Wednesday Beach Report

The wind is blowing here in its usual merciless way. Sand in the eyes. Waves too big for an underfed sea lion trying to haul out onto the sand to get warm. "Wait," I said to the man with a gaggle of kids. They were all carrying sticks in the harmless way that kids do. "Don't let them get too close." I think he thought I was worrying about the kids. I explained that we didn't want the kids to scare the sea lion back into the water. "It's cold," I said. "See how skinny it is. It's coming out of the water to get warm. I'm going to call the rescue hotline right now," I said, pulling out my cell phone. I became someone with authority to him then. He commanded his kids back from the surf. But it was too late. The sea lion was washed into the waves, too weak to even swim. Which I suppose made it a bad candidate for rescue in the first place. I consoled myself with that. And the fact that another family now knows about starving sea lions.

I had a dream last night. Flying like a kite in a tireless wind, I caught only the tail end of it before I woke, mumbling. I said something to my father. He said something to me. Something about my mother.

I don't remember my dreams often. But a night or two after I returned home from Iowa, I had a terrible nightmare. There were plot twists galore, betrayal by friends, and when I lay helpless on the floor, a zombie grabbed my foot and began to drag me away. Help me. Help me. Help me. I whimpered in a tiny voice that took every ounce of my strength. I've wondered if the zombie might be my mother. Weird, I know. But I don't believe in zombies, and she is the most recent loved one to have crossed into that other world. Maybe she wanted company.

On a more encouraging note, I came home from Iowa, and my son and his family came to visit the very next day. We went whale watching and the water was as flat as glass. We saw sea lions, and two kinds of dolphins, and gray whales.

Heron in the harbor

Dolphins, not sharks

whale's tale

Report from Pillville: the last report

Ethel Catherine MacDonald 9-18-1924 to 3-13-2016

My mom left this world in the wee hours of this morning. I was in Iowa at her side. In the days since her decline a few days ago, her room was full of family and friends. We visited and told stories, and even though she couldn't join the conversation, we think she was listening. 

I was alone with her as her breathing slowed just after 1 a.m.. "You've had a good long life," I said. "Lots and lots of people love you." Her breathing became so shallow it was barely noticeable, then she left us.

Postcard from Pillville: A Rant

Chocolate. My current medication.

My mom's regimen of a dozen prescriptions was a bit more complicated. After she moved in with me in August of 2009, it took me at least a month to get acquainted with her routine. She filled her own pillboxes in those early days of living together, but confusion would ensue when the pharmacy re-filled a prescription with a different brand of drug than the one she was used to. When I cleaned her room, I often found pills on the floor or in her bed. More and more frequently she asked me questions that made me worry she didn't quite know what she was doing. Eventually, I became the dispenser of meds, filling three weeks worth of pillboxes at time from a giant plastic box of bottles divided into sections labelled A.M., P.M., and 2X PER DAY. 

Now that she's in a nursing home, I'm relieved of all that. But I've been left with a gallon zip-lock bag of meds. My mom moved out in October and I still have the bag of drugs. No class-one narcotics, mind you, just heart meds and blood pressure pills. Pills to help the sinuses, the digestion, drops for the eyes and the ears, and god only knows what else. Burping, farting, itching, swallowing--name your problem and there's a drug for it. I know drugs are not to be disposed of casually by flushing or in a landfill, but the pharmacy (Vons) that filled the prescriptions won't take them back. The DEA hotline had me on hold today for eleven minutes. The Internet has steered me wrong--Walgreens does not take back meds and they don't know who does. I called 211. Nope. They have nothing in their database. 

But I'm a late-night Google-er and I found a note I'd tucked into the bag that I'd forgotten about. It was the name of a pharmacy in the neighboring town. I called them, and they say they will take back the meds. I hope it turns out to be true.

