Report from the Love Shack

Look closely. My head is in there somewhere.

Love changes everything.

And yes, I'm doing a sort of high wire dance--grieving the loss of Dan while falling in love. It's difficult and strange at times. My footing slips and I fall, but I don't hit the ground.

It turns out that going into my fourth year as a caregiver is not so bad. Caregiving is how I met this man I love. He's a caregiver for his father and due to some mutual friends on Facebook, he began reading my blog. Email addresses were exchanged, Skype was launched, and plane tickets have been purchased (he lives in Indiana.)

So I've been busy tapping out emails and looking through my laptop screen into a beautiful pair of eyes. But stay tuned. Soon there will be beach reports, more news from Pillville, and I'll get caught up with all of you. Thanks for the kind wishes

And I think a couple of you were wondering about the dance partner. We're still dancing. We're just not going to tango.

Oh by the way, my mom is doing just fine.

Friday Morning Beach Report

I still have not resumed my regular beach walks, but I did dash to the sand before I went to the gym for my T'ai Chi Chih class. I saw a line of pelicans and a group of circling terns.

And the ocean looked like this:

Report from Pillville: The neurologist, the hospice nurse, and matters of the heart

Things to do while you're on hospice

The hospice nurse comes on Tuesdays. She wears elaborate blue eyeliner and perky pastel scrubs. Somehow this makes me feel all is right with the world. This past visit she noted that my mom's pulse/ox was quite a bit lower than usual and that her handwriting had degraded to an illegible scrawl. This news did not strike panic in my heart. There have been five hospitalizations during the three years that my mom has lived with me. During two I considered summoning the family. There have been eight trips to the ER, two outpatient surgeries, and a myriad of medication changes. I've been at the end of my rope so many times that there's not enough rope left to hang myself--which is to say that I'm ready for whatever comes next. Or that's what I tell myself.

Right now, I'm sitting at the kitchen island in the dark with a glass of wine, listening to my mom moan and shout in her sleep. I don't feel particularly worried about anything, and when I go to bed I will drop into the deep well of sleep only coming to the surface if it's absolutely needed.

On Wednesday I took my mom to the neurologist. She's on hospice now, I told him. She has a new lung tumor. Off most of her meds. She's not in any pain. He asked her if anything was bothering her. She said she was thirsty. He brought her a paper cup of water. He gave me his usual ultimatum. You must have two full days off every week, he said. You can come back to the house to sleep, but you must not see her during these days. You must do this so I do not get a new patient. This speech, delivered in his thick Chinese accent, sounds grave. No nonsense. You must, you must, he says.  I smile and tell him about going to the gym in the mornings. Two full days, he counters. He tells my mom she should enjoy every day, live each one like it's her last. He says that's what he does. He tells us that he's almost met death three times. I know from past conversations that he lost his house and everything in it during a fire and that he barely escaped. I know that he fell in the shower and split open the back of his skull. The scar is impressive. I don't know the story of his third encounter with death. But I believe him when he says he lives every day like it's his last. His eyes meet my eyes. His eyes meet my mother's eyes. He hold us there, reading us. Being sure we understand him. Waiting for us to speak. You can live for months or even years he tells my mom. She tells him that every day she hopes that she'll die in her sleep. He tells her no, that thought is a waste of her time. Just live. At the end of the visit he shakes our hands. Don't come back, he says. Just call me, and I'll write the prescriptions.

In the beginning of our lives in Pillville, there was a podiatrist, a pulmonologist, a cardiologist, a gastroenterologist, a vascular surgeon, a geriatric specialist, an ear, nose, and throat doctor, a dermatologist, and for a brief while, an orthopedist. We are pretty much done with doctors. I think the only one we may see again is the vascular surgeon. If you are sighing sadly right now, please reconsider. Each trip out of the house is a fall risk. That risk includes me. Steadying a wobbly person, even just to get from to car to wheel chair and back again is harder than it looks.

Today I needed to have my mother sign a form. Her signature was perfect. Maybe she could get a job teaching penmanship if there was such a job anymore. But tonight she's shouting nonsense. Our lives here in Pillville are like a yo-yo. Sometimes tightly elegant loops and tricks. Sometimes a limp and tangled failure. At any moment the string can break.

