I've decided that the opposite of learning is forgetting.
Several mornings a week, as I sit at the table and drink my daily vitamin shake, my six and a half-year-old grandson gives me a memory test. Sometimes he shows me each of his little die cast airplanes and sees if I remember the name of each. He has dozens, and he knows them all. Sometimes he sets up his dinosaur models and tests me on the names of each of those. Each time I remember a few, but I forget the names of most from day to day -- even though he names each for me, speaking very clearly and explaining the distinguishing features of each.
As he learns, I forget.
On the other hand, as he learns, I also find out about all sorts of bits of information that I didn't know and didn't know that I didn't know. Of course, I forget most of it, but, at the time when he is explaining to me that whale sharks eat plankton, I find it interesting, both that I never knew that and also that it doesn't matter that I never knew that.
I forget. He seems to remember everything, and I think it's because being home schooled enables him to pursue learning about what interests him, whether it be tornadoes, fossils, war planes, or road construction. And, at the same time, he's learning that math, science, history, reading and writing are necessary to his understanding of what interests him.
His mom posted a unique perspective on what she has discovered that is important for kids to learn on her own blog.
We are definitely a bunch of avid learners in this extended household. Unfortunately, I am forgetting as much as I'm learning.
Hopefully, my son, who is on a learning curve regarding moving this blog to WordPress, will soon finish the job so that he can then forget it.
Soon. My new look will be up soon.
And, with it, a new photo of me, which my daughter is going to take for the little blurb about me that is going to appear in Vicki Howell's upcoming Craft Corps book.
And you thought that I was just a blogger. Live and learn. Except for me. I live and forget.
The ice storm hit us Thursday night, knocking out electrical power for a while. I didn't realize how bad the storm had been further north until I set out for Massachusetts this morning with the car radio reporting on the tens of thousands of New Yorkers still without power.
I drove across the swaths that the ice storms devastated, paralyzing the trees along the way with thick crystalline bonds. I wished that I hadn't packed my camera (somewhere in the back of my car that was loaded to the roof with boxes and bags of my life's accumulations, including my desktop, printer, and monitor and more cables than I could possibly have use for).
The landscapes I passed looked like stage sets for the Snow Queen or a scene from some alien planet. When I finally stopped at a rest stop, it was closed (no power). The other rest-stoppers were as unwilling as I to use the outdoor port-a-potties in the 15 degree weather. But many of them went back to their cars for their cameras to capture the bushes outside McDonald's, their thickly iced branches arched over like so many alien tentacles. The sun was out and the ice looked lit from within. I had no idea under which layer my camera was buried, so I passed up the chance for some amazing photos.
The news on the radio reported that some people will be without power until Monday. Several towns had curfews to keep people from driving over icy roads at night
It's a little chilly here at my daughter's, even though the heat is on. We have to figure out how to get more heat into my part of the house. I love it cold when I'm sleeping, but at the moment, I've got cold feet blogging.
I am worried about my (92 year old) mom -- not because of the cold (and my brother has a generator in case of power failure). I'm worried because the dementia is getting a lot worse, and she cries and wails almost all of the time. My brother doesn't want to sedate her, which seems to be the only thing to do at this point, as far as I and the doctor are concerned. I can't tell how much pain she's in, but when she moans, "oh..oh...oh....oh.." and seems to be in great distress, I can't help wanting to give her something more than Tylenol to relieve whatever it is, to ease her brain as well as her body.
But my brother won't let me, believing that there is no drug that will make her feel better but not knock her out. There might well not be. But I'd rather knock her out, take the pain and anxiety and fear from her face, give her some peaceful sleep, a respite from the demons of decay.
I can't stand to have to stand by and watch her suffer. And that's one of the reasons that I'm here and not there.
Our doctor ordered a nurse to come in once a week and see how's she's doing. My brother is objecting, for reasons that are only relevant to him and his demons.
Well, it ain't over til it's over, and I might have to get her out of there. But if I do, I will have to put her in a nursing home, and I don't think that she would survive very long there.
A former colleague -- one known for his series of extra-marital affairs -- once told me that he could live with guilt.
It's the first snowfall here in Massachusetts. If I were at the address that I am leaving, I never would have gotten out to enjoy the day. My daughter's nuclear family went outside to play in the snow (and clear off my car). I just hung out, took some photos, and generally was delighted to be, finally, in the midst of laughter and play.
I will be driving back to my mom's/brother's tomorrow. It's supposed to be a nicer day -- for a drive, that is.
At least I didn't fall down and break my hip, like fellow elderblogger Darlene of Darlene's Hodgepodge. It might be cold here, but at least I'm comfortable, unlike Darlene who lives in warmer Arizona but is still in rehab. Mend soon, Darlene.
I feel as though I'm on vacation in my new space. I'm not totally moved in yet, and there will be a lot of organizing once I get everything here. But, for now, it's slow, relaxed days and evenings -- which is good in some ways and not so good in others.
It leaves me time to think. About my life and what kind of person I've been.
The truth is, in the past, I was neither a good daughter nor a caring sister. I was not a particularly good spouse or mother, either. I had my own ambitions and my own dreams, and I always managed to fit them in, even at the expense of others. I guess that watching my daughter with my grandson reminds me of all the things I never did for my kids as they were growing up.
Maybe these feelings are prompted, now, by my guilt over leaving my mother in my brother's care, of forcing my brother into the position of having to figure out how to give/get her the care she needs or face legal consequences. If assume her guardianship, I will have to put her in a nursing home, and that will break all of our hearts.
Cold comfort.
Until I hear my grandson giggle or wake up from a restful night's sleep. I can live with the cold.
In a way, it's a relief. I don't have to go through all the complex strategizing to get him to compromise -- only, each time, to come up against a stone wall. Actually, it's more like being dumped into a vat full of jello. Either way, I get nowhere.
I'm out of energy and stamina. I give up. He can take care of our mother any way he wants.
He has arranged with a female musician friend of his to come and stay with our mother. Every once in a while. No set schedule. I've met her. She's nice enough, and, as far as I can tell, my mother likes her.
I wanted him to hire someone from an agency who is trained to deal with dementia patients. That is, who knows what kind of patience is necessary to deal with someone who pretty much lives in her own personal reality, which sometimes overlaps with a more objective reality -- but even then, with her own emotional twist. But he wouldn't agree to that.
So, I give up, and I'm intellectually and emotionally distancing myself from the situation. I will come in once a month to visit my mom. I hope that we both can take the emotional stress. It's almost better if she completely forgets who I am.
I'm hoping to be completely out of here and out of primary caregiving by the end of the year. It seems like forever.
My mom fell down. I wasn't here. I was at my daughter's, when my mother tripped and fell. My brother was with her; he said she lost her balance (which she does occasionally) and fell in his kitchen. She has a big bruise on her bad shoulder. And, she says, everything hurts.
When I got back here the day after she fell, against my brother's wishes, I called an ambulance take her to the hospital. She couldn't walk unless we held her up, and she was in a great deal of pain. My brother wanted to take her to a walk-in medical office that has an X-ray machine; we've taken her there before. But I didn't want to take the chance. Suppose she had broken something.
The hospital X-rays showed no broken bones. A CAT scan of her head showed no pathology. It did show "volume loss," however. (Like that's a surprise??!!) The attending doctor wanted to keep her at least overnight because she was in danger of falling again. He wanted to hydrate her and give her a sedative (since she was agitated) and some tests, including blood. If she had stayed overnight, she would be been eligible for Medicare in-home help. My brother insisted on taking her home. So, we did.
She slept soundly that night and way into the day. Then she ate and went back to sleep.
And it has all gone downhill since then. She woke up at 3 a.m. this morning, incoherent except for crying that she wanted to go home and that everything hurt. I gave her an arthritis strength Tylenol, which seems to work well on her pain, and eventually, she went back to sleep. She repeated that scenario at 8:30 a.m. She gets up to eat something, and then goes back to sleep. While she's up, she's barely communicative.
The attending physician in the hospital gave me a script that says my mom needs one-on-one care 24/7 because there is a great probability that she will fall again unless someone has an eye on her constantly. .A nurse is coming tomorrow from the county's Adult Protective Services to evaluate her condition and her living situation. That is part of my strategy to put as much pressure on him as I can to hire someone to come in and help with her care while I'm going through my move -- and, of course, after.
I'm standing by the kitchen window, looking out at the trees and the pure blue sky, drinking hot chocolate and eating challah smeared with Smart Balance. My daughter's voice drifts in from the living room, where she is reading a book to my grandson, who is sprawled on the couch nursing a fever and a cold. The book is one I bought her when she was a child -- "Grandma and Machek," about a Polish grandmother who tells her granchildren the story of her living in Poland as a little girl and how her friend Machek (who became their grandfather) outwitted a wolf. They are doing a home school unit on making a family tree, and we have just finished looking at two fading photograpsh of my 1940s extended family -- one that includes more than 50 people. I showed him the ones who came over through Ellis Island. He is interested in every detail.
Such is my life without care(giving).
But in a few minutes, I will be leaving to go back to the turmoil of the other part of my family, where my mom, who is in her nightgown day and night, needs better care than she is getting when I'm not there.
I visited a nursing home yesterday that's located 1.3 miles from my daughter's house and has a secure dementia unit with an enclosed outdoor courtyard. The bedrooms are big and sunny, with room for personal furniture etc. Unless my brother hires someone to come in and help with my mom during both this transition of my leaving and my actual departure, I will fight him for her guardianship and power of attorney. She deserves better than she gets from him; and I just can't give any more. I could see myself volunteering at the nursing home a couple of mornings a week and visiting her several days a week, at least until she gets acclimated.
My brother wants her, but doesn't know how to give her the kind, patient, consistent care that she needs. I just want to see her get good care. And I need to take care of myself for a change.
And that's how it is, as I go from this place of peace to that place of war. It never had to be this way, but that's how it is.
Today was supposed to be my official move day, but I'm bogged down by stuff and responsibility.
So, instead, the move has become a slow one as I sort and pack and dispose of. At the moment, my car out in the driveway is packed with household stuff that I will take to the Salvation Army tomorrow. And then, next week, I will pack the car with another load that I will drive out to my new space at my daughter's.
Actually the slow move is working out OK because I just can't shake my responsibilities to my mother, especially since she has suddenly become very weak and wants to sleep a lot. And so I spend a week here taking care of her and then drive out with my packed car to spend several days setting up my space and playing with my grandson. The drive out is like a mini-vacation in and of itself -- I have several hours all to myself to think and surf between NPR and country western music stations. Sometimes, I even sing out loud, moving my shoulders to the steady beat while cruise control takes over.
Stuff and responsibility. I'm carrying a lot of baggage.
After the death of her father, Melissa Volker discovered some uncanny similarities between her photos and the poems in a collected, unpublished work of his.
As a tribute and a tether, she brings them together here -- a poignant sharing meaningful to parents, children, those who have lost, those who love.
Word and pictures. Together a common vision.
The above is the description of my daughter's book, which she is publishing online through Blurb.com.
The title of this book of her dad's poetry and her photos is the title he gave his collections of poems: "Seeworld: visions from the wonderground," and you can get a preview of it here.
The poems are as much for children as for adults. They are filled with unique images that reflect the simple wonders of nature. The photographs visually capture that simplicity and that wonder, adding to the delight of the poems themselves.
"Seeworld" would make a great holiday gift for any family that treasures the special relationship that a daughter can have with her father.
(Of course, this proud mama just can't resist plugging the publication.)
My 92 year old mother is up late since I am watching the election returns. Obama has won and is about to speak.
"Look, Mom,"I say. "That's the new president of our country."
I'm never sure she hears me and/or understands. But this time she looks hard at the television screen, taking in the crowds, the shouting, the man.