Caregiving is hard enough. When it's over you want it to be over. Not that it is if you are still handling the mail and the banking, etc. I think all pharmacies should take back what they fill. And yes, I know I could have gone to the Sheriff's office. I did that after Dan died and dropped off the morphine and the Oxythis and the Oxythat into a secure bin, but I didn't especially want to retrace those steps. And by the way, I still have a tub of needles from Dan. The Sheriff's office does not take those, and they're not supposed to go in a landfill either, and I tried taking them to a toxic waste site. That was a no-go. I could, however, send away for a special mailer that costs 20-some dollars, and yes, I have the 20 bucks, but really, this is the shit that just wears you down. 

Thanks for listening. 

Any artists out their who make things out of pills? I have a bag full.

Minnesota: Land of 10,000 Tears

This post comes to you from my condo in St. Paul, Mn.--a condo I bought back in 2008 pre-economic downturn against the advice of my trusty financial advisor. He was right.

But post-divorce, I was making all kinds of crazy plans. I would have taken out a jumbo loan and financed the Taj Mahal at an interest rate high enough to reach the moon if I'd thought it was the solution to how shitty I felt back then. Daughter M was not doing the best in those days either, and I think living here was some sort of balm--as much balm as a physical thing can be for a hurt that's not at all physical. She lived here for three years, and now the other daughter, C, is living here with her husband. With my mom in a nursing home in northeast Iowa, the Twin Cities are now a good gateway to visiting her.

The frozen rural place/a.k.a. Iowa--taken on the road trip with C and her husband to see my mom

Photo of my mom and me taken yesterday. 

It was -28 degrees today in St. Paul. I went out for a walk. The sidewalks were dry and clean. With my eyes watering from the cold and my frozen tears sticking my eyelashes together, I thought about  my complicated history with Minnesota. I came here for college in 1970 just weeks after signing the final paperwork relinquishing my son for adoption. The next year I had major surgery on my spine and a month later my father died suddenly of a heart attack. The following year there was another back surgery. Thirty years later I came here again and again post divorce. I've walked in every type of weather. I've walked in deep into the woods and on country roads in the pitch black winter night while the sky was ripped apart by shooting stars. I've walked ankle deep in the mud on a lakeshore, along the Mississippi River in driving rain, in downtown St. Paul bathed in Christmas lights. I've walked drunk. I've walked sober. I've walked wailing out loud, talking to myself, while plotting mayhem, and while plotting my own destruction. Today I just walked, glad to be out under the sky.

Today, walking in St. Paul

Walking is what I do. Sad, happy, mad, glad, tired, wired, here, there. 

And while I've shed plenty of tears in California, somehow I always feel happier there.

Last month walking on the beach in Cambria, CA

And tomorrow, I'll be back in Margaritaville (a.k.a. Ventura County)

Though I have to disclose that this photo was actually taken in a Mexican Restaurant in Dubuque, IA

Another road trip photo--just because.

Leaving Albuquerque

power lines in the Albuquerque dawn 

I dreamed I died last night.

Terminally ill, I invoked the right to die and took a large capsule of morphine. People knew I was going to do it. But I did it without much fanfare. Oh, by the way, I told one of my daughters. I took the capsule and tonight when I go to bed, I won't wake up.

This morning when I awoke, I felt weighed down. The responsibility of love is not a weightless thing.  It has heft and substance and every morning we pick it up again--if we are so blessed to awake and have love in our lives.

The road trip  continues. I'm off to see friends, friends of friends, and family. Places familiar and new.  Sights seen and unseen. Connections winding tighter. The power of love anchoring me to this earth and rising upward and beyond the known world.

Do you see the outstretched hand? 

Report from Pillville: The Balance of Opposites

Photo from this morning's walk along the beach in Ventura--a local artist stacks these stones.

My mom is more frail than ever but feels well.

I'm happier and stronger than I've been in a long long time but feel spent.

Those statements balance one another in a way I can't quite explain. And maybe there's balance too in the fact that my mom is sleeping more and more these days while I am sleeping less and less. And even when I do sleep, I awake feeling hung over. There's no gin involved in this, I swear--at least not for me. She is, of course, still having her martini. The balance of opposites right here in Pillville.

