide it and find a 'reasonable' explanation for it, such as it was her teeth causing the slurred speech. We thought that perhaps she's had mini-strokes and encouraged her to go to the doctor. But she didn't. Then her speech got worse. She complained of not being able to swallow and found another 'reasonable' explanation: her allergies were really bad that were causing all this build up in her throat and giving her difficulties with her swallowing.
She also seemed physically weaker, for example she couldn't open the car door, or the front door, and she blamed the carpal tunnel surgery she had years ago. Last fall when I visited (she lives in Omaha, we live in Phoenix) we went to the pumpkin patch, just like we do every fall when I visit with the kids. This time she fell flat down, scraped her face, her nose. As I helped her up and cleaned her I 'blamed' the heels she wore and the uneven dirt/mud/gravel that is not suited well for heels.
But when I went to visit this last Spring (2012) and saw her body shrink some 30lbs at least, her speech so distorted no-one could understand what she was saying, I could not ignore it anymore, nor I could stand her excuses and self-diagnosis from her teeth are falling to having bad allergies. It was then that I heard that she's been surviving on Boost shakes and yogurt for the last several months. So we went to a clinic despite her objections. Her long time boyfriend Joe and I tried to get her to cooperate with the nurse. They needed to do some testing to pin-point the reasons for her condition. They recommended an MRI and some other tests, but Helen never followed up. That was in April 2012. In May, Joe called an ambulance, and after she fought with the paramedics for some time, she finally went with them to the ER, but checked herself out the same evening. At that time an MRI didn't show any signs of a stroke, which is what we all thought she had. Her heart seemed in good health as well. The doctor at the ER wanted her to stay and do some more test, but she won't have it.
So on July 6, after she hasn't been able to eat or get out of bed very much, Joe called an ambulance again. She got admitted at Lakeside Hospital in Omaha, NE, she was too weak to fight and they kept her overnight. The very next morning, she had a respiratory failure and cardiac arrest. They revived her. By the time we got there on July 7th she was surrounded by machines and tubes probing in and out of her mouth. Her eyes opened, unfocused, she could not respond with a blink or a squeeze or a mumble or anything. Her body laying there, limp, swollen, weak. She wasn't there. This was the first and only time the doctors could do some test on her, and her prognosis was not favorable. They suspected and later confirmed she had ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig disease.
Years ago when I was in college I read a book called 'Tuesdays with Morrie' (by Mitch Albom) and that was the first time I heard of Lou Gehrig disease. And a month or so ago I was reading a book 'Body of Work' (by Christine Montross) where the author, a medical student mentioned a patient that she met during her medical schooling who was dying of the disease as well. I recall her saying this of her patient:
'He is the embodiment of what I never, ever want to experience. What I never want a loved one to know. Give me cancer, if you must. Give me Alzheimer's. Give me emphysema, congestive heart failure, diabetes. It is this disease that I fear each time my eyelids twitches, each time I feel numbness in an unexpected place. Ist it...? Could it possibly be..? Mr. L, please do not ever let me be you.'
So when I learned that this is what Helen has, and she's had it for a long time, undiagnosed, it made me sick to my stomach. The disease affects the cells in the brain and spinal cord that control voluntary muscle movements. Over time the body slowly gets paralyzed, and when it reaches the muscles in the chest area, it's impossible to breath on one's own.
The disease is terminal, there is no cure. Did she know this? Did she suspect it? Did she not want to know in fear of waking up every single day with the question if this would be her last? Would knowing make her remaining days frightening and she'd rather not bother? If I knew, if we knew, how would the last couple, few years of her life been different? Better? Worse? I cannot tell.
Helen never regained consciousness after they revived her. And because she couldn't respond with a blink or a squeeze, it's hard to tell if and how much brain damage she suffered when her breathing and heart stopped and they brought her back. We hoped she could hear, so when her eyes were open, signaling that she may be awake, I'd play music for her. I spent one night with her and after I couldn't sleep myself I was reading her a book 'The Last of the Tribe' by Monte Reel. We took turns visiting her: Joe, her daughter, her son-my husband, her brothers, me and the kids.
Helen did not leave a will, so on Wednesday July 11 we met with palliative care doctor and we made a decision to take Helen off life support. She died on Friday, July 13. She was 63.
I wasn't her daughter, but she treated me as one and I cared for her as if she were my mom. I will miss her.