calling all friends of mine — and b!X’s

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:
broken.pngFlickr 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.

gone fishin’

gone fishin.jpg

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.

waiting for Grammy

waiting.jpg

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.

a day in the life

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 ate 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.

seeing circles

The poem below by Billy Collins (one of Jim Culleny’s daily poetry emails) makes me sad and angry and wistful and hungry.
I’m not hungry for sweets. I surely eat enough of those.

Rather it’s a soul-deep hunger for the solitude to watch circles become salt, to reach for and conjure the words that make magic of metaphor.

And so I am angry that with each passing year I have had to move farther and farther from that place where destiny can be designed. And I am sad because those years can never be recovered. And I am wistful, finally, because that is what comes of and with age and the utter exhaustion of being someone else’s keeper.

Design
Billy Collins
I pour a coating of salt on the table
and make a circle in it with my finger.
This is the cycle of life
I say to no one.
This is the wheel of fortune,
the arctic circle.
This is the ring of Kerry
and the white rose of Tralee
I say to the ghosts of my family,
the dead fathers,
the aunt who drowned,
my unborn brothers and sisters,
my unborn children.
This is the sun with its glittering spokes
and the bitter moon.
This is the absolute circle of geometry
I say to the crack in the wall,
to the birds who cross the window.
This is the wheel I just invented
to roll through the rest of my life
I say
touching my finger to my tongue.

I had the last word

Who doesn’t like having the last word, and this time it was mine at the end of Ronni Bennett’s great essay on elderboggers, Put It In Writing, published today in the Wall Street Journal. You can’t get to the essay online, so Ronnie had to send it in an email to those of us she mentioned in case we don’t subscribe to the newspaper, which I don’t.
Interestingly enough, the Journal began the printed version of Ronni’s essay with a quote from my quote. So, here I am, the alpha and the omega.
On Ronni’s blog, Time Goes By, she mentions the essay and shows the great graphic that the newspaper included.
Ronni will be having occasional articles on aging and retirement for the Wall Street Journal from now on. Congratulations, Ronni.
And thanks for giving me the last word.

I blog to connect with the world outside myself
that I’m trying to make sense of.
I blog to keep up my spirit;
to stir the spirit of others;
to stir my blood, my brain and my beliefs.

ADDENDUM: I discovered that you can read the whole great article by going here and then clicking on the story title, “Put it in Writing.”

nostalgia runs rampant

I’m caught up in a wash of nostalgia these days, with friends I haven’t been in contact for a long while emailing photos with messages saying “Were we ever that young?”
And so this poem, one of Jim Culleny‘s dailies, reminds me of just how young I once was and how much has happened since.

In Memory of Radio
Amiri Baraka
Who has ever stopped to think of the divinity of Lamont Cranston?
(Only jack Kerouac, that I know of: & me.
The rest of you probably had on WCBS and Kate Smith,
Or something equally unattractive.)
What can I say?
It is better to have loved and lost
Than to put linoleum in your living rooms?
Am I a sage or something?
Mandrake’s hypnotic gesture of the week?
(Remember, I do not have the healing powers of Oral Roberts…
I cannot, like F. J. Sheen, tell you how to get saved & rich!
I cannot even order you to the gaschamber satori like Hitler or Goddy Knight)
& love is an evil word.
Turn it backwards/see, see what I mean?
An evol word. & besides
who understands it?
I certainly wouldn’t like to go out on that kind of limb.
Saturday mornings we listened to the Red Lantern & his undersea folk.
At 11, Let’s Pretend
& we did
& I, the poet, still do. Thank God!
What was it he used to say (after the transformation when he was safe
& invisible & the unbelievers couldn’t throw stones?) “Heh, heh, heh.
Who knows what evil lurks in the hearts of men? The Shadow knows.”
O, yes he does
O, yes he does
An evil word it is,
This Love.

he can’t go home again

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.

in good company

Deborah Harry (that’s Debbie Harry of Blondie), now 62 years old, proudly sports a swath of gray hair.
And, according to Ronni at Time Goes By, a bunch of gray-haireds who are my kind of people are rocking Northampton Massachusetts:

YouTube has the movie trailer and a whole lot more music video clips. These will get you up and moving, and reminded that you’re never too old to rock ‘n’ roll.

Just watch them offer their rendition of Donna Summer’s “I Will Survive.”

is that the way it was done?

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.