My mom is talking in her sleep again. This time what she said was perfectly clear. "How in the hell are you going to cook a turkey?" I've got that down, Mom, really I do. Of course I don't know that she was talking to me.

In the bathroom at my favorite coffee shop, there is a wetsuit and a towel. I like to imagine that someone runs across the street to surf on their lunch hour. I'd say that's making the most of today.

Where is the @%$&*#$ Beach Report?

I'm not quite sure when I was last at the beach.

As my mom's savings erode,  I've been considering our options. It seems like getting a housemate is the easiest option. Of course, I want a quiet, non-smoking, non-drug using, mostly absent, without furniture housemate who is a very nice, very kind person. The universe sent me someone like that when I needed a housemate a few years back, so I don't know if I'm entitled to another one.

With all of my kids and grandkids here over the 4th of July, there were 11 of us here, but keeping space open for those 2 or 3 times a  year gatherings is a luxury. I need to be practical--and so instead of going to the beach I did a massive clean out of my garage so that I can upgrade half of that space to an almost proper grown-up guest room. I've also cleaned out and painted my laundry room which is right next to the garage so that the garage guests can actually find the sink in there for face washing and tooth brushing. I can now hang lingerie to dry in there somewhat discreetly and it's no longer a complete obstacle course to travel from the kitchen through the laundry room to the garage.

I also painted my front door blue while I was at it.

So that's one of the things I've been doing instead of walking on the beach. And hauling crap to Goodwill. And hauling crap to the household toxic waste drop-off (which does not take everything-- so WTF am I supposed to do with half empty cans of butane and solidified silver polish and medical needles? People have this shit. It's not like it's spent uranium fuel rods. Give me a place to take it dear sultans of city and county waste.)

But before you get all aw hell no, this woman should be walking on the beach, I'll also say that I'm spending a very nice portion of my day communicating with a friend who has become more than a friend. We'd be walking on the beach together except he lives in the Midwest and it's hard to do that from there. It's hard to do lots of things when he's there and I'm here, but there's Skype and email and the phone, and while I have no fresh photos of the beach to share with you, I am well and happy. My mom is doing okay. I'm still going to yoga and T'ai Chi Chih, and dancing. I'm fine. I'm good. I'm better than fine and good. Hope you are too.

Amen.

Divorce Resources

This is kind of a blast from the past.

I have no idea how many readers this blog has maintained from its original incarnation when it was called.......oh, you know. Go ahead, say it in your head if you know it, but I will abide by the restraining order that mandated that I change the name of this blog and refrain from mentioning its former name as well as you-know-who and you-know-who. Not that I ever mentioned them by name anyway. In fact, I wrote under an alias, Ex-in-the-City.

While my own divorce seems like ancient history most of the time, I still take an interest in the subject of divorce. My own divorce was personally devastating, a scorched earth of the soul that blackened my mental and physical health not to mention my finances. I had loads of support and love from friends and family, but the advice was mostly of the stuff-raw-shimp-into-the-curtain-rods variety (you can google that if you are so inclined.) BTW, I did some pretty weird and distressing stuff, but not that. Divorce advice of the more step-by-step practical variety was in short supply. I wandered all around the Internet, never quite finding what I needed.

All of which is to say, here's a LINK.
AND and ARTICLE.

And now back to our regular programming.

love

birds and the beach

Caring for my mom

.
And since a new caregiver greeted me at the door recently with,
"Are you Ethel?" (my 91-year-old mom)
Here' a picture of me.
I think I've survived pretty nicely.
I wish the same for anyone slogging through a divorce and hoping to make it through in one piece.

photo by my talented friend Nomi Wagner. Usually she takes pictures of babies, not babes. Ha.

La Grande Fête

View from my friend Sasha's sunroof

You might not know that I was once a devoted francophile. Once upon a time I even had a blog about my love of France and things French.  Like other bits and pieces of my life, this particular diversion has fallen into disuse since I began caring for my mother. I have nowhere to speak French. No travels on the horizon, no French neighborhood to frequent where I might eavesdrop on a French conversation.

