January 22, 2015: should have been my mother’s 80th birthday.
My mother missed being 80 years old by 80 hours. I know this because I found her baby book while looking through old scrap books. She died at 1134 AM on the 19th and was born at 1030 PM on the 22nd. I even figured out exactly how many minutes between her death and the time she was born on her upcoming birthday when she would truly have been alive for 80 years. Isn’t it strange how we latch onto little things like this during a time of stress? Why in the world did I do that? I think it’s to try and make sense of things that I thought I understood. For nearly 40 years now I’ve been an RN. I did hospice and home-care work back when I first got out of nursing school, then critical care, then labor and delivery. I cared for many people at the end of their life, including the very long-lived and the just born. But I’m steeped right now in what I can only call confusion and disbelief.
A week later: the grief is being replaced. My emotions fly between anger, guilt and sorrow: I don’t know which I’m feeling anymore. My mother was diagnosed with ALS in August 2014. She died of malnutrition and probably sepsis from a huge decubitus ulcer. She didn’t have to die when she did. She didn’t have to live with the pain she did for so many weeks. Believe me, when one is in the pain she experienced an hour seems like a year. None of this had to happen this way. She was the victim of a medical delivery system that sees a terminal diagnosis and writes the patient off, not giving a rat’s red rear when the disease would actually begin to kill. No one, not her sons, her family doctor, the home health nursing company employees that we paid to care for her, her own grandson who is a doctor, nor hospice– especially not hospice– seemed to see any reason to do anything to help her health situation improve. No one but me and her neurologist, that is.
After watching her symptoms for two years– yes, two years— Mom’s neurologist, one of the top motor neuron disease specialists in the country, told her that he believed that she had early ALS. Before that he could not rule out any other type of neuromotor disease including the neuropathy that occurs in diabetes. At the rate her symptoms were progressing, he informed us, she would need a wheelchair within the next year but that there was no reason she could not be fairly independent with good physical therapy and nutrition, some help around the house and some medical equipment. Two months later she was bedridden and dying.
Why? Everyone said, “Oh, ALS is such a terrible disease! Look how fast it’s progressing!”
It was a lie. What happened to my mother was that I was the only one willing to look at her with any potential and to put in the work necessary to get her there. And unfortunately for both of us, I wasn’t strong enough to fight against the enclave of people who were more than ready to abandon her. Just as in the “rehab facility” my ideas, which became requests which melded into pleas, fell on unhearing ears and closed minds. For example, while I bought the transfer board on line and had it in two days, it took two months of pleading to get her a wheelchair she could sit in comfortably.
Her afternoon, night and weekend caregivers, unbeknownst to me, were overmedicating her with Haldol. Why didn’t the hospice nurse who came three times a week notice this? But worse, why didn’t I notice it? Because I had taken her family doctor’s advice—not her neurologist–and tried to become just a daughter, not a nurse and not an advocate. Strange as I think on that now, why would he advise me not to be an advocate? He had always seemed to be a very caring and concerned family practitioner, taking care of both of my parents and my brother for years. We all liked him personally and I had every faith in him that he had my mother’s best interests at heart. The problem was, I believe, what he saw as best interests was a quick death as soon as possible, where what I envisioned was getting her back healthy so she could live a year or so more. So she could see her second and maybe even third great grandchild born. So she could go out with her Red Hat Society for lunch once in awhile. So she could continue to sing in the Senior Citizen’s Choir. So she could see each season in her garden one more time since she’d missed it all this last year. So she could argue with my father again.
Don’t get me wrong, I wasn’t being unrealistic. I know all about ALS. I probably know more about it than her doctor and the medical people assigned to her combined. Aside from reading every scholarly paper on it published in the past 15 years—it didn’t take long, there aren’t that many—and reading everything the ALS Society, the MD (Muscular Dystrophy) Society, MS (Multiple Sclerosis) Society put out. I scanned PubMed and Medscape (I’m members of both) weekly looking for any new information. I read everything about every clinical study on ALS out there at least twice. I went to her neurology appointments with her and took notes so that I wouldn’t forget anything when I explained it to her again. She was a home health aid and had a lot of medical knowledge but the fact that she had some kind of motor-neuron disease was completely overwhelming to her, so I had to keep reiterating what the doctor had told her.
At first he thought it might just be a diabetic neuropathy that was confined to her left lower leg. The fact that it didn’t seem to spread for over a year seemed to back up that theory. But then she had another EMG in June 2014 which showed that the motor neuron death that is seen with ALS was mildly occurring in her paraspinal and upper arm muscles. He and the physical therapist both explained in great detail that if she did the PT and kept the muscles strong it would be a long time before those muscle would be seriously affected by the disease.
Great news, right? Hardly. When the “rehab facility” doctor saw that she had ALS, he seemed to stop caring. That’s at about the same time that her Medicare ran out and they moved her from the rehab unit of the “facility” to the long term care unit. The excuse was that they didn’t have any semi-private rooms open in the rehab unit but she would still be considered rehab. We couldn’t afford to pay twice was much for a private room as the semiprivate. What infuriated me was that I saw empty semi-privae beds daily on the rehab floor as I walked back to her room. She still got PT twice a day but everything else stopped. It was then I began to realize she had been written off and I had the fight of my life ahead of me to save her.