"Is he black?" she asks.
"Yes," I answer, explaining (now that she seems to be paying attention) that his mother was white and his father was black, and he is now the president of the United States.
She continues to look intently at the television screen as Obama begins his acceptance speech.
"Can you make it louder?" she asks and moves to a chair nearer the tv, where she sits and listens and watches until he's done.
I'm not sure what it all meant to her, but I sure know what it all means to me. We have a truly democratic leader as president.
This morning I explained to my son why this is so historical. Why it's a big deal that an African American could be President. To do so, I had to introduce slavery as part of our history (mind you, he's only 6 and in first grade)...he askes SO many questions. "Why did men take them from their homes?" "What do you mean, can you explain more about how they were treated badly?"
And as I explained the best I could in appropriate terms for a 6 year old, but also without sugar-coating the truth, I saw tears fought back in his eyes. Our SIX YEAR OLD felt the injustice those men and women must have felt. Our child felt the horror and sadness of it. "Just because of the color of their skin?!"
He was aghast and stymied. Disgusted and outraged.
The only way I could make him feel better was to assure him that in the end, other men felt the way he just did. Which led to teaching him a bit about the civil war, Abe Lincoln and Harriet Tubman. It helped a bit, but there was no totally shaking him from the sadness he felt to learn how human beings had been treated.
I told him I was proud that he cared. Proud that it mattered to him. And that in the end, that is why it was historical today.
Don't tell me kids can't get it. And don't tell me a kid can't help direct his learning. Homeschooling rocks!
And my son b!X parties in Portland, missing his Dad, who would have been overcome with joy at the reality of President Obama.
As I walk out of their little "office," where I had been using their desktop to do some late-night catching up on the Scramble games that I play with my friend in Saratoga, I come upon my daughter and son-in-law engrossed in their laptops. He's checking up on the latest presidential campaign issues, and she's going through her photos to find images that match the series of nature-based poems her father wrote. The television remotes lay on the couch where they were tossed. The only sound is the rustling of pages and the tapping of keyboards.
It's a telling scene for me. We have, as a family, embraced this technology for all that it offers our hungry minds. We are constant learners, thoughtful and curious. The Internet is our classroom.
And it is becoming so for my grandson, who is being home-schooled. He not only has his own XO Laptop; with his mom's help, he uses their desktop to look for and print out images for learning projects, such as identifying animals and their habitats. The world map that hangs from the mantle in their living room is a constant source of questions on his part that he knows have answers somewhere in the great net-out-there.
At the moment, I am without a laptop, and I find it a great inconvenience. My old one has a major problem with the port the power cord goes into so that the machine turns off as soon as it is turned on. Now it doesn't even start because I fiddled with it once too often.
I also recently caused the crash of the brand new laptop that I inherited from my once-husband. I guess I got too impatient with Vista, and I am convinced I want to stay as far away from that OS as I can. My plans are to have Vista uninstalled and have a different operating system put in. I'm even thinking about Linux.
It's interesting how quickly we have all adapted to this technology. I'm planning to have my laptop repaired before I move into my digs at my daughter's and son-in-law's, where wifi rules.
I'm blogging today from my daughter's computer, sitting in her comfy desk chair and lumbar-wrapped in an ACE bandage, while my grandson is upstairs in bed, fighting what looks like the flu (poor little guy).
He seemed fine yesterday, when we all went out and picked out a bed and mattress for me to buy for my new digs.
Today I'm feeling in between worlds as I mentally begin my re-entry into the world I have to leave. I have set a "move" date of November 13 -- an arbitrary date, but I like the number 13 since most people don't.
But for the moment, I'm enjoying the quiet, the peacefulness, the loving acceptance that suffuses this home of my daughter and son-in-law and grandson. This home that will soon be mine as well.
Before I leave, I will listen again to the video below -- a rousing reminder of the freedom to come. Listen to "Les Misbarack."
Over the years, I've accumulated a following of various catalogs. Clothes, especially, but there are other kinds as well.
But the catalog I got in the mail today is one of a kind in my long list of order offers. And I don't know how or why they got my name. I can't help wondering if someone put my name on their mailing list just to annoy me.
I mean, this is what this slick catalog is selling:
-- a 20 CD set of lectures entitled "The Hand of God in the History of the World."
-- a read-aloud series for children: "How God Sent a Dog, Stopped Pirates, ande Used a Thunderstorm to Change the World."
-- a book: "Passionate Housewives Desperate for God."
WTF!!! I guess their marketing guru never got a look at the sidebar of this blog.
Oh, and then there's "The Wise Woman's Guide to Blessing Her Husband's Vision."
Now I'm grinding my teeth!
In between all of this, pages of miltary, detective, construction, outdoor, and battle costumes and tools for boys. And what do the girls get? Equal pages of cutsy dresses and dolls, baking sets and aprons, tea sets and crochet gloves AND a book on "How to Be a Lady."
Groan. Nausea. Twitches.
And. AND. This, and I quote from the blurb on "Return of the Daughters":
For the first time in America's history, young ladies can expect to encounter a large gap between their years of basic training and the time when they marry...if they marry. Now Christian girls all throughout our country are seriously asking: What's a girl to do with her single years?
This documentary takes
... viewers into the homes of several young women who have dared to defy today's anti-family culture in pursuit of a biblical approach to daughterhood, using their in-between years to pioneer a new culture of strength and dignity -- and to rebuild Western Civilization, starting with the culture of the home.
I have to admit, the writing in this catalog is good, the presentation skilled. And that even makes it more scary. I am not linking to its website because I don't want to give it any additional visibility.
Finally, the back cover:
A Creation Celebration. ... each episode will build your appreciation for the brilliance of God's design and will teach you how to dispel evolutionary myths...
Evolutionary myths!!!
This is one catalog that I'm going to feel great pleasure in throwing into the recycle pile. That is, after I rip off the address label and stick it in the mail with an order to take my name off their !@#$% list.
For a while before his death in April 2008, non-blogger Myrln (aka W. A. Frankonis, i. frans nowak), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter, who has salvaged his published, performed, and none-such writings, continues to send me some to post posthumously.
Last Day
Last day means overs
(but not the do-overs of child games)
Mother ocean left soon behind
return to land’s hard facts
imminent.
Overs
hang in the air
like haze
hiding blue sky
and eyes.
Back #1: It was just a matter of time, I guess. Several nights ago, as I tried to lift my mother's legs back onto her bed, I felt as though someone shoved a knife into the right side of the lower spine. It was a long night for me, as I painfully made my way to a chair, only to find it hurt too much to try and sit. Lots of Excedrin Back and Body later, I'm relatively OK as long as I don't twist sideways or make a sudden move. I have a long history of problems with the right side of my body, including developing "drop foot" on my way to Harvard's first BloggerCon five years ago. And it's been all downhill from there.
Back #2: Despite the above, I wrapped an Ace lumbar support belt around myself, put on the cruise control, and drove out to see my daughter and family, who, I knew, would give me some TLC -- which I needed for more reasons than my out of whack back. Luckily, I had left my new quarterstaff there, and that surely came in handy for limping around the yard.
[Side note: Ronni Bennett has a section of her blog dedicated to the "Quarterstaff Revolution," and I will be sending my photo to add to the growing collection.]
Back #3: Last week, I took a little trip back in time and finally got together with my college roommate and her husband, who live about a half-hour's ride from here. Both she and her husband were good friends of mine all through college. She and I were the same size and coloring We shared a room and later an apartment right through grad school, and we also shared our wardrobes. She is still slim.. Our lives are about as opposite as possible these days, but the memories of all of the crazy college experiences we shared (including driving down to Daytona Beach for Spring break with three of our male classmates) are still ties that bind.
Back #4: Thanks to the Bush regime, this country is so democratically backward that we can only hope that the new president will have the strength and stamina to haul us back to where we belong. The latest indignity is PBS stalling about widely airing Torturing Democracy. It is, however, being aired by individual public stations, and you can watch it online.
How about doing something really nice for b!X, whose recent employment ended when a wall in the old building where he was working fell down, revealing a substantial lining of black mold. That was sort of the final obscenity in a work environment that had gotten steadily worse over time.
B!X birthday is October 25, and when I asked him what he wanted, he responded by saying that he wished all of my friends would by one of his photographs, which he has for sale here. They come 8X12, matte finish, unframed, and printed by a professional photography shop.
This is "Broken Circle," one of my favorites. I even bought a copy for my new living quarters:
If you don't see any you like in his virtual storefront, you can go to his Flickr photostream list of subjects and pick one of those -- for example, from his cemetery series , or his green door series, or his central east side (Portland) series. If you want one from there, just let him know and he'll move it to his storefront so that you can buy it.
It's never a great time to be out of a job, but this time it has to be the very worst.
Actually, if you know anyone who owns a bookstore and needs someone who can do just about anything that needs to be done -- from ordering to inventory to cataloging to shipping to stocking shelves -- give them b!X's web site, where he posts his resume (of sorts) under "about," which I quote here, just in case.... (He says he's even willing to relocate.)
About The One True b!X
An eleven-year resident of the Portland of Oregon, born nearly forty years ago in upstate New York, he is a devout agnostic and misanthrope who aspires to be an at least passable rationalist. He believes that cynicism only results from first believing people are capable of better and then repeatedly being proven wrong.
If events were pictures and emotions were sounds, his memories would play as silent movies.
•
When he was very little, he learned the all-important lesson that adults don't always know what the Hell they are doing, when he revealed to a number of grown men that the reason the ramp on the U-Haul truck his father was using to move out of the house was not steady was because they had failed completely to attach it properly.
During his senior year in high school, in response to an uncooperative student newspaper, he published several issues The Myra Stein Underground Press (named for an infamous teacher who one day disappeared without explanation), which despite being an anonymous publication he later saw sitting in his file on the guidance counselor's desk.
His brief college career in the main was marked by the eruption of controversy over the playing of a bronze Henry Moore sculpture with percussion mallets, a debate which landed him in The New York Times and ultimately led to him writing (the night before it was due) a well-received term paper on social drama.
Prior to moving to Portland, in 1995 he helped organize the S. 314 Petition, one of the first large-scale Intenet petition efforts, which sought unsuccessfully to prevent passage of the Communications Decency Act, although it did yield him an appearance in Rolling Stone.
Shortly after moving to Portland in 1997, he become co-owner (and then sole proprietor) of the Millennium Cafe, which he then ignominiously proceeded to run into the ground, but not before holding two successful July 4th events at which people read aloud the Declaration of Independence.
From late 2002 through late 2005, he published the critically-acclaimed Portland Communique, an experiment in reader-supported independent journalism whose departure is still lamented by some today, although likely not by the people who falsely accused him of taking bribes in exchange for coverage.
Sometime in 2003, he discovered The Finger, a zine apparently published by Swan Island shipyard workers during World War II, which he made available online and for which he has perpetually-delayed plans to make available as an on-demand reprint.
In early 2006, he founded Can't Stop the Serenity, an unprecedented annual global event consisting of locally-organized charity screenings of the Joss Whedon film Serenity to benefit Equality Now, which to date has raised more than $200,000, making it far more important than any of the many other Whedon-related fan efforts or websites for which he's been responsible.
Late in the Fall of 2007, he helped launch Fans4Writers, a grassroots effort to support the Writers Guild of America in its strike against the Alliance of Motion Picture and Television Producers, although he was involved only long enough to get the website up and running.
He no longer is employed at The Great Northwest Bookstore, and would not necessarily object to working at another independent bookstore if a full-time opportunity presented itself, and in fact might even be willing to relocate for it.