I was supposed to go to the French fair in Santa Barbara today, but just as a friend picked me up to head north, it began to pour here in the land of drought. We felt certain that the rain was just a momentary cloudburst, but the bad weather continued and when the freeway slowed to a stop, we exited and had lunch HERE.  I had the abalone (for some reason it does not seem to be on the menu a bit farther south) and don't regret missing the fair. My friend and I had a leisurely time and drove back just in time for the clouds to open up again.

View outside the restaurant in Carpenteria

I love this stretch of the California coast.  I need to remind myself that my search for a house near the water where I could take care of my mother is what brought me to this exquisite place. I frequently marvel about the twists and turns life has delivered to me since my divorce. How the end of my marriage seemed to be the worst thing and turned out to be the best thing. How agreeing to take care of my mom required me to move and brought me here. How one thing always leads to another thing and at the moment when all that  change is swirling around, we have no idea what the outcome will be. Those clouds might bring a downpour, but in the land of drought a downpour can mean salvation.

View of my patio. When it rains in So Cal, we take photos of it.

Believe it.

Would you believe me if I told you I was sitting in my kitchen eavesdropping on my mom having a conversation with dead people? If you're a regular reader of this blog, of course you would. You might even know that you can click on the labels in the sidebar and read other posts about my mom talking in her sleep/talking to the dead.

Would you believe that the weather app on my iPhone says it's going to be 85 in Margaritaville  tomorrow? That's okay, I don't believe it either. It won't be 85 here, a mile from the sand.

Would you believe that I'm cleaning out my garage and that in the 3 years I've lived in this house, I've amassed bags of stuff that I don't need or want and that probably no one needs or wants? Sure, you'd believe that. You could probably clean out your garage and come up with just as many bags of stuff.

Would you believe I'm falling in love? I can hardly believe it myself. But it's true.

Monday Morning Beach Report

It's beautiful out there today.

The pure white doves were there. Just two. And one of them had a black stripe at the tip of the tail.  I've seen these birds before, but it's not an everyday thing.  

Did you know that pigeons and doves belong to the same family? We have all these negative connotations about pigeons, while doves are symbols of peace. White doves like these are called Release Doves, but they're really a type of rock pigeon.

Here's some Wikipedia stuff:

A release dove is a breed of Rock Dove (domestic pigeon) used for ceremonial release. Release doves are often used to commemorate important milestones of life and offerings of hope at weddings and birthdays and as representing the soul's final journey at funerals.^[1] They are also released at grand openings, sporting events, and many outdoor gatherings.^[2]

The preferred type of release doves are homing pigeons, a member of the rock dove species, and some strains are specifically bred for ceremonial release. White homing pigeons are preferable to ringneck doves (I've had a pair of ringneck doves visiting my patio for the past few months.) for ceremonial release because ringneck doves lack homing ability and may not survive in the wild.

Common wedding release ceremonies[edit]

• the "hand release" in which the bride and groom hold two doves which are then released together
• the "flurry" or "flock release" in which the bride and groom release two birds by hand or from a box and then a larger group of doves are released shortly afterward to join them in the sky.

Common memorial release ceremonies[edit]

• the "spirit" in which a single dove is released,
• the "trinity" in which three doves are released, followed by a single dove representing the soul of the deceased.
• the "12 dove" in which a single dove is first released, followed by twelve doves.

Anyhow, the day has been blessed by birds. 

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.

Malaise de Pillville

Channel Islands National Park, Anacapa

God god, the monologue in my head needs to come out. It's either surgery, a 2x4, or a blog post.

I want to go. Name a place, a thing to be seen, a drink to be drunk, and a friend to be friendly with.  I want to go there, see it and drink it and do it. And I don't want to have to schedule care for my mother. I'm spending all her money, she tells me. She's right, I am. Soon it will be gone and then I will be spending my money.

I stayed home raising my kids for 20 plus years while married to man who was mostly too busy to go see and do though I did forcefully drag us a number of places. When the kids were little, I hated to leave them because we didn't have family near-by to baby-sit and I was wary of people I didn't really know. When they were teen-agers, there were all those teen-agery reasons not to leave them.

I am sick of watching over people. Yes, I know how lucky I am to still have my mother, but you know, a lot of the time she really doesn't seem like my mother. Living with her 20 years ago might have been a blast (minus the cigarettes.) Now, not so much.