I almost had to sit during my T'ai Chi Chih practice yesterday. Today I opted out of yoga and took a walk. I need the sky over my head to feel the vastness of possibility. I need to be quiet.

I'm in the process of transitioning my mom into a nursing home after more than 3 years of caring for her in my house. I'm filling out the forms for Medi-Cal and Iowa Medicaid. I'm gathering documentation. I'm making travel plans and not making travel plans. I'm formulating a Plan A and a Plan B and wondering if they are mutually exclusive while wondering if both of them will fall away.

I'm sitting on the couch in my living room as I write this, wholly aware of the sound of her breathing in her room, while feeling that I'm barely breathing at all.

My heart is in Indiana with the man that I love and my heart is here, heavy as a stone, and so light it is a tower reaching for the sky.

This morning's walk took me past the estuary. Here it is looking inland--and looking out to the sea, just like me.

The path I was on took me under the freeway, framing a perfect view of the hills,
and it took me across the railroad tracks. Travel plans, vistas, hopes, dreams,manifested through a camera lens-- and if you look closely at the photo below you'll see a white cross in the lower left. I didn't see it when I took the photo.

Why We Should Eat Dessert

Pavlova by candlelight, prepared by my friend Sasha for our Friday night dessert after dinner on the patio.

I ask myself these days what I'm doing right, what I've done wrong. What I can re-do. What I don't know how to do. What I don't know how to do, but must do.

I'm hoping to move my mother into a nursing home in Iowa. Put her in reach of more people who love her. Put her in the care of nurses 24/7. Put myself in airplanes regularly again like when she was in the care of my brother and his girlfriend on the east coast.

This past weekend was as mixed as a weekend can be. A lovely Friday evening dinner with friends, daughter M here for the weekend. Then Sunday devolved into the unblog-able. There were two calls to the hospice nurse this weekend, two new meds in the past week. This afternoon the moaning was so loud that I thought for a moment I literally could not stand it. As per usual, the moaning does not really signify pain, it's an unconscious thing that my mom does not know she's doing. How can she stop it if she doesn't know she's doing it? How can I stand it when she can't stop it?

Every day I write in my little red "mom notebook" what I have to do, what I've done. I try to keep the plan moving along, but the plan might be changing. Plan A, Plan B. Maybe there's a Plan C that I don't even know about yet.

One of my favorite bloggers lost her mother Alice last Wednesday. Andrea's adventures with Alice have been sort of a guiding light for me. Now that light is out. I have plenty of support left, but I ask myself if I'm ready to let go of my mom. To really let go. I think I am. But I also think it will be harder than I imagine.

Tonight I'm remembering this dream I had when Dan was dying. How the dream helped me know what to do. How it changed the plan. How everything fell into place. How I had to let go.

Report from Pillville: How to plan

1) Fill the pillboxes for the next two weeks as if you are sure they will be needed.

2) Thank M and her friend for cleaning up your mom's coffee spills while you were at yoga.

3)  Thank M and her friend for making your mom another piece of toast when she forgot she'd eaten the first one.

4) Spill your own full cup of a perfect latté all over your stack of journals, your lamp, your end table and the white chair in your bedroom.

5) Clean up your mess, but decide that the slipcover to the chair can be spot cleaned, not removed and washed.

6) Talk to your other daughter on the phone about getting her grandmother to Iowa (or not) about getting her into a nursing home in a timely fashion there (or not) about you staying in Iowa longer than planned (or not).

7) In the same conversation decide to take your mom's wheelchair to Iowa. (duh) Decide that the daughter's husband will pick you up from the airport in Minnesota and take you to the airport hotel so your mom can rest before the drive the next day. Decide to get just one room for the two of you. Joke about hiring an exorcist to eliminate the possibility of middle of the night shrieks and hollers.