•
He neither bikes nor dances nor dates nor drives nor drugs nor swims. He does, however, drink. Oddly, he no longer smokes. He is a life-long resident of Red Sox Nation who, when not wearing his baseball cap, enjoys wearing a porkpie.
We drove into the sun, with a pale moon still high in the sky, and we brought our father/grandfather/father-in-law/once-husband to the place he asked to be laid to rest.
The morning wind whipped around us, and the tide was beginning to flow, as we searched along the deserted beach for a place to leave him to the sea.
His daughter prepared the place.
His son placed him in.
Until that point, the small waves inching up the shoreline were a good ten feet away. Then suddenly, before he filled the hole, one wave reached and carried most of him away. Ah, we all thought -- the sea is as eager for him as he was for the sea. It was odd, though, that none of the other waves had come up as far.
After they filled in the sand and were ready to place the flowers on the spot, another single wave obliterated all traces of where he had been placed. And so the flowers were left on the shore line and petals tossed into the spray.
Well, I'm not really going fishing, but I am going to the ocean, along with my son, and daughter and her family. We will be carrying out my once-husband's last wishes and having what will probably be our last chance to all be together for a while.
This will be the longest time I've ever been away from my mother since I started caregiving in 2000. She will be in my brother's care for the next six days.
And when I get back, I will begin counting down to my own "move on" day.
For a while before his death in April 2008, non-blogger Myrln (aka W. A. Frankonis, i. frans nowak), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter, who has salvaged his published, performed, and none-such writings, continues to send me some to post posthumously.
He's waiting for me on the steps to my new door to a new life.
The space for me at my daughter's is ready except for the painting. I am conflicted about leaving here, but, after eight years of the increasing burden of caregiving, I just can't do this any longer.
When my mother was my age, she was going on cruises with my dad, surrounded by couples with whom they had been friends since their dating days. My dad passed away in his early seventies. I want to be able to have some sort of life before my number comes up.
I imagine being able to come and go as I please, being able to sleep through the night, sitting outside on my steps in the morning and having a cup of tea in the sunshine. Here, I am not only sleep deprived; I am deprived of all of those small things that become big things when you don't have them.
I imagine being able to get off my anti-depressants, walk my way off my cholesterol med, throw away my muscle relaxant.
It's come down to my life or hers. My brother, who has control of everything here, will have to figure out how to get her the care she needs so close to the end of her long life.
I don't know how long my life will be. I can't give away what's left. Not any more.
And waiting for me with anticipation is my grandson, whose loving energy will help me overcome the guilt I will bring with me.
For a while before his death in April 2008, non-blogger Myrln (aka W. A. Frankonis, i. frans nowak), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter, who has salvaged his published, performed, and none-such writings, continues to send me some to post posthumously.
Four days with my daughter and family put me in another reality, one suffused with conversation, laughter, play, sunshine, and time -- things I don't have here, where the insistent needs of a 92 year old woman hold just about every moment hostage.
I was able to sit in the dappled shade and finish the mystery novel I started to read last month. I was able to relax enough to ease the spasms I've been getting in my back from an out-of-place rib. I sat on the floor and with my grandson and his various construction, rescue, and police vehicles. I slept like the dead.
I never got to post a new piece on the education issue. That will have to wait until next week. As for now, I'm struggling with re-entry.
Well, I think the clearest statement of what I value is found in the preamble to the Constitution. There is nothing in the preamble to the Constitution which defines the purpose of the United States of America as remaking the world in our image, which I view as a fool's errand. There is nothing in the preamble of the Constitution that ever imagined that we would embark upon an effort, as President Bush has defined it, to transform the Greater Middle East. This region of the world that incorporates something in order of 1.4 billion people.
I believe that the framers of the Constitution were primarily concerned with focusing on the way we live here, the way we order our affairs. To try to ensure that as individuals, we can have an opportunity to pursue our, perhaps, differing definitions of freedom, but also so that, as a community, we could live together in some kind of harmony. And that future generations would also be able to share in those same opportunities.
The big problem, it seems to me, with the current crisis in American foreign policy, is that unless we do change our ways, the likelihood that our children, our grandchildren, the next generation is going to enjoy the opportunities that we've had, is very slight, because we're squandering our power. We are squandering our wealth. In many respects, to the extent that we persist in our imperial delusions, we're also going to squander our freedom because imperial policies, which end up enhancing the authority of the imperial president, also end up providing imperial presidents with an opportunity to compromise freedom even here at home. And we've seen that since 9/11.
For a while before his death in April 2008, non-blogger Myrln (aka W. A. Frankonis, i. frans nowak), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter, who has salvaged his published, performed, and none-such writings, continues to send me some to post posthumously.
This is one: Notes from “Nepperhan Days” his self-tale:
Immigration experience of body and soul/heart as human condition. We are all immigrants. A family story of three Italian generations: those who left Europe, then the first-born in America and thus the first to be assimilated, then the second –born generation which rejects the experience of the 1st two before coming to realize we are all immigrants of a kind and thus come to anew place in the heart: immigrants to acceptance, love and pride in ancestry.
For a while before his death in April 2008, non-blogger Myrln (aka W. A. Frankonis, i. frans nowak), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter, who has salvaged his published, performed, and none-such writings, continues to send me some to post posthumously.
This is one.
SONG FOUND IN A DORY BOBBIN IN THE BAY IN KANKANEMONIOUS GULCH
Enter an old man who moves to a bench and sits. He wears a heavy topcoat, a suit, vest, old shoes.
Very deliberately, he begins going through his pockets and removing the contents.
Coat: one glove, a crumpled handkerchief, a cigar butt.
He removes the coat.
Jacket: one key, a stub of paper, a broken pencil, an empty matchbook, a red balloon.
He removes the jacket.
Vest: one paper clip, a creased snapshot.
He removes the vest.
Trousers: a second crumpled handkerchief, a penny, a hole in the pocket, a stone.
He sits, moving his hand from object to object without touching any of them.
Sometimes these days I think the only way I have stopped myself from strangling my brother and/or my mother is by picking up a crochet hook or a pair of knitting needles and going at it with a new hank of yarn.
I realized recently that I am a "process" craftsperson rather than a "product" one. I have at leave five projects started that I've set aside because I got to points in the patterns that required a lot of attention to detail. So I've started a lightweight crocheted afghan for when I move in with my daughter and family. It's the same stitch over and over again -- striped using two related yarns. There is something about the rhythm of the hand movements that's mesmerizing, mentally relaxing. I can sit in the middle of a raging familial storm and block it out with the repeating stitch mantra. It's certainly better for my health than drinking.
But that was all before I moved my mother and me in with my brother. That was before my mother needed 24/7 care. Then I had the mental energy to focus on the details of form.
Now I just need something to do with my hands, something to intrude between my world and my brain. Something that I can easily put down if I have to.
So, it's
Yarn over hook.
Insert hook in the next stitch to be worked.
Yarn over hook.
Pull yarn through stitch.
Yarn over hook.
Pull yarn through all 3 loops on hook ..........
from the (free) magazine for dementia caregivers published the Alzheimer's Foundation of America (careADvantage, Summer 2008 -- PDF) – an article by Richard Taylor, PH.D., a retired psychologist who was diagnosed with dementia.
When dementia enters a person's mind, when it enters dynamics of a family – of a husband or his spouse – how we communicate, why we communicate should/will shift.
[snip}
It should shift away from mutual understanding and agreement and toward staying connected, giving and receiving love, supporting each other in ways we never thought we would have to do. It gets less and less about about the facts and more and more about feelings. It moves (quite unfortunately) from looking towards tomorrow to looking back at yesterday. (Today just gets lost!)
As the disease progresses, the burden of adapting, of figuring out what the other person wants/means/understands shifts more and more into the minds and hearts of caregivers.
About seven years ago, when my mother was first diagnosed with dementia, I started reading and researching what would mean for both of us. Slowly but surely, I became the mother and she became the child. That was something to which it was really hard to adjust. Now, she calls me her sister. I don't try to correct her. It really doesn't matter. I'm her primary caregiver, and it's me to whom she looks for comfort and safety.
That's why my stomach is in knots at the thought of leaving her with my brother, with whom I can no longer share her caregiving because we disagree on so many things of importance in every day life. I can take her with me, but he has POA over her finances. Control is a big issue.
I don't know how he thinks he can take care of her without me and without paying to bring in qualified and caring help.
This is what today was like for me (other days, it's giving her a shower, changing and washing her bedding, planning and shopping for her food, doing her laundry, cleaning her floors [which I don't get to nearly often enough]):
11 a.m. - 2 p.m.: My shift. Mom slept until noon. When she got up, I made her lunch (of tuna and egg salad, which I made the day before during my evening shift and which she usually likes). She at a half of her sandwich, a plum (which, of course, I had to peel for her), a cup of her fake coffee, and a couple of cookies. I gave her her antidepressant and some Tylenol because her shoulder was hurting. I wrote down the meds I gave her on the log sheet on the frig. I noticed that she had a sore in one nostril, so I put some salve on it. By 1:30, she wanted to take a nap. When my brother came to take over, I said I thought we should take her to the doctor. He responded with a detailed explanation of what he thought the sore was, and I couldn't get him to agree that she needed to see a doctor. Not wanting yet another argument, I didn't make the appointment.
2 – 5 p.m: My free time. I went outside to water my parched tomato and other plants, and then I harvested some basil and parsley for freezing. I killed a lot of Japanese Beetles and had to throw away two of the tomato plants because they were totally dead. Then I went inside and sorted through stuff I could give to the Salvation Army. I answered my email, ate a bunch of delicious cherries, played Scrabble.com with a friend in Saratoga, and did a search for where I could take my broken electronic stuff for recycling. It turned out that there will be a special day in this town where I could do that. I shared the information with my brother.
My brother's shift. As far as I could tell, when she woke up, he gave her more to eat because she was hungry, and she went back to rest. He put the tv on and sat there tapping on his laptop. I stopped in at one point to use the stove to boil potatoes for salad. I came back to check the potatoes around 4, and he asked me if I made the doctor's appointment. I said I didn't because he didn't tell me that he agreed that I should do it. He blamed me for misunderstanding, and so I called the doctor, who, it turns out is tomorrow and all next week.
5 p.m. - 8 p.m.: My shift: I made chicken and mashed potatoes for supper. She sat in her recliner in front of the tv and ate some cantaloupe while I watched the news from the kitchen. My brother walked in and started to check what else was on television. He does this often, and I reminded him that it was my shift and everything was fine and I was making her supper and we were watching the news. He decided that she should have some root beer with her dinner (I would have given her juice). She ate her whole dinner and then I took her outside for a while to walk a little and then sit. While we sat, I cut and filed her nails. We went back in for dessert. She was just finishing her fake coffee and cake when he came back in – poked around in the dish drainer and chastised me for putting a fork in the place designated for knives. (I have learned just to say "umm" and not try to argue because it upsets my mom) I knew that she was getting a little sleepy, but she was sitting calmly watching the tv with me while I made some potato salad (which she likes), so I left well enough alone. He decided she should take her laxative and should lie down. So, he gave it to her and took her into her bedroom; but she sat up right away and started fiddling with the quilt. He started to be curt with her, which got her upset. I asked him to leave because it was my shift anyway. He finally left, and I had to sit down next to her with my arm around her for more than 20 minutes to calm her down. During that 20 minutes, I had to help her up to the bathroom three times. Her stomach hurt but she couldn't do anything.
She finally agreed to lie down and rest.
8-11 p.m. My brother's shift. My free time. I started this post, packed up some boxes of my stuff, fed the cat, got myself ready for bed, and watched my favorite summer tv show: Burn Notice. When I went down to start my shift, my mom and my brother were laughing and talking. She is fine when her caregiver is paying positive attention to her. She has agitated meltdowns when she is spoken to harshly or chastised for doing things wrong.
