The Crossing Over

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Sunday night:

We’d all been there over the weekend, some of us since Thursday when we first got the call.  Two of my sons and their wives had already left,  having to work the next day.  My brothers’ sons were gone as well for the same reason. That or they simply couldn’t stay at our parents’ home anymore, waiting.

My brothers and I were in the kitchen, two rooms away from Mom’s makeshift hospital room.  The youngest stretched and yawned. “Well, I’m going home to bed.”

I stepped in front of him, closing the kitchen door so she wouldn’t hear. “What? I don’t think so.”

He was definitely off balance.  “What’s the problem?”

I informed him he was not leaving the rest of us to do all the work.  He had no idea what I was talking about.

“It is not fair for you to take off and leave…

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8 9 15 Journal entry: Desire: peace of mind

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Last night when we stopped for gas, I looked in the rearview mirror and saw my mother looking back, literally. When I’m concentrating, according to my ex-husband, I have tendency to look bored. But just at rest, when I’m relaxed it seems I have her natural expression: displeasure. At least that was always the natural face she presented to me. But this time, in the car mirror, it was not a disapproving but an accusing countenance. I have no idea where this came from. I hadn’t been thinking about her—in fact had actively been avoiding it so as to not fall into the guilt/second-guessing gulf again.

I had to take my glasses off so I wouldn’t see her. But then the guilt came rolling over me. Knowing how bad this knee replacement has been for me, would I have pushed her so hard? One afternoon, she was honest with me…

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Sunshine makes me cry

I am haunted by two images of my mother. The first is the day we went to see the orthopedic surgeon about her knee replacement. After that we went to lunch and to buy the new shoes she would wear to my sons’ weddings. She was afraid she wouldn’t have time or feel like shopping after her recovery. Since we didn’t know what colors she’d be wearing it was doubly important that she pick something she could wear to each of the three weddings that summer, but it had to fit her brace and look good too. She’s sitting on the rollater (walker with a seat and wheels) dressed in her tweed jacket, brown and rust plaid pleated skirt and Irish driver’s cap. She’d had her hair done the day before, the mother of pearl mixed with grayish curls poking out just perfectly from under the hat. The sun coming through the store window shone on the silver like tinsel on a Christmas tree. She’s looking up at me and smiling. The smile is almost that of a child: happy and trusting. She’s trusting that I have advised her well, that it’s all going to be OK. Believe me, my mother did not look at me that way often. That was almost a year ago today. It was in early March and the sun was melting what was left of a late winter snow, crocuses poking their little green spears through the earth, testing, “is it time to come out or shall we wait a few more days?” All was good. That’s what great about Spring: the hope of new birth, new life. We weren’t even hopeful; we were complacent. Just as Spring always comes, this was just fine, just like things always turned out fine.
The next image is the emaciated corpse-like person ( I almost want to say “thing” but I won’t insult her like that) laying in the hospital bed in my parents’ sitting room. Her head is drawn back unnaturally by the muscle spasms caused by overdosing with a tranquilizer that was supposed to help her. She can barely muster the strength to speak and spends her days looking at the walls and the drawn shades. There’s no sunshine, there’s no anticipation of better times, not even the wishing for spring and the flowers because she’ll never see them. There’s no hope in her eyes anymore, there’s only emptiness– not even the glare of accusation that she used to have for me as she continued the downhill course we started that March day.
No one had any idea that it would turn out the way it did of course. In fact, I just knew it was going to be alright: her knee would be replaced so she could walk with her walker again. It wouldn’t be easy but it was certainly doable. The ALS was so early it hadn’t even been diagnosed yet; it was still only a suspicion. She had plenty of time for living–“years,” the neurologist told us.
And so I did what I always did: I’m the oldest, the take charge and fix it one—bossy some might say. Plus I have the medical knowledge. Everyone, including her, trusted me to make the right decisions. I never should have taken that post: in the end it seems I didn’t know what the right thing to do was any more than anyone else.
But every day now those images haunt me, especially as the seasons and months roll around again to when it all started.
My mother had a beautiful smile when it was natural–when it rose up from inside her instead of when she was smiling for convention or to be polite. I so rarely saw that smile directed at me that I cherished that moment in the shoe store and I still do. But as she declined first monthly then weekly and finally every day, that memory was lost to me. It was replaced by the glare of accusation in her eyes fueling my desperation of finding something that was going to work, someone who was going to help me help her. And now, the memories of my mother are mostly of anguish. And failure. The memory of her face is that of a starving face, skin pulled taut, unseeing eyes, what hair that hadn’t fallen out brittle and leaden gray dull. Darkness. Shadows. Hopelessness.
Now that beautiful smile that I should be remembering with love and comfort instead tears at my soul. It’s a scathing reminder of how easily things can go wrong even when we’re trying our best and how impotent we are really are in the world. I had all the knowledge I needed, all the drive I needed, all the great ideas to help. But when the people who are truly in charge of your health: the nurses who ask for the orders, the doctors who write the orders and the people who are supposed to carry out not only doctor orders but family requests and wishes won’t cooperate or listen, all that knowledge and drive I had was worth less than spit on the sidewalk. She had one of the finest neurologists in the country, a world wide expert on ALS. And she had a fine and caring family doctor. But when the finest neurologist and the most caring family doctor do not talk to each other about the case and what is really happening, we might as well have had witch doctors for all the good it did.
And so now all that’s left are the memories. For my father it’s the gorgeous 18 year-old girl he met that Sunday in August. He has a photograph of her from that day and she’s smiling that smile. For my brothers it’s full cookie jars, trips to Florida, cheering at the swim meets and little league games, laughing and playing games around the house. For my “adopted” sisters it’s shopping trips and decorating and the gift of herself and emotional support when it was needed most. For me: well, I’ve already told you what I have left to hold onto. Now I’m trying to find a way to let it go while retaining the memory of the sun in her hair as she smiled up at me.