I'm just going to list all the things I would do if I could. And, truthfully, I still do some of these things even though I shouldn't, but I rushrushrush to go and come back.

Take a walk at sunrise.
Take a walk after dinner.
Run to the store for any little thing any time I want.
Go out on the spur of the moment with a friend.
Take the kayak out.
Go out to the theatre.
Go to the beach at low tide and look for beach glass.
Go to concerts.
Go to L.A. whenever I want.
Take a trip without having to fly my mother to and from my brother's house (god bless him and his girlfriend) in Maryland. (price tag: 600-800 bucks--yeah first world problem, I know, I know.)
Volunteer for the Channel Islands National Park.
Learn to sail.
And probably most importantly, spend more time with friends who need love and support the way I had love and support lavished on me when Dan died.

Maybe there's some lesson I need to be learning here. Maybe if I don't get it in this life, I'll spend the next one really in prison.

Maybe I should watch another episode of Orange is the New Black and go to bed early.

Oh, and p.s., just for the record, NO, hospice does not provide any actual caregiving. None. Zero. Zilch. Nada.

Wednesday Morning Beach Report

Ghost boat.
And the pelicans on the jetty are still as statues.
Terns circle and cry but never commit to plunge for a fish.
Maybe there are no fish.
A single sea lions leaves the lazy dock life, undulating straight and fast for the harbor's mouth and
passes a couple perched on the rocks.
They are silent. Turned toward one another, heads hung low. For them the water, the birds, the boat, the sea lion do not exist.

Comfort In/Dump Out

I revisited this piece today as I pondered what a friend is going through in a very tough caregiving situation.

How Not to Say the Wrong Thing

And while THIS PIECE is about grieving, try reading and substituting the word griever for caregiver. Caregivers, it seems to me, are grieving incrementally. Caregiving involves weeks/months/years of various traumas large and small, interrupted sleep, medication management, household and financial duties, sacrifices, and life or death decisions--all of which create a mountain of a million griefs.

For some reason I'm surrounded by people who say and do (even more important) the right things. You know who you are.
I present to you an ocean of gratitude.

Today's view from the sand

Population of Margaritaville shrinks from 11 to 4

And tomorrow when the population is halved from 4 to 2, I will begin to refer to our fair habitat as Pillville. Things will be quieter but a lot less fun. No dance parties,  no tag team kayaking, no chocolate cake, and the age range will no longer span 9-90.

Well, maybe I ought to make more cake.

But there's no less joy in some ways. Though these people I love won't be within hugging range, the love continues. They're fun and funny and it's a marvel to see how we interact together in small groups or with the complete contingent.

As for me, I'll be back to walking the beach.

This morning, there were hundreds of  feather's tangled in the sea weed. And while I now easily recognize the call of terns who have been quite active of late, I have no idea if these feathers belong to them or if those lost feathers signify disaster or a new stage of development.

Anyone know?

Report from Camp Margaritaville

This is what my kitchen looks like every morning as I make lunches for the grandchildren. They help too, but we start the morning with them on one side of the island eating breakfast and me on the other constructing lunches. Pleaseohplease let me have a few years where I make lunch for no one, I wrote to a friend the other day. But really, this week has been fun. Camp has been from 9-4 so I've had time to think. Uh. Maybe not. I think I've mostly been buying more food. Added to my mom's mainstays of white sugar, butter, yogurt, jam, coffee, half and half, and vanilla ice cream, we now cannot run out of bread, cheese, milk, ham, or grapes. I have made ridiculously simple dinners. Bacon and eggs, quesadillas, pasta, pizza. I would now like to live in a box of mixed greens with homemade vinaigrette. Or maybe I'd like to marry a French chef and get fat. One or the other. I can't decide.

Family is arriving for this holiday. All my children will be here. People will be sleeping in the living room and in the garage which serves a a guest room since there's plenty of room out there.

We have pretty angst-free relationships with one another. Lovelovelove is pretty much the way things go. People are considerate and kind. There will be kayaking, and board games, walks and naps, and getting caught up. One of us is looking for a new apartment, one is falling in love, three have relatively new jobs, one has just graduated and is looking for a job, and the grandkids are always surprising us with something.

Hello from Camp Margaritaville. Population:11 Age range: 9-90.