It is now 12:30 a.m. When my 11 p.m. to 11 a.m. shift started, I gave my mother a snack and a Tylenol, and then I helped her brush her teeth. She wouldn't put on her nightgown but wanted to sleep in her clothes. I asked her why. She said because she was afraid. I asked her what she was afraid of. She said she didn't know. She is often afraid but doesn't know why. I'm haven't gone to sleep yet because, if she holds true to form, until about 3 a.m, she will be up at least once an hour to go to the bathroom, and she needs me to help her.
She went to sleep without a fuss because her previous hours were calm.
I don't want to leave her where I'm not sure she will get proper care. She will be lost without me despite the fact that she spends as much time with my brother as she does with me. If she stays with him, he needs to bring in qualified care. And that means that he will have to spend her assets to do that. But he doesn't believe that I'm really going to leave; he doesn't believe that our mom's dementia is as bad as it is; he doesn't believe that he will have to bring in qualified care to replace me.
I can challenge his POA and take him to court if he fights it. A lawyer I know said that, if that happens, it could cost me as much as $10,000.
I can leave her behind, visit, and if she's not being properly cared for, ask Social Services to do an assessment.
Both her doctor and the hospice nurse (who will no longer be able to certify her for hospice services because there's no indication any more that she might be dying ) have said that she belongs in a nursing home where she can get 24 hour care.
Talk about being between a rock and a hard place.
But no matter what, I have to get out of here for the sake of my own health and sanity.
I did not post this lengthy piece just to vent and complain. This is part of my documentation of this unbearable situation that I'm in.
ADDENDUM: It is 1 a.m. The electric eye alarm that my brother installed goes off to let me know that she is up. She is sitting in bed. Where am I, she asks. You're in your bed, I tell her. Where am I, she asks again. I try to get her to lie down. She pulls at her sweater. Take this off she says. Do you want to put on your nightgown, I ask. Yes, she answers. And so we change her clothes and she lies down again. And so the night will go.
That's the question she asked as she finally sat up in bed somewhere close to noon today. Usually she asks "Where am I?" Obviously, her dementia has gotten worse.
I tell her her name, in Polish, in English, her maiden name, her married name. By then she's onto her other worry -- "Can I go home now?"
It's night now. I was with her most of the day, since my brother had a dentist appointment. When I'm with her, I try to respond with care to every question, every mood, every demand. After all, her world must be truly terrifying. And I'm her anchor.
Except she's my anchor as well. I can't move beyond her peripheral vision, or she panics. She is downstairs now with my brother, banging her cane on the floor and calling for me. My contact at the Alzheimer's Association local chapter tells me that it's not unusual for dementia patients to latch on to the most trusted caregiver and constantly shadow them. That's what she's doing, and it's making me crazy.
I am holed up in my room, television blasting so that I don't have to hear her distress. I am eating cherries and chocolate chip cookies. My stomach is in knots.
Meds only seem to make her worse in other ways. She needs 24 hour care, and it's become too much for two people. But my brother wants her with him.
And I want to get away from this whole situation, even though she pleads with me: "Take me with you."
It's beautiful here on the mountain. But it's also a prison, especially for her.
"Where are the streets?" she asks. "Where are the families?" she wonders as she looks out the window at the lush trees and patches of blue sky.
It's hard to take her anywhere because she needs a toilet nearby. And her mood can go from placid to panic in a heartbeat.
She has lived too long. I hope that I am not still alive at 92. Or if I am, I still have my mind and my sense of humor.
Meanwhile, I'm sorting through all the stuff I brought with me to this place and downsizing. And packing.
For a while before his death in April 2008, non-blogger Myrln (aka W. A. Frankonis, i. frans nowak), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter, who has salvaged his published, performed, and none-such writings, continues to send me some to post posthumously.
On this Myrln Monday, however, she adds her own grieving voice:
Myrln Mondays: There have been a few in a row now, I think, that I have missed. Forgotten. And then when I remember that I’ve forgotten I feel terrible. And ironic. Because while I have forgotten I have not nearly FORGOTTEN. Not even close. It creeps up on me unexpectedly. Often at night as I’m trying to fall asleep. And suddenly it’s upon me. The too soon-ness. Too quick-ness. Unfairness. Eeriness. Incomprehensible -ness. Surreal-ness. And I am overcome. All the clichés exist within me at once: it’s a bad dream and I’m going to wake up and he’ll still be here.
Just one more day -- one more day to be sure we said everything. Wish him back – on a star, on the moon (“I had a talk with the moon last night,” he’d say to me, “and it’s all going to be fine”) -- on my worry beads. Self-admonitions, I should have gotten out there more. I should have heard something was really wrong when we talked. I should have gotten out there more. The truth of the phrase “sickening feeling” because every time it comes my stomach hollows out and I feel like I’m going to be sick.
Then it’s gone. The same way each time: full of feeling foolish, selfish, sorry-for-myself. Like I’m the only one who has ever lost someone. Only one who has ever lost her father. Who has ever lost him too quickly, unfairly, unexpectedly. The only one who has had to continue on after…
I may forget the Myrln Mondays amidst painting new rooms, preparing for homeschooling, living my life (as my father would be demanding I do anyway as he pointed out in number 8 of his life lessons poem: “Remember the dead in your heart, but honor life and the living with your time and attention because afterward it’s too late”. but I have not FORGOTTEN. Not even close. And as everyone has told me, as painful, unbearable, agonizing, maddening, sad, lonely and empty remembering is, forgetting is far, far worse that all those together. So I am remembering. And missing. And hurting. And crying. And remembering. Always.
SAND HOLE
They excavated sand,
this father and daughter,
digging to China.
I knew it’d really be closer
to Afghanistan,
but their game had a tradition
to follow.
Fathers and sons
have growing between them,
which can be another kind of hole,
while
fathers and daughters
share games and imagination.
And dug holes
always come out in China.
Above the archway leading to my daughter's country kitchen is a long wooden plaque that says "Home -- Where you story begins."
The story of my grandson's 6th birthday party is not an unusual one -- tables lined up with white paper tablecloths on which the dozen young guests crayon while waiting for the cake and ice cream, members of the family and extended family bustling around each other and gathering around for traditional candle blow-out.
The theme of my grandson's party was a little unusual: Massachusetts State Trooper hats and badges and ticket books young guests created themselves. Even the cake was decorated with an image of the official State Trooper car.
What will be an oft-told family story, I'm sure, is my grandson's over-the-top exuberance as he acknowledged each gift, even the ones that weren't something related to being a cop -- and especially the full police outfit that I gave him and that he wore for the rest of the day. For some uninherited reason, he's enamored of authority-figure costumes -- police, fire fighers, FBI agents/spies, doctors, soldiers.... Go figure.
On the drive out to Massachusetts last Thursday, I listened to some beautifully written stories by American combat soldiers on NPR's Selected Shorts program (see Program 42 here). These were not stories about the inhumanity of war. Rather they were stories that reflected the sweet humanity and humor of the soldiers forced to fight the war, stories that reinforced the identities of these soldiers apart from the war.
While most of the ones read on the air were true, the most poignant to me was actually a work of fiction. It was about a female soldier taking her young son to the airport, where he would fly, alone, to his grandparents, while she went off to war.
Perhaps, some day, there will be no need for war stories.
One of the distinguishing characteristics of the Halloween witch is that bump on her nose. Well, not only do I have one; I have three. I guess that makes me officially a witch.
The dermatologist says they are "fibromas," which are benign kinds of tumors. Mine are under the skin, and so they are not really noticeable. I can have them "sliced off" (the doctor's words), but insurances don't pay for that because that's considered a cosmetic procedure. He says it's not a big deal to take them off, or out, or whatever they do to remove them. (But he'll have to cut the skin, so how is that not a big deal??)
When I first got them (one ages ago, one six months ago, and one last month) I thought that they were sebaceous cysts, and so I put hot compresses on them and they eventually diminished in size, but they never went away.
At the moment, they don't bother me, but I know they're there. I can feel them.
I can't worry about them now, however. In two days I'm leaving to head out to Massachusetts for my grandson's sixth birthday, and I'm going to stay over at least three nights.
So it will be just my brother and mother. The hospice nurse suggested a change in my mother's medication, so we're going to try that. Her extreme anxiety is overwhelming her. And us too. I guess it's her dementia getting worse. Between that and her increasing aches and pains, it makes it almost impossible to interact meaningfully with her. It's like trying to take care of a sick toddler.
I often wish I really were a witch so I could get on my broom and fly away.
As I'm cleaning out old files, I found an old receipt from the vets with my cat's age on it. (I've been trying to remember when I rescued her from the tiny pet store cage in which she could only sit in her litter.) As far as I can figure, she's almost 12 years old. For a fat old cat, she sure is doing well.
Because I'm anticipating moving her with me when I finally get to my daughter's, I invested in a large carpeted "house" for her litter box. If I had known that it weighs 50 pounds (the inside is melamine), I might not have ordered it. On the other hand, maybe I would have, since it also works beautifully as another sunny window perch for her.
My mom, who is older than my cat in cat-years, is not doing so well. She seems to only be able to stay awake for a couple of hours at a time. She often doesn't eat unless one of us feeds her. The hospice nurse is stopping in today, but I doubt if there's anything she can tell us that we don't already know.
The only time I seem to get outside for any sun shine is when I go out to tend my kitty corner garden. For lack of any other place to put it that wasn't overgrown with weeds, I tucked it into the space between the driveway and the woods. It's not perfect, but what is.
Not even my grandson is perfect, although he's close. He can't be bothered to put on matching socks in the morning, but, as my daughter relates on her blog:
Our big brained boy wanted to know yesterday how the first person ever born was, well, born -- because if he/she were the first, how could they be if every person born was only born after the mother before them was born (this child is only turning 6 next weekend, btw).
So there I was, having to launch into a succinct, but thorough explanation of evolution from slimy muck to Man.
If anyone in the western Massachusetts area is considering using Sturdy Home Improvement construction company, you should check with my daughter, first. Read about her experience here.
For a while before his death in April 2008, non-blogger Myrln (aka W. A. Frankonis, i. frans nowak), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter, who has salvaged his published, performed, and none-such writings, continues to send me some to post posthumously.
POEM WRITTEN IN THE CITY
OF LANDLOCKED PEOPLE WHO
THINK THAT OCEAN IS ONLY
A WORD AND SUN IS A BALL
FOR SUMMER SUMMERTIME FUN
(for mdf)
bobbing seaborne
on flashing flat planes
of sun's bouncing image,
a single dory --
oars shipped and tucked
inside for keeping --
seems adrift and lost
from coves safety.
but horizon blocked,
navigator waits --
(dancing dolphins
side the gurgling surf
astride the swollen thighs
of seaweed waves...
...candy apples and taffy twists
and caramel is a candy) --
with sleeping eyes
and fingled breath
and hands for firmly guiding.
Actually, as much as the weeds around here need whacking, they're not getting it. They are pretty much out of control. Weeds: plants considered undesirable, unattractive, or troublesome, especially one growing where it is not wanted,
It's not just the weeds around here that are out of my control. I am still living under the tyranny of my mother's growing dementia and dependence combined with my brother's demoralizing rules and realities.
Not much freedom for me here, on this Independence Day.
Maybe I should go out and buy my own little weed whacker, vent my frustrations on that army of undesirables that are intruding over every path from the door to the world. Whack! Whack! Take that, you creepy things.
I did murder a whole bunch of Japanese Beetles today as they attempted an orgy on my tomato plant. Whack! Whack!