Cassandra

I am Cassandra |

For those not familiar with Greek mythology: Cassandra could foresee the future but was cursed with the fact that no one would believe or listen to her. That is how I have felt for the last few months. When I finally realized what was happening to my mother, no one would listen to me. No one would intercede on her behalf, no matter how much I asked, begged, or pointed out the reasons for my requests or the benefits to my mother. There were times when I truly thought I would lose my mind, I was so frustrated. When I realized it was too late, the guilt for not trying harder, for not somehow making the people in charge of her care see the reasons, DO something. Nope, she had ALS, it’s terminal, this is all due to the disease and there’s nothing that can be done about it.
In some of the myths, Cassandra foresaw her own death. So far I’ve been spared that, I only foresaw my mother’s.

Chapter One: the beginning of the end

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.

ALS : Between the Ice Buckets and the Theory of Everything lies human life.

With the increased awareness from this past summer’s Ice Bucket Challenge and now the movie that chronicles the life of physicist Stephen Hawking (of whom I have been a fan since the original Cosmos), ALS—amyotrophic lateral sclerosis—has garnered a great deal of attention. When my mother first began this, her last journey, I thought about blogging about it but there was so much hype surrounding the ice bucket thing that I did not want to feel lost in the crowd with such an intimate and painful exposition. And it did not seem to help to write about it at the time. Now it does.
This blog does not have a happy ending. There is no triumph here. Perhaps at the end there may be some closure. I am writing about my mother’s illness with ALS and her death and how I–and in some instances my family– experienced all of this. As for feelings I can only speak for myself but I saw what my brothers our sons experienced and witnessed their reactions and pain.
I know that we are not the only people who have experienced this. It may be of some comfort to others, there may some strength to be shared in simply knowing you are not alone in this. Perhaps a greater understanding of ALS in not only the general but more importantly the medical community will occur. I can only hope. In the meantime, this is my story.
I plan to post several episodes. Some will be harder than others to read. For those who may want to follow but not be exposed to those, I will signify it with something, an icon of a dying rose perhaps.