Sh*t List

"How Dare You?"

This is the phrase most often skipped. The one I don't say. The one running on a repeat loop in my head as I face the irate, bored, indifferent or just plain arrogant face across whichever counter I happen to be leaning that day.

Yesterday, I tried to follow up with a nurse on a referral. She spent 15 minutes finding anyone else whom she could possibly pawn the responsibility off on. More time that it would have taken to make the call. I admit, I was frustrated. The world went slow motion as I slowly tapped my toe. My utter lack of poker face once again reared up to haunt me as the words "You are so lazy," typed themselves out in running text across my forehead.

Pulling me into another room the nurse sat me down and with a straight face said "I'm going to help you. If it were me I'd want to know. You are alienating people. No one will help you with your attitude. I know exactly how you feel... I never got upset with the people who were helping me".

Inside my head I was screaming, "But you're NOT helping me. You are the opposite of helping!"

But I flaked out. Sheer frustration and irritation meant words left me in the form of crocodile tears and an inability to say what was running through my head. She left me there, in a puddle and when I emerged to check on mom I found her, leaning over my mother telling her that I had no right to stomp on my mother's dreams of walking again and that she...the hero nurse...was going to help her when I wouldn't. She had the solution...my mother should check in to Eskaton!

Excuse me? WTF....

My mother has been given two months or so left to live. This is the estimated time it would take her to recover from her stroke in a nursing facility. 4 hours a day of therapy to regain her mobility only to have the cancer rob her of it as fast as she can get it. I've never been a really angry person but for a moment, looking at the hope and excitement in mom's eyes before I asked her if she thought that walking again meant the cancer would be cured, I was boiling inside. Watching her cry as she realized that wasn't the case broke my heart. I feel it, the anger, forming a hard little knot as I listen to her sob daily about karma and what did she do wrong as I do unspeakable things to try to alleviate her pain. Bowel dis-impaction. Belly Injections. Narcotics. Ice Packs. Massage. Meditation. Social Workers. Distractions. Parties. An endless parade of house guests. Waking up ever hour on the hour every night to argue that we are not on a train between heaven and hell. To soothe that our souls are safe and that the little boy in the corner calling her name is not real. To bring forth more tears of frustration upon the realization that once again her body has betrayed her and she has not, as she thought, finally been able to shit. Enemas. More tears. Attempts by me to focus on the news. On visitors. On a party or a dinner. More tears as she realizes that I am not my dad. That he went first and she's not sure she believes in heaven anymore. She is alone some days. More alone that I can understand just yet.

I remember ordering a book online with my dad's laptop shortly after he died. His password was set to visible. "Glenn's Unending Solitude". I cried for three days. How sick a joke that the only one who could understand my mother's pain, who could truly comfort her, is already gone.

"You can complain if you want but I need to say this," saucer-eyed nurse says testily. "Your mom has a right to her life."

It's hard to know what to say in these situations besides Fuck You. Sadly, I've noticed over the years that resorting to telling someone off, no matter how much they deserve it, always makes you look like the unreasonable one. So I just cried. Not much better in my book but at least a slightly more sympathetic reaction.

It would be different if it were just one nurse. Something about this system though...you never know how broken it is until it's broken you.

First it was her eye doctor who dispassionately decreed in January that my mother had a rare form of glaucoma and would lose her sight. She was told to do nothing and return in 6 months. Her request for an MRI was denied.

Then it was her primary care doctor who, from February through June sent my mother to three specialists, turned her away over and over when she was late or missed appointments and yelled at her for not respecting Her time. My mother's complaints of constant vomiting, loss of balance, loss of vision and constant falling, sleeping and memory loss/visual hallucinations were all dismissed with a Nexium prescription and a GI referral.

Once the MRI happened and we were in the hospital it was nurses who wouldn't come when called, a surgeon who had to begged to aspirate a hematoma rather than put her under for a third brain surgery in as many weeks (thank god I knew the word for it), a meddling aunt, and an oncologist who would not visit. There were PT and speech therapists who wouldn't release her, then doctors who downgraded her status. Showers were a fight to the death between me and the charge nurses. If I slept at home I would come back to the hospital to find her moved to another room without her helmet, or a nurse ignoring the huge sign over her bead warning of a broken wrist, grabbing the same wrist while she writhed and screamed in pain for blood pressure stats. No one listened about her weak veins until every last one was popped. Then there was the night she had an allergy to the food in the tube in her nose and it took me six hours and three irate nurses, one resident and Finally a doctor on call to convince the idiot on her case that night to discontinue feeding and administer Benadryl. This after six hours of her unable to breath and neck swelling that brought her throat in line with her ears. "I am a professional...the nurse kept saying. Don't tell me how to do my job. She has no allergies". Six hours later someone remembers to add her allergies to the chart.