One can only hold in anger and frustration for so long. Yes, I think I need to go out and whack those weeds, clear a path, clear my head. I know that those weed whackers are pretty loud, loud enough to muffle the yelling I need to get out of my system.
Someday I will be able to celebrate a real personal Independence Day. Until then, I need to go out and get a weed whacker.
On Independence Day back in 2002 I blogged that there should be a "Interdependence Day," and a commenter sent me to this page, where there is a Global Declaration of Interdependence, as follows:.
Preamble:
In acknowledgment of the many existing documents and efforts that promote peace, sustainability, global interconnectedness, reverence for life and unity, We, The World hereby offers the following Declaration of Interdependence as our guiding set of principles for moving forward into this new millennium. It is inspired by the Earth Charter, the essential values of which have been culled from the many peoples of the Earth.
Declaration/Pledge
We, the people of planet Earth,
In recognition of the interconnectedness of all life
And the importance of the balance of nature,
Hereby acknowledge our interdependence
And affirm our dedication
To life-serving environmental stewardship,
The fulfillment of universal human needs worldwide,
Economic and social well-being,
And a culture of peace and nonviolence,
To insure a sustainable and harmonious world
For present and future generations.
And tonight, as I watched part of New York City's fireworks, I couldn't help wondering how all of that money spent on fireworks all over this country could have instead been used for much more important and humanitarian purposes.
But rulers know how to pacify the people using bread and circuses, how to make them forget what the late George Carlin so eloquently reminded us about.
1984 -- the year my dad passed away and the year that my son b!X acquired his first Macintosh.
I unearthed it from under the steps in my brother's cellar today, padded khaki case covered with at least two and half years worth of cobwebs and twenty years worth of the dust it has accumulated as I've hauled it around through move after move. B!X long ago moved on to other parts of the country and other versions of the Mac.
I don't know why I kept it. And I don't want to have to lug it through one more move.
I can't help wondering if it's worth anything, this boxy Macintosh 128K.
I also can't help wondering -- if I kept it for another twenty years, would it be worth something then?
It's astounding to realize that the damned thing cost close to $3000 back in 1984. My dad was a very generous man, both in life and in death.
That is such a lovely and uplifting piece of synchronicity.
Not surprisingly, there are no rainbows over here in the mountains -- just lots of thunder and rain and some kind of blight happening on my little "oasis in the wildnerness" garden. And I can't take a photo of it to see if anyone knows what it is because I dropped my little camera while away the other weekend, and it broke. I bought a new little one but haven't had the time to figure it all out yet or download the software.
Meanwhile, despite taking an antidepressant, my mom is having more frequent bouts of uncontrollable crying. She keeps asking for her husband, my dad, who passed away almost 25 years ago.
We are sitting at the table, and she is eating some spaghetti with a roasted sweet red pepper sauce that I make. She decided that she doesn't like tomato sauce and she doesn't like straight alfredo sauce, so I mix my pureed sweet roasted red peppers with a little alfredo, and she wolfs it down.
"Where are your children," she asks.
"They live far away," I answer. " Where are yours?"
She looks at me and says, "I don't know."
I don't know which is worse, Alzheimer's or "old age" dementia. With Alzheimer's you don't realize that you're not remembering. With dementia, you are torn apart by a sense that you can't remember even though you want to.
I look back at my original blog, which I began in November of 2001. At that point, I was already taking care of my mom, living across the hall from her in a senior citizen apartment building. Even back then, when she wasn't so bad yet, I was struggling to have some sort of life apart from caregiving. With each month that went by, I lost more and more of my own life.
I never thought that it would all go on for so long.
Already, newspapers and magazines (and soon TV programming) are encouraged to sell key words to advertisers – so-called “in-text advertising” – in the online versions of stories. Can you imagine advertisers going for stories with key words such as “health care reform,” “environmental degradation,” “Iraqi casualties,” “contracting fraud,” or “K Street lobbyists.” I don’t think so. So what will happen to news in the future as the already tattered boundaries between journalism and advertising is dispensed with entirely, as content, programming, commerce and online communities are rolled into one profitably attractive package? Last year the investment firm of Piper Jaffrey predicted that much of the business model for new media would be just that kind of hybrid. They called it “communitainment.”
Moyers also said great stuff like:
...this Administration – with the complicity of the dominant media – conducted a political propaganda campaign, using erroneous and misleading intelligence to deceive Americans into supporting an unprovoked attack on another country, leading to a war that instead of being “quick and bloodless” as predicted, continues to this day. (At least we now know that a neo-conservative is an arsonist who sets the house on fire and six years later boasts that no one can put it out.)
and
Democracy without honest information creates the illusion of popular consent while enhancing the power of the state and the privileged interests protected by it.
Democracy without accountability creates the illusion of popular control while offering ordinary Americans cheap tickets to the balcony, too far away to see that the public stage is just a reality TV set.
Nothing more characterizes corporate media today – mainstream and partisan – than disdain towards the fragile nature of modern life and indifference toward the complex social debate required of a free and self-governing people.
This leaves you with a heavy burden – it’s up to you to fight for the freedom that makes all other freedoms possible.
Be vigilant; the fate of the cyber commons is at stake here, the future of “the mobile web” and the benefits of the Internet as open architecture. We’ll lose without you: the only antidote to the power of organized money in Washington is the power of organized people at the netroots.
You can go to the FreePress site and read, listen to, or watch the whole amazing speech.
A couple of years ago, I agreed with Molly Ivins that Bill Moyers should be president. Maybe what he should be is Barack Obama's Carl Rove.
Surely there must be some foundation or trillionaire somewhere who might want to give out grants to independent citizen blogger/journalists? I nominate b!X to be first on the list.
I spent last weekend in a place as close to perfect as I've been in a long time. Good friends, good food, a good book, a lake, mountains, a spacious home with lots of decks, pitchers of Cosmos, and laughter-filled games of Boggle. I could have stayed there forever.
Now I'm back in the situation I should never gotten into, and I'm finalizing plans for my escape, with support from both the Hospice nurse and social worker. I would like to take my mother (92 years old and demented) with me, where we would be with our extended family in a home with beautiful gardens on a dead end street with lots of neighbors. She would have pleasant distractions from the painful movements of her body and mind. I would bring in the help we both need.
But my brother doesn't want to let her go. And I just can't stay.
As my hair grows gray, I need to spend more time in places of peace.
I am heading out tomorrow with my gaggle of friends to Lake Luzerne, which is not far from Lake George, which, as fate would have it, is the site of the annual motorcycle Americade at the same time. No doubt, the roads will be crawling with hogs of all kinds and their wannabe relatives
Back in high school, I dated a guy with a motorcycle -- unbeknownst to my parents of course. It might be fun to ride on one again. I mean, isn't there some commercial where a grandmother rides in on the back of a bike that her grandson is driving? Hmm. Maybe I'll run into a senior citizen biker.
Meanwhile, I'm trying to figure out if the itchy bumps popping up on my arms are flea bites or hives or some sort. I can't seem to find any fleas on my cat, but I know those critters are pretty tricky.
Also, meanwhile, the hospice nurse continues to check in on my mother. Mom somehow fractured a rib while I was gone a few weekends ago. While the pain seems to be finally subsiding, she is getting less and less stable on her feet and just is not happy about very much. The nurse brought in a young woman who played the guitar and sang, and my mother seemed to like that -- although after they left, she was sure that they stole some of her jewelry.
I don't know how my brother is going to handle four days and three nights taking care of mom on his own. If it were me, I'd hire someone to come in and help. I'm leaving a list of available private hires on the refrigerator and a stockpile of food that mom likes inside.
For a while before his death in April, non-blogger Myrln (aka Bill Frankonis), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter has been sending me some of his writings to post posthumously, but we were all away all weekend at the party Bill said in his will that he wanted.
Were you whirling in your ashes as so many of those people whose lives you touched so meaningfully told stories about their relationships with you? Even a few with whom you were no longer on the best of terms stood up and remembered the good times.
I know how much you wanted to let those people with whom you felt close at various points in your life know how much they meant to you. Well, obviously they already knew.
I didn't count how many of the little theater's seats were filled, but there had to be between 50 and 60 people who came in for the story telling. And there were others who came and left before that time as well.
You would have loved to hear the stories -- some funny, some poignant -- all remembering you at your best. There is no doubt that you will be remembered by your colleagues and students not only as an amazingly talented writer and director, but also a uniquely nurturing mentor and teacher.
You would have been so proud of our two kids. Well, I should say proudER, since you always have been proud of them.
You also would have loved to see your almost 6-year-old grandson and the (equally young) granddaughter of our friends Pat and Bill. They hit it off amazingly. Word has it that she said that she really liked his hair and was going to marry him. The pairing of our respective offspring didn't happen last generation. Wouldn't it be a hoot if it happened with this one.
I wish I could talk to you about that novel Enchantment that you gave me a while ago and I found in my pile of books-to-read last week. I couldn't help see you and me in the princess and the scholar. I wonder if that's what you thought as well. I'm only half way through, so I don't know how it ends. I hope that it ends better than we did as a couple.
For the first time ever, I see a lone crow wandering around the area of the bird feeders. At first I wonder if it's a grackle, but a quick look in the Audobon bird book confirms that, indeed, it is a crow.
My mother is now losing her hair. Her digestive system is screwed up. She is always afraid, never satisfied or happy, constantly restless.
I watch the crow march back and forth across the small area where squirrels and doves are pecking at what the finches and cardinals have accidentally tossed their way. He doesn't seem to be eating. He looks like he's checking things out.
That's the dilemma of every blogger who is considering whether it's appropriate to post a certain entry.
b!X deliberated and then made the decision to post. And I could have left it at that.
But I see his Deathbed post and photo link as a tribute, a reminder -- in a sense, a virtual wake, a moment to say a final goodbye -- and, for those of us who were not there to actually witness, closure.
You can read his post and decide for yourself. This entry is my decision.
And, just as an added note that reflects how attuned our little family is to the magical occurrences in life that Myrln loved to recognize, Myrln died just about at 5 p.m. When we survivors were at his apartment last weekend sorting through his stuff, our daughter noticed that the clock on his wall, which was keeping accurate time the last time we were there, had stopped at 5 o'clock.
I woke to the smell of roses today, but there are no roses anywhere around here. I smelled them in the garage, too, when I went to take out the garbage.
My father loved roses. His wake was full of them.
My mother barely woke up this morning. Her mouth hung slack, her words slurred. She took a few bites of french toast, a few sips of her fake coffee, and now she's back in bed. I wonder if she's smelling roses.
Yesterday's Myrln posthumous post was a poem with a "life as a garden" metaphor. Reading it made me think about how many of the legacies he left are what continue to grow from the seeds of his thoughts, his words.
While the "garden" has always been a life metaphor for me as well, I tend to use it in a different way. And that fact is also a perfect metaphor for how we related as spouses: we started in the same place, with the same need, but we went out from there in very different directions.
They gave me a garden
the size of a grave,
so I filled it with raucous
reminders of sense:
marigold nests,
nasturtium fountains,
explosions of parsley, and
layers of lavender --
forests of tomato plants
asserting lush ascendance
over scent-full beds of
rosemary, basil, and sage.
And waving madly above them all,
stalks of perplexing
Jerusalem artichoke,
an unkillable weed
that blossoms and burrows
and grows up to nine feet tall,
defying the grim arrogance
of gravity.
elf
may 02
My literal gardens are transient. When I move away, they decay away and are forgotten. Such is the nature of many of my legacies.
Once in a while, though, I need to believe in something permanent -- hence, the two lilac trees I planted back from the edge of the woods around this house, where my brother most likely will not mow or snow blow them down when I move away from here. Someday, new owners will look out the window at the acres of rotting windfall and scraggly brush and old shaggy trees and see two blooming lilac bushes -- a sepia landscape touched with unexpected color.