8) Throw the slipcover in the washing machine. Remove the towel from the bottom of the lamp. Note to self: be careful when switching the lamp on later.

9) Realize that your mom has picked new wounds into the skin on her arms while you wrote this post. And then wonder why the anti-anxiety med worked the first day of the picking, but doesn't seem to be working now.

10) Wonder when you might see this man you love again. Go over the plans and try to make peace with potential failure of said plans.

11) Realize that you started this post an hour ago.

12) Ponder your goals for today: Unsubscribe  to a few more emails. Pay the overdue water bill. Or not.

13) Make peace with sitting on the patio with your mom so you can suggest more ointment if she starts picking at her skin again.

12) Look forward to everything by planning nothing. Let go. Let go. Let go.

Notes from the Afterlife, Advice from Pillville, and Lovelovelove

August 20, 2012 minutes after our arrival, the long drive from Iowa over.

Warning: this might be my longest post ever. But there's love, booze, broken stuff, danger, death, love, and....more, more, more.

I broke a glass yesterday. A heavy tumbler in a slow motion plummet to the tile. The fall, the impact, the shatter seemed to unwind in slow motion. The sound of it too.

That was after I took my mom out for a haircut and barely managed to get her from the car and into the door of the salon. It was a very short walk--a walk that most people would not even describe with the word walk. Enter, maybe, or arrive would describe the track from car to door. I didn't bring the wheelchair. One of those mistakes to which I'll never be able apply the lesson learned because I'm not taking her out again. But we made it. Thanks to the presence of a bench, I didn't have to gently slide her down my leg and sit her on the sidewalk the way C drilled me months ago after the Thanksgiving night blackout drunk face plant.

The hospice nurse came for her regular visit after we got home. My mom was napping by then, looking pretty fabulous in her new haircut. Her pulse/ox was low-ish again, and her blood pressure was really low. 80/60. Yeah. Take a deep breath everyone. My mom is on hospice. She has lung cancer. For the third time. This is the way it is. She was alert and chatty, telling us how her putty-like legs didn't hurt and how she felt just fine. We raised the head of the bed and gave her gatorade. Told her to nap. The nurse and I went into the kitchen and she talked to me while I took the blood pressure meds out of my mom's pill box. She called in a prescription for a steroid. Then we talked about Iowa.

Today is the beginning of our fourth year in Pillville. My mother has said from the beginning that she wanted to go home to Iowa to die. Every time she said it, I told her fine, let me know when so I can buy plane tickets. For months already, we've had tickets for a visit there the first week in October. Yesterday the nurse told me that if there's any chance that my mom might be re-locating to Iowa, that I need to get her there "before the widow closes." That said, my mom ate a hearty dinner last night and walked around the house just fine. She insisted on scooping out her own ice cream--her usual bedtime treat.

Last night I dreamed of Dan. He came back wearing a new jacket, a pair of tinted designer glasses, and tight jeans. He was with a zaftig blonde, whom I disliked immediately. The three of us spent the night in the same house. He slept in my bed. I felt pretty smug the next morning while she slunk around refusing to make eye contact. I was in the kitchen when I heard a certain rhythmic sound coming from the bathroom. When the two of them came out and went directly out the door, I followed them into the street. We were in a big city and a trolley came by. Dan got on. I don't know what happened to the blonde. You could at least say good-bye, I shouted. He raised his eyes to look at me. Fuck you, I said. He shrugged. The doors of the trolley closed and our eyes held as he rolled out of sight.

Dan Paik broke more than a half-dozen glasses in the five and a half years we were together. He broke them at the table, in the kitchen, in the bathroom, and once in the garage. Other than the broken glass our time together was safe and pretty damn beautiful.

Pete arrives today. He's at the airport in Chicago waiting to board his plane right now. The first day of the fourth year of living with my mom is also another sort of beginning. Pete and I became Facebook friends in March. We knew of one another through the T'ai Chi Chih community (he's been a teacher a long time) and he's also a caregiver for his father. After a friend shared a couple of my Pillville posts, he asked if he could have my email address. Over a thousand emails and hundreds of hours of Skype later, we will meet this afternoon in person when he steps off the airport shuttle.