Then it was home again. Home health Physical Therapy said to take off the boots Nuero PT gave us in the hospital and to remove the wrist guard they had placed on her listless left wrist. One week later she had dislocated her wrist by rolling on it. Two weeks later her arches had fallen.

After weeks of fighting with the insurance company I was then told that there was nothing I could do to get leg massagers in-home. Three weeks in she had developed a hip to ankle blood clot. I will be giving my mother heparin injections in her stomach for the rest of her life.

From there it sort of went downhill.

The nurses in Radiation who wouldn't transfer mom from a wheelchair had a field day ordering gurney service. 8 home health aides came and went with excuses ranging from "Your trees are scary" to "I don't do dishes". One pushed her out of the Hoyer lift and another tried to use it to change diapers. We were on our own again with an apology and a fruit basket from a company that only returned a call after I contacted the CEO.

Apria has delivered no less than three broken hospital beds and two broken wheelchairs.

Her doctor won't return phone calls.

Oxygen and showering were called luxury items by her insurance.

Getting a prescription refilled involves begging, tears and hopping/skipping rain dance of sorts in our local pharmacy.

Social security and FMLA paperwork and the people who administrate it have left me in sobbing puddle underneath the kitchen table more than once. I truly believe there is a special place in hell for the woman who worked mom's case. It took six weeks, endless calls, two supervisors and threatening lawyer just to get her widow's benefits and convince them that being bed bound with a terminal illness counts as permanently disabled. I swear it's enough to make me a Republican. At least with a multitude of private industries you have the luxury of telling someone to go fuck themselves and go to their competition. With the government, all that does is stick you at the back of the line with someone even less helpful.

I make excuses on a daily basis for the people my mother loves who aren't here. Each day is like the one before...she can't tell the passage of time anymore. "Not today mom....maybe next week"..."maybe we can call her".... "maybe they were busy...I'm sure no one forgot you"...."and my favorite, "Don't worry mom...I promise I won't leave you." That last one is the only one that stops the crying.

Mom's Physician finally called today. Not sure how I will get through her impending visit without telling her that the only reason I am not suing her at the moment is because my mother thinks civil suits are tacky.

Guess I've always been more comfortable with the pink flamingo set because frankly... none of that woman's patients are safe as far as I am concerned.

Meanwhile this list grows daily with new slights and new indignities. I gotta work on my poker face.

As the S-list grows however, so does my list of angels on earth who somehow surpass the muck of the system they are in and shine out with all the force of the divine in their sincerity and caring. Larry, the home health nurse who kept coming even when the insurance ran out and baked us pumpkin bread the week we had no visitors and couldn't get out to the store... the hospice nurses-enough said... then there is Evelyn, the only nurse on floor five who would come when her call button was pushed right away or Melissa, the nurse on the cancer floor who fought six angry nurses for the ability to get a shower gurney and help me bathe my mother in the hospital. There is Mark, who made mom's wishes for her yard come true and all the family and friends who came together to make it possible for her to see her oldest daughter get, if not really married, than at least publicly committed.

The laws of spiritual physics seem clear, for every 3 incompetent assholes, there is one shining moment of grace and love that might otherwise have gone unnoticed.

Some of it has to do with what it is that you invite into your life. I am learning to set clearer boundaries. I am also learning that asking for what you need...sometimes makes you a bitch. And that's okay. For example, high maintenance visitors. Don't call me for directions...use map quest. Get your own coffee...it's in the kitchen. Don't watch me do dishes...offer to help. Or relatives who want to argue...whatever it is that pissed you off...if you're still mad in four months I'd be happy to discuss it. Until then...kick rocks. There's no room here for that. Or worst of all, my own inner critic. Whatever could have been done better or differently...it's too late. Suck it up. Move on. There's only today which means my morning meltdown in the laundry room or the gut that is growing around my middle daily or my utter inability to stem the tide of tears no matter how silly... it's over already. Gone. Not part of this moment's reality.

My father was big on this when he was alive and tried desperately to explain it to me when he was dying. "Life is to short to waste it angry," he'd say. I've spent the last eight months angry. With cause. But nonetheless, I'm hoping that what time I have for making memories with mom that is left is tinged a little lighter, a little more sweet with less of the biting bitterness that has coated this whole situation. The engagement party was a wonder in more ways than one. For one full day...we all just had fun.

I am looking forward to more days like that. As many as I can have. And in between the tears and frustration and facial tics and fanatical phone slamming and inability to function pre-coffee... I know that I will have brief moments of grace. Howver bad it gets....there is always, just a little bit, of Light.