Myrln is gone, but his spirit remains with us in the power of his words, thanks to our daughter, who salvaged his collection of writings.
Myrln's birthdate is this Thursday. He would have been 71.
Poem for My Birthday
Through years
-- with seeds my own, some received before, some given later --
I planted myself:
a feeling there, a thought,
a sense of what might be, was, seemed to be,
a tear, a laugh, angry shouts and happy,
whispers, a reaching, holding, letting go, loving,
isolationliness,
some hiding, fear, joy, longing,
scatterings
of pain, risk, uncertainy, determination,
bit by bit
seeding through the years.
And making my garden of word and heart:
some parts stillgrown,
others modest,
and a few full flourished,
all being the what why where
whole of me.
Some women take to mothering naturally. I had to work at it. And so I wasn't the best mother in the world. I would have worked outside the home whether I had been a single mom or not. But because I was, mine were latchkey kids, with my daughter, beginning at age 12, taking care of her younger brother, age 5, after school. I left them some evenings to go out on dates. Oh, I did cook them healthy meals, and even cookies sometimes. I made their Halloween costumes and went to all parent events at their schools. My daughter took ballet lessons, belonged to 4H (but I got kicked out as Assistant Leader because I wouldn't salute the flag during the Vietnam War) . I made my son a Dr. Who scarf and took him to Dr. Who fan events. I bought him lots of comic books and taught him how to throw a ball. But most of all, I think/hope I did for them what my mother was never able to do for me, -- give them the freedom to become who they wanted to be -- to explore, make mistakes, and search for their bliss. I think/hope that I always let them know that, as far as I was concerned, they were OK just the way they were/are. (Me and that dear now dead Mr. Rogers.) Not having had that affirmation from my mother still affects my relationship with her. I hope that my doing that right for them neutralizes all the wrong things I did as they were growing up.
So, you two (now adult) kids, here's to you both. You keep me young, you keep me informed, you keep me honest, and, in many ways, you keep me vital. I'm so glad that I'm your mother.
So, in memory of those not-always-good ol' days that you two managed to survive with flying colors, here you are, playing "air guitar and drums" -- enjoying each other's company sometime in the 70s and bringing so much joy into my life.
b!x has been all over online trying to find this Bailey's hat in a size large. He wants to wear it to his Dad's memorial celebration on May 25, which means he needs to get one by May 21, before he gets on a plane to come east for the event. (His Dad passed away on April 10.) There are none available online by the deadline.
Here's the challenge. If there's a men's hat store anywhere near you, dear reader, could you call them and see if they have that hat, which is a black "Johnny" braided (straw) porkpie from Bailey (item # 81680), size large.
If they have the hat, please leave a comment here letting me know how b!X or I can get in touch with you and arrange to have to hat bought and sent to him.
Again, there's no way to get it on time online, so b!X is hoping someone out there will make a miracle and find him one that he can get on his head by May 21. (It's a son-father thing.)
Myrln is gone, but his spirit remains with us in the power of his words:
From a scrap of paper on his desk -- quickly hand-scrawled, a stray thought, bit of story, strand of memory:
Dinner table – metal goblets
These goblets belonged to my mother. Asked us to drink a toast from them because had she lived she would have been 89 years tomorrow. She was 23 when she had me, and had only 4 more years left to live. There are 4 generations sitting here today. I ask you, in her memory, to remember to make the most always of the time you have with those you love and who love you. So, Mamma, here’s to you…salut…by remembering you, we remember ourselves.
salut
See www.myrln.com for information about the remembrance party being held in his honor on May 25, as well as plans for publishing his non-published works.
Myrln is gone, but his spirit remains with us in the power of his words:
Fathers and Daughters
Little girls are nice,
but we do them wrong
fussing with their hair and dressing them up
like dolls –
teaching them from the start
they are decorative playthings.
Better we should feed them
words and numbers and tools
to remind them
that before women, they are people.
Teach them love and caring and nurture, yes,
but not as the entirety of their being,
else those qualities
become walls and prisons.
Give them, as well, wings
and teach them to fly –
in case later in life
someone builds walls around them.
Little girls are nice,
but daughters who are their soaring selves
are better.
Fathers and Sons
All the time they’re growing up,
sons try hard to please their fathers.
They play ball, follow dad’s interest in cars,
or in building things,
or in fishing –
whatever it is that pleases dad.
Mostly learning how to be a man.
If they’re lucky,
they’re not required to embrace any of those
for a lifetime.
If they’re lucky,
somewhere along the way,
they’re let loose
to strike out after their own interests
and to please themselves.
And fathers,
if they’re smart,
realize that somewhere along the way
is a turning point:
a time when sons become teachers,
and fathers can learn
what their sons became on their own,
how manhood is not a fixed concept.
And say to their sons,
“Good job.”
Then both will know
they did right
in pleasing each other.
I'm back from another day of helping my daughter clean out her Dad's stuff. I focused on his clothes, setting aside some that I'll send to b!X, since they probably will fit him. As it turns out, I took a pair of summer shorts and a pair of cargo pants that fit me because they both have elastic in the waistband. Men's pants always have lots of pockets. I wish more women's pants did.
It was so strange going through his things. An invasion of his privacy. Except it doesn't matter any more. Except it sort of does.
His being gone forever still doesn't seem real.
I took a Best of Moody Blues CD. A blue pottery bowl. A mortar and pestle. An orange windbreaker. I don't have a windbreaker. I took the two new deliciously soft bed pillows that he never had a chance to use.
I took five trash bags of clothes, a big box of shoes, and several suits on hangars to the Salvation Army. And there are still clothes left in his closets.
His walls and shelves (except for the full book shelves) are covered with art and crafts. Beautiful stuff that none of us has room for. It will all have to be disposed of.
We keep reminding ourselves that these things are not him, they are not his legacy. They are the things he liked to look at, to think about, to help him remember. They served an important function in his life. He no longer needs them. His legacies are our memories and all that he accomplished through his creativity and passion.
We assess his belongings with great practicality. One or the other of us will make use of his recliner, his couch, the chest of drawers that was part of the first real bedroom set we bought when we were married. (When we divorced, he got the bed and the chest of drawers. I took the dresser with the mirror. The dresser fell apart two of my moves ago. The chest of drawers still looks brand new.)
Monday was the day that Myrln (aka William Frankonis and my once-husband) posted his rants here on Kalilily Time. He wrote a great deal more than political rants, however, and from now on, Mondays will be the place where Myrln will post some of his best writings, posthumously, through the auspices of our daughter.
Snippets from “A Letter to My Grown Children” -- post 9/11 2001
[snip]
…We live in the Now. Sometimes drastic events make us aware of that simple fact we tend to forget or ignore; we always live only in Now. As Buddhism has been telling us for centuries. No matter how or how much the world changes, we can still live only in the right Now. How is ours to determine. We may mourn loss and worry what’s to come, but here we are – Now. And Now is sometimes good, sometimes bad; sometimes easy, sometimes hard; sometimes joyful, sometimes sad. But whatever it is, it is, and we have no choice but to live in it. Which, when you think of it, is a fine thing.
[snip]
It makes sense, then, to make Now the best possible o us because we never know. And that fact should teach us: no delaying, waiting around, procrastinating, habituating, sinking into torpor. Look. See. Be. Whether alone or with others, do it. Now…not tomorrow.
[snip]
So how do I know the validity of what I’m preaching? Because in many ways, I have always delayed Now for dreams-to-come or for fear of future consequences. But I know – Now – those dreams/fears will never come to pass. And even if the fears prove true in the end or the dreams went unfulfilled, so what? Why didn’t I at least make my Nows what I wanted them to be?
[snip]
Only love lives still in past and future. Strange thing, love. It’s why I can always say I love you Now, always have, and always will.
Though solitude and communion are both necessary and do in part serve to renew the depth of one another, a man must decide for himself at which point to give up one for the other.
In the corner of a file folder holding my various diplomas -- a transcript of my grades for the 1958 - 1959 college semesters. Suffice it to say that I was much less than a stellar student. But I could hold more beer than most of the guys I knew. Ah, those were the days.
Our offspring and I are rooting around in search of legacies left by my once-husband. He left boxes of memorabilia about his plays -- from playbills to reviews, to posters -- so those legacies are obvious. What is not obvious to our kids are the times in his life before they existed, and b!X, for one, is in the process of digging out his Dad's military history -- mostly because it appears that during that time period he changed from good Catholic to angry agnostic. I met him after he got out of the army, so I have no idea what transpired to precipitate that shift in world view.
As I'm rooting around in my -- and my mom's -- old files, I'm finding glimpses of an old self of mine that I had forgotten in the lines of poetry I had written back when I was in high school. Those are the ones that my mother saved; I never gave them to her, so she must have gone through my teen-age dresser to find them when I was away at college. If I knew then that she was invading my privacy, I would have had a fit. Now, I'm kind of glad she saved them, because I never would have.
The Winter passes into Spring
The birds begin to sweetly sing,
And through the air the Church bells ring.
But, yet, I notice not a thing.
To me the world is cold and gray,
E'er in twilight, ne'er in day.
There's nothing in my life that's gay.
Happiness seems far away.
(Of course, in 1957, "gay" only meant "happy.")
Here's one from 1953. I was 13.
The land is so dry, it's all just a waste.
We've no water for days, no food to tatse.
The sand on the desert is not food to eat.
Even the cactus furnish no meat.
The sun is so hot and oh so dry.
The hot breeze in our ears whispers
"Die......dry.......die!"
I don't know if it was adolescent angst or if I was depressed even back then, but here's one I wrote when I was 18.
I hear the dreary, mournful refrain
Of the steadily falling downpour of rain.
Not the rain of a wild and stormy night,
With furious streaks and flashes of light,
With tormenting winds of passionate force
And eerie outcries from an unknown source.
Not the kind of rain that rises from hell
And holds all the world in its magical spell.
Not the kind of rain that's so torrid and splendid --
That you still stand in wonder even after its ended.
And still not the rain that's mellow and mild
As sweet and refreshing as the smile of a child.
Not the shower that calls all of nature to waken
With gentle caresses that leaves all unshaken.
Not the rain that makes every creature feel new.
Not the rain that leaves the world sparkling with dew.
But a gloomy depressing curtain of gray
That covers and hides all the brightness of day --
A shroud of depression, a mist of despair,
A cloak of discouragement, everywhere.
OK, so there's lots of trite phrases and rhymings. After all, my high school education was in a Catholic school, where in our senior year the big piece of "literature" we read was "Father Malachy's Miracle." What I can't help noticing, though, is my focus on the dark side of things. Even then.
Here's one I like. I must have been a freshman in college when I wrote it:
If I were to choose my own heaven,
It would be forever Spring,
with no bugs
and plenty of food
and books, books books
and a rock 'n roll band on weekdays
and a jazz band on Sundays
and people people people
and all of them would be college graduates.
If I were to choose my own hell
it could be no worse
than boredom.
I think that my once-husband would have chosen the same kind of heaven. Except for the "people people people" and probably the "college graduates." He was never bored in his own company. Unlike me.
Finally, I wrote this when I was 20. Apparently, I knew that one day I would be rooting around. Twenty is Young
When I am old
I will not care for
rock 'n roll,
slopping
and
jazz
bongos drums
beat poetry
and
Kafka
Kerouac
Jake Trussell
and
lifeguards with
sea-burnished hair
and convertibles.
But now I am young
and I know that all of these
will one day be
the cushions
on the couch of memories
on which I will repose
I am going through my photo albums, looking for photos of my once-husband from the old days. I was surprised to discover that I only had one of both of us with our kids, and that one was from back in 1970. b!X has posted it on his blog. There are lots of photos of our kids, but few of us together.