Two dear and trusted friends are coming to eat dinner with my mom tonight. I hope my mom continues to feel well. I hope I remember to eat dinner. I hope I remember to sleep. I hope I continue to trust the universe and that this story keeps rolling along, and that hearts, heads, glasses, bones, and all breakables stay intact for as long as they are able.

Report from Pillville: Read This.

I do a lot of self care. Today it was yoga. And a little drumming. Thank you Yoga-by-the-Sea.

Aid-in-Dying Laws Are Just a Start

I'd pull out a quote or two, but really you ought to just read the article. All of it. When you get to the part about how much Medicare pays for what, have a box of kleenex and a bucket ready. It's sickening and sad. If I were in the mood for a crying jag, I'd just read that paragraph over and over. I ask myself how in the world we got on this train. Well, it's a money train.

I used to be horrified at my mom's lack of personal awareness and responsibility for her health. Smoking: "Something's gotta kill you." Drinking: "I've never been drunk." (Hahahaha) Exercise: "All that moving around makes me seasick." Diet: "There's not a damn thing wrong with white sugar." The list of surgeries and procedures she's had is as long as her arm. Until recently her list of medications was as long as her other arm. She's racked up a tab with Medicare that ought to win her some kind of prize. Except that would be wrong.

As I've witnessed the loss of more of her abilities, as she's lost most of her desire to engage socially, I wonder what loss will be next. Will she go through another period of excruciating pain? If she lives another month, another year, will she be able to walk--even from the bed to the bathroom? She can't hear much even with hearing aids. She can't remember how to crochet, and I don't think she can really read. Today she couldn't think of the name of the bird she likes best.

During her last hospitalization, when a CT scan turned up a new tumor in her lung, the doctor who delivered this news was young and confident. "You'll want to set up a consultation with an oncologist," she said. I restrained myself from shouting, "Are you fucking kidding me?" My mom has been in what the article refers to the "gray zone" for some time. I do not want to extend her time there. And neither does she. Her advance directive emphatically states that she wants no more surgeries. I think it should be a doctor's job to present to a patient like my mom that she has the right to do nothing, to ask if she has an advance directive (I think it's been scanned into the system at the hospital she was at,) and to read that advance directive.

Three years ago I had some pretty rosy ideas about moving my mom in with me for the last portion of her life. I can't say that I regret my decision. I'm tired to the bone some days, but despite my previous post, I don't see a way to quit. Nor can I conceive of a better option. She's trapped. I'm trapped. But the biggest and baddest surprise was the system. The way she'd lie on a gurney for 12 or 10 or 16 hours in the ER before being admitted, the way she'd be pumped full of antibiotics whether or not there was a clear reason for it, the way she'd be completely debilitated upon every return home after lying in bed with only a 10 minute therapy walk (if it was a good day,) the way most of the staff in the hospitals and doctor's offices never seems to know that she's hard of hearing, the way a weak arthritic person in the hospital can't actually open anything to eat it or drink it, the way I'd come home with an impossibly frail person in the evening on a Saturday or a Sunday on very short notice and then have to go out to get a prescription filled. And the pain. Sure, the system as we know it will keep you alive, but they won't prescribe a decent pain killer at a dose that will provide relief because doctors are worried about being accused of over-prescribing.

Yes, there are good things that happen each day. I recognize them, honor them, celebrate them. And I am profoundly grateful for hospice. But mostly the gray zone is not a happy place. Life is eroding here, inch by inch and it's a real and painful thing. More and more, I do not hold this woman with an 8th grade education responsible for the choices she's made about her health. She's the sort of person who worships doctors. "I've always taken my pills just like they've told me." My pointing finger is moving away from her and zero-ing in on that fork in the road with the sign that proclaims life is better than death no matter the misery, no matter the cost.