I did find one photo of the two of us from our beer-partying college days.
I'm hoping that, as word spreads among our long-time-ago friends, they will look and see if they have any old photos of Bill and send them along. I know that our offspring would love to have them.
The sun is out, my seedlings are thriving, I'm taking my 60 milligrams of happy pill every day, we have hospice available (including a social worker for moral support), and my mom is still sleeping a lot.
I should be feeling a whole lot better than I do. I shouldn't be feeling this "stuck." I should have more energy.
Maybe I have spring fever. Maybe it's the just-past full moon. Maybe the loss is greater than I thought.
Elevator
Jim Culleny
Be still in a field of
slowly falling snow
and renounce focus
Peer into the distance
to where the hare
hunkers under a log
and the coy dog
waits for it to move
Let a billion dropping flakes
inundate your vision
unselfconsciously
and find yourself rising,
taking the forest with you,
taking it all,
riding the snow-snuffed
woods into a gray sky,
levitating at the pace
of cool, languid
precipitation,
rising gently weightless
with pine and spruce
and the white-clad carcasses
of busted oak and ash
and every crystal-buried
stalk of undergrowth,
—the graygreen scales of lichen,
the silent future of mushrooms
underneath awaiting
the blessed touch
of damp and sun,
take with you the lights
of a distant house
and the wisps that unwind
from its chimney
like tendrils of love
of a blazing heart,
find yourself rising
unfettered as a hawk on a thermal
a dandelion tuft on a whistled breath
a balloon let loose from the grip of a child
ride upward,
easy,
weightless as a well-lived
soul
The above from one of Jim Culleny's daily poetry emails.
My once-husband was my Monday guest blogger, Myrln (AKA William A. Frankonis), who passed away lalst Thursday. In honor of his memory, our daughter asked me to post the following, which she found in his extensive files of his own writings. He doesn't have to be here to be here.
Lessons from the Wonderground: a Father to his Children
ONE
Try not to hurt anyone, which includes yourself.
TWO
Try to make yourself whole, knowing all the while that’s a lifelong process.
THREE
Be true to yourself, whatever that is at the time, for like everything else, your self changes.
FOUR
Speak out against wrong, however you define it and no matter who is the culprit.
FIVE
Honor children and always listen carefully to them; they are all smarter than we credit them and beyond you, they may have no voice but yours.
SIX
Find and honor all the wonder in all of Nature and in all of yourself, and reconnect, for you, too, are a part of Nature.
SEVEN
Keep close to family, blood or otherwise, for you are, and always will be part of each other.
EIGHT
Remember the dead in your heart, but honor life and the living with your time and attention because afterwards it is too late.
NINE
Laugh often, cry as necessary, fear what should be feared, love deeply, hurt when there’s pain, be courageous, know the holy value of breathing and of everything else that makes up living.
TEN
Find and regularly visit the stillness at the heart of life.
"..a bit of sun and the touch of love's hand," you wrote once in your script about "Myrln."
That's what we had yesterday when we gathered to pick up your ashes and bring them home. I know that you will appreciate the plans to temporarily keep them in the old Orville Redenbacher popcorn tin that you kept on your bookshelf. We are making plans to gather again this summer to take you where you found the most peace and comfort and leave you to the gentle rocking of Mother Sea.
It was a beautiful early spring day sandwiched between those wet and gloomy days April often brings. We took you to lunch. Well, we left you in the car while we had lunch. Here we are, leaving the restaurant. Not me, of course. I was taking the picture.
And then we went back to your apartment, got a bat and ball and went out into the sunny field to play. There was lots of sun and lots of love. We felt your spirit there with us, popping the ball and chasing it out into left field. I was too warm in the sweater I had worn, so I went back to the apartment and changed into one of your shirts. I hope that was OK. I guess it's too late if it wasn't.
"We're a quirky family," Melisa commented to a strange look from the funeral director after something she had said.
We all took something of yours before we left (although we will be back in a week or so to manage what needs to be saved from the complexities of memories you left behind). I took the little laughing Buddha as company for the traveling Buddha you gave me so long ago. I also took a little side table with a tiled top painted with two flowers that look kind of like anemones. That is going to become my altar space. I think that would be just fine with you.
There are so many chores I should be doing now that I'm back here with my mother. Instead, it sit alone at my computer and write and cry.. You would understand that.
I wish we had had more time with you -- a lot more of Myrln's magical
It costs much to grow old:
I've fondled the Springs
like sticks of new furniture
with the wood still sweet to the smell, suave
in the grain, and hidden away in its lockers,
I've stored my wild honey.
That's why the bell tolled
bearing its sound to the dead,
out of range of my reason:
one grows used to one's skin,
the cut of one's nose, one's good looks,
while summer by summer, the sun
sinks in it's brazier.
Noting the sea's health,
its insistence and turbulence,
I kept skimming the beaches;
now seated on waves
I keep the bitter green smell
of a lifetime's apprenticeship
to live on in the whole of my motion.
Coincidentally, this is a recent one of Jim Culleny's daily poetry emails.
A song from the fifties, I think, keeps running through my head. It's been there for almost a week now. I can't find it anywhere on the net, but, of course, I don't know the actual title. I remember the first line and the tune.
"You're my first love, and you'll be my last love...."
Any of you who remember the fifties know that song?
ADDENDUM: Thanks to Cora, who left a comment, I now know that the song is "Soldier Boy" by the Shirelles -- which is appropriate, since I met Bill just after he got out of the army and returned to the college where I was also a student.
I wasn't there this afternoon when my daughter gave permission to turn off the breathing machine and my ex-husband, her father, took his last artificial breath. I was home, getting ready for the Hospice nurse's visit tomorrow to assess my mother.
But I was with him for more than a day before that, when he told me had had an earworm for the past several days.
"Bloody Mary," he said smiling, as we remembered the production of South Pacific in which we performed together more than 35 years ago, he as Lt. Cable, and I as Liat.
In the back of my smile, I think about another bloody female. Kali: birth mother; death mother, tongue redder even than betel nuts. She had wormed in far beyond his ear.
He understood my fascination with Kali, Lilith. He might have used other names for those forces, but he knew them well. That was part of what we always had in common -- our immersion in the poetic power of myth. "Myrln" understood magic. Our son tells me that, for a couple of days before I called to tell him to get on a plane, he saw three crows chasing a hawk. Bill would have embraced that metaphor.
"There's one thing I really have to do," he had told me in between dozing off in his recliner just two days ago. "I want to write down how I feel about all those people who have been close to me. I know that I'm a very private person. I know that I've played my life close to the vest. I want to tell them how much they mean to me."
But he never had a chance to write that last piece of his special eloquence. He also never had a chance to enjoy that first day of 70 degree weather after the long dreary winter that he hated so much.
Nevertheless, the depths of his feelings had been expressed often in the many scripts (some performed and some not), memoirs, and poetry that he had written over his lifetime. His original stage play, The Killings Tale, won a audio book "Audie" in 2004.. His adaptations and original scripts have often been performed by the New York State Theater Institute.
Warner Music Group awarded NYSTI $400,000 in 1996 to develop five new musicals for family audiences. The first of those was “A Tale of Cinderella” by W.A.Frankonis, Will Severin, and George David Weiss, made possible in part by funding provided by Warner Music Group and by the participation of Warner/Chappell Music, Inc. An immediate success, the award-winning show is available as an Atlantic Theatre CD or cassette and has been re-released on VHS as part of Warner Home Video's 75th Anniversary Celebration. Vocal Selections from “A Tale of Cinderella” is available from Warner Bros. Publications. The video was broadcast nationwide on PBS stations to an audience of more than 56 million TV households (half of potential US audiences). In the 2000-01 Season, “A Tale of Cinderella” toured all the major cities of New York including Buffalo, Syracuse, the Capital Region, and Manhattan.
His life and work will be remembered by a great many people. But I will remember him as the young man I married in a flurry of passion and possessiveness even though in many ways we were oil and water. We wound up being better friends than spouses.
I will miss his political rants and the books he would send me after he read them. I will miss the father he was to our children. I will miss a friend, and I will always be glad that I was able to be there for him when he needed help so close to the end of a life ended too soon.
ADDENDUM: b!X has posted excerpts from his dad's willl and it is no surprise that Bill used the same humor, honesty, and creativity in writing his will as he had with all of his other writings.
Myrln fidgets in the hospital bed in the emergency room, where they have him hooked up to various machines that beep and chime and whir.
"I just wanted a few more days. I needed a few more days. I needed time to think...." He looks at me with eyes angry and sad at the same time. He is back in the hospital after only two days at home from a week-long stay for tests and such. I have been with him for the past 36 hours, including this morning when we had to call a Rescue Ambulance because he couldn't breathe, even with an oxygen tank.
We have been divorced now for twice as many years as we were married. But time had healed our wounds and we had developed a friendly relationship.
"I will be eternally grateful," he wheezes, "for all you are doing for me now."
My eyes fill with tears. "No problem," I say.
"I have to tell you something," he says. "Even through it all, there was always a little love left."
"Yes," I say. "Me too."
And I'm crying and we are holding hands the way we once did long before I begged him to stop smoking.
Tonight he is temporarily hooked up to a respirator. b!X arrived from Oregon, and his sister and family from Massachusetts. He has not yet been awake for b!X and him to have a little time together. I hope he wakes, for both their sakes.
Meanwhile, I am back on the mountain with my mother, but I suspect will be be leaving again in a day or so.
They will take him off the respirator. He will either breathe or not. Either way, he won't be going home again.
Myrln, who once blogged here on Mondays, is my former spouse, the father of my children. He has inoperable lung cancer, which has spread to just about every vital organ.
While my mom fades slowly away, we are dealing with another crisis in the family, and that's why I haven't been blogging. I haven't been here; I've been in Albany with my daughter as she struggles her way through the health care systems to get support for her dad when he leaves the hospital.
My role was moral support, source of experiential information, and entertainer of my grandson, who had to come with her from Massachusetts. There was no one with whom to leave him for four full days while his own dad went to work and also monitored the construction process on their house addition.
Other patients came and went throughout those four days that we sat in and out of his hospital room. We watched them being taken to surgery, watched them come back and get going again.
But my offspring's dad didn't get up and didn't go anywhere. His lungs are waging war against hope. We are waiting to hear where he will be going.
And now I'm back here with my mother, and my daughter is back in her home as well. I am worried about her own health, as her commitment and persistence kick in and she continues her long distance struggle to manage her dad's care (with crucial help from a close friend of his who lives nearby).
I help from here as best I can -- checking out a county program that provides financial assistance with home care for eligible elders, local home care agencies, walkers, tub chairs, recliner lift chairs.....
Whatever the outcome of his final tests today, he will need an awful lot of help. And our small family is scattered, each with his/her own responsibilities. But we are doing all we can from where we are, knowing there will come a time, too soon, when we will all be gathering for the final going.
My mom and I eat in front of the television set in her little sitting room. She sits in her soft recliner in front of a tray table. I balance it all on my lap.
The kitchen table is littered with boxes of her favorite cookies, her can of fake coffee, glasses half-filled with water, a water jug (we have a really stinky well), her container of pills for the day, a sugar bowl, salt and pepper shakers, and other assorted objects, including a pair of my reading glasses.
For the more than a quarter of a century during which I lived alone before this, I rarely sat and ate at my table unless I was reading while I was eating. I don't think we are very different from many people these days. For the most part, we've tabled the table.
Oh there are exceptions, even for me. I have a chance to sit with a family and have dinner when I'm visiting my daughter. We even have conversations -- this is when we can get a word in among the energetic chatter of my 5 year old grandson.
And one of my greatest pleasures these days is getting together around a table with my women friends, which I can't do very often because they live too far away. But when we meet, it's always around a table where we spend hours eating and laughing, talking politics and movies, and men.
And so when the following poem from Jim Culleny appeared in my in-box, I couldn't help but be moved by it.
Perhaps the World Ends Here
Joy Harjo
The world begins at a kitchen table. No matter what, we must eat to live.
The gifts of earth are brought and prepared, set on the table. So it has been since creation, and it will go on.
We chase chickens or dogs away from it. Babies teethe at the corners. They scrape their knees under it.
It is here that children are given instructions on what it means to be human. We make men at it, we make women.
At this table we gossip, recall enemies and the ghosts of lovers.
Our dreams drink coffee with us as they put their arms around our children. They laugh with us at our poor falling-down selves and as we put ourselves back together once again at the table.
This table has been a house in the rain, an umbrella in the sun.
Wars have begun and ended at this table. It is a place to hide in the shadow of terror. A place to celebrate the terrible victory.
We have given birth on this table, and have prepared our parents for burial here.
At this table we sing with joy, with sorrow. We pray of suffering and remorse. We give thanks.
Perhaps the world will end at the kitchen table, while we are laughing and crying, eating of the last sweet bite.
Is that the way it was done before nursing homes and hospices, before miracle drugs and transplants, when old folks died slowly at home, their sons and daughters and grandchildren and cousins all taking turns taking care? The frail old ones, dying only from the final stresses of age and gravity, moved slowly and silently, sleeping through most of those last months, last weeks, last days. Relatives came and went, stayed and shared, while the old ones slept and dreamed and waited, and that was the way it was finally done.
But there are only two of us here to keep watch, to take care. Each day she is more tired, asks to sleep more and more often. Awake, she sits sad and silent, eating slowly in front of the television that she can barely hear anyway. I sometimes still hold her and dance with her late at night, when she's afraid and won't sleep. Sometimes I sleep with her to make her feel safe. Sometimes, no matter what we do, she's up and down all night, wants to eat, wants to go home. "Please, please," she mutters, unable to tell me what exactly would please her.
Someone cracked my rear passenger side bumper, and I have to go and get an estimate so that I can get it fixed. But then what. My brother would have to get my mother in his car and come with me to drop off (and then pick up) my car from the body shop. It is hard to believe that we know no one around here who can help with that chore so that we wouldn't have to put my mother through that. I don't even think that there are taxis in this little town. At least I've never seen any. I think I'd better start checking that out.
This is not the way it's supposed to be done -- without friends, without extended family, without a support system. But this is the way my brother insists, and I am too tired to argue any more.
I'd better check the phone book for taxi services.
And I'm still purging and packing and planning. While I cook, and feed, and clean, and sit, and hold, and hope.
ADDENDUM:
Whaddya know. There IS a taxi service right in town! Family or friends would be better, but I'll settle for a taxi when it comes to getting my car fixed.
No other work of my childhood, and to a very large degree almost entirely at an unconscious level, likely did as much not just to steer me to an eventual appreciation of science fiction, but to an almost innate understanding of how deeply art in general, whether words or pictures or sounds, could implant itself into a person.
So nearly ends a beautifully written memoir by b!X about the death of Arthur C. Clarke and the influence that the movie 2001: A Space Odyssey had on his childhood aspirations and imagination. You should click here and read the whole Star Child post.
Like my son (and, actually, the whole of our family -- my daughter's wedding cake was topped with Luke Skywalker and Princess Leia), I, too, am a lover of the kind of science fiction that not only opens up possible new worlds, but also explores the kind of human spirit that will be necessary to make the best of those worlds.
My first exposure to sci fi was C.S. Lewis' Perelandra, upon which I stumbled by accident in my Catholic high school's library. As far as I was ever able to tell, it was the only sci-fi book on the library shelves.
I don't remember the sequence of my growing love of sci-fi, but I do remember watching Clarke's movie when it first came out -- a night out with my then-husband and another sci-fi fan couple. Our daughter would have been about 5 at that time; I don't remember her being with us.
But I do still remember the sounds, the visuals, the bone flung into the air that became a space ship, the appearance of the megalith, that last breath-stopping image of the Star Child.
Soon after every birthday, I take a photo of myself. My 68th birthday was last Tuesday, and here I am, way past the time when I would normally touch up my hair color. I've begun to go gray:
I took this photo with a new webcam that I just hooked up so that I can video conference with my grandson, who will soon get, from me, one of those indestructible XO laptops that are no longer available for private purchase. It comes equipped with a webcam. In order to buy one for him, I had to buy one for a child in a 3rd world country.
I went to visit my kindergartener grandson and family last Sunday, and I'm sure that, as a result, I have a few more gray hairs. By the time I left on Tuesday, both my daughter and grandson were seriously sick with sinus infections and the construction of a second floor had begun on their home. After I left, the workers had accidentally put two sizable holes in their first floor ceiling, letting the cold in and further endangering their health. You can read about the fiasco on my daughter's blog.
I wish I could have stayed to help out. My son-in-law has his hands full. He even had to take time off from work because my daughter now has laryngitis and can't talk at all. Just imagine how that works out with a chatty 5-year old.
This is for you, my offspring, both of whom have the gift of insightful sight.
Snapshot
Charles Tomlinson
for Yoshikazu Uehata
Your camera
has caught it all, the lit
angle where ceiling and wall
create their corner, the flame
in the grate, the light
down the window frame
and along the hair
of the girl seated there, her face
not quite in focus —that
is as it should be too,
for, once seen, Eden
is in flight from you, and yet
you have it down complete
with the asymmetries
of journal, cushion, cup
all we might have missed
in the gone moment when
we were living it.
Thanks to Jim Culleny's daily poetry emails for the above poem.
When she's on her 16 hours-awake binge, she talks in rapid fire nonsense, can't stop moving. If I can get her to sit down and eat anything, her foot taps on the floor like an idling motor, just waiting for the gas pedal to be depressed.
She opens drawers, moves her belongings around so that, later, I can never find what it is she decides she wants. She bends over and roots around in the bottom of her closet, packing and unpacking her shoes into a duffel bag. When she stands up, she's on the verge of falling over. Her back hurts. Her arm hurts. But I can't get her to stop. She is driven by her dementia.
Sometimes she will sit long enough to eat something, sometimes not. She rants about people stealing her money, her shoes, her dishes. It doesn't help that I show her the shoes, the money, the clothes. She is beyond reason. The world is dangerous and deceptive as far as she is concerned. She refuses to take any of her meds, and that only makes things worse. Eventually, she will collapse and sleep.
After sleeping away most of the past few days, she again started in with her manic behavior this morning. I slipped her med into her mouth (it dissolves on her tongue) and in fifteen minutes she had calmed down enough to have some of her fake coffee and toast.
And then she went back to sleep and is still sleeping.
She says she always feels cold, even under her electric blanket.
There is so much I should be doing to clean up my own space, to keep on with the purging of stuff. Instead, I shuffle around, waiting for the electric eye alarm to go off to let me know that she is up.
I am not used to living in such personal stasis. I have always courted change, created it if necessary. Here, my days are caught up in the cycles of her dementia.
In slow motion, I plant seeds, shred mounds of old paper files, watch my hair grow out gray. If I can just keep moving forward in these small steps, keep making small changes, I will survive.
I've been trying to find the time to plant the seeds I want to grow for my planter garden this spring. (No more dig-in-the-earth garden, where pests of all sizes devoured what I had last year.)
The sunny day seemed auspicious for planting, so I got out my supplies and got to it.
I planted seeds for flowers that might not be too tasty to the critters who munched and lunched here all last summer. Mostly, I planted ornamental hot pepper plants -- colorful fruit and foliage, and inedible by, or unappetizingly firey to, any living creature. But they sure do look pretty in pots.
Perhaps the full lunar eclipse tonight will also mean that it is an auspicious time for planting seeds. I guess I will find out in a few weeks time.
Meanwhile, I hope this also is an auspicious time to open up my CPU and insert more RAM. I printed out instructions, and am ready to tackle another project I've been waiting to find time to do.
My mother has had a few days of either sleeping for 16 hours straight or being up for 16 hours straight. Her 92nd birthday was on Monday. On Tuesday, we had a local Polish Catholic priest over for lunch. They knew each other well back at the old parish in Yonkers. She doesn't remember him. But he remembers her and tried to talk to her about the old days. She sat and listened, and the only thing she seemed to be able to say was "How long have you been here?"
She is growing smaller and lighter, a drying pod waiting to fall.
I can't remember when the last time was that someone sent me a Valentine. And it's apparent, as I continue to sort through all of the stuff I've been carting around all of these years, that I didn't think any that I got in the past were important enough to save.
Except for this one, from about 28 years ago, by the little guy who still thought is was OK to give his mother a Valentine card:
It's six o'clock on Sunday. My mother went to bed around midnight last night, and she's still sleeping. That's 18 hours.
We tried to wake her up, but she only mumbled something about her whole body aching. We check her periodically to see if she's still breathing, the way new parents do with their new baby.
I take a shower and wash my hair and make sure I have all her medical information is ready. In case.
What if she sleeps through tonight. Do we take her to the hospital. Do we just keep an eye on her and wait until she wakes up by herself. If she does. What if she doesn't.
These are questions, but I write them as statements because no one has the answers. It's one day, one hour at a time.
I spent hours this morning, while she slept, shredding old bill statements, throwing out things I'll never use and probably no one else will, packing up more books to take to the library, and filling bags of odds and ends for the Salvation Army.
I am letting go.
Is she, also?
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She woke up at 8 pm, weak and disoriented. I got her to take her meds, and then I fed her some Jello. And then some homemade turkey soup with pastina. A cup of her fake coffee and a couple of cookies later, she felt better. It's now after midnight, and she's still up and weepy again. My brother is watching tv with her. I need to sleep, because I'm sure that, when she's finally ready for bed, I'm going to have to lie down with her.
What do they do with dementia patients in nursing homes who won't go to sleep and want to go home?? That's not a rhetorical question.
The following poem is from one of Jim Culleny's daily poetry emails:
Mother to Son
Langston Hughes
Well, son, I'll tell you:
Life for me ain't been no crystal stair.
It's had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor
Bare.
But all the time
I'se been a-climbin' on,
And reachin' landin's,
And turnin' corners,
And sometimes goin' in the dark
Where there ain't been no light.
So, boy, don't you turn back.
Don't you set down on the steps.
'Cause you finds it's kinder hard.
Don't you fall now
For I'se still goin', honey,
I'se still climbin',
And life for me ain't been no crystal stair.
Every year, On June 17, our family commemorates b!X's arresting crime spree.
It was 1987, and he and some of his friends were celebrating graduating from high school. Only they made the mistake of celebrating by lighting firecrackers late at night in the schoolyard of a local Cathlic School. There recently had been vandalism in some neighboring schoolyards, so the cops were on the lookout. Wrong place, wrong time, wrong kids.
And so we all went to court, and b!X got community service. But that wasn't the bad part. The bad part was getting handcuffed and tossed into the back of a patrol car and having the police wake your mother up at 3 a.m. to tell her to come and pick up her son at the stationhouse.
I wasn't even mad when I saw him walk through the door that led to the back of the police station. I was just relieved that he was OK and that all he did was get caught shooting off illegal firecrackers.
Any trouble that b!X has gotten into since that time has been more the verbal kind, and this little cartoon of him that I attached to the firecrackers was once published in a Portland area newspaper But at the other end of the arm was a computer.
So, sonb!X, in loving remembrance of the gray hairs you gave me that night, 20 years ago:
