it was only a matter of time
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.
But it is only a matter of time.
old bones
She has old bones. And they hurt. Wrist, elbow, shoulder neck. Hip, knee, ankle, toe. They all hurt.
I give her two Tylenol, and she sleeps. I hear her whimper. "Please," she whispers. She's never been able to tell me "Please what?"
Her old bones hurt. Teeth. Fingers. Time makes old bones. Her bones have had too much time.
My bones are starting to hurt too.
home to the sea
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.
And then we left him to the sea.
My photos of the trip are here.
Our daughter's are here.
And our son's are here
With b!X back in Portland, OR, who knows when we will be all together again as a family.
who am I?
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.
Myrln Monday: a daughter grieves
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.
I wonder where the holes Chinese dig
Come out?
Waf jul99
the Russert Rainbow
I haven't seen anything appear through a search yet, but both Brian Williams and Keith Olbermann mentioned that, as the people gathered at the Kennedy Center to honor Tm Russert, a rainbow appeared over the NBC Washington Studios.
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.
No wonder I'm burned out.
the lone crow
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.
I leave tomorrow to join family and friends for my late once-husband's remembrance party. A lone crow, and thoughts of death.
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.
Is he wondering "Is this the place?"
should I or shouldn't I
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.
a birthday uncelebrated
Today would have been Myrln's 71st birthday.
roses
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.
help find this hat???
The whole story is here, but the gist of it is this:
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.)
THIS IS A HAT EMERGENCY!
Well, why not.
W. A. Frankonis condolence page
b!X has set up a way for those who knew Bill to express their remembrances. Go to www.myrln.com. There's an email address.
"seated on waves"
For Bill, who will soon be seated on waves.
The Same
Pablo Neruda
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.
four-day earworm
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.
William Frankonis, dead at 70
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.
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.
going....going.....
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.
a deep sleep
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?
-----------------------------------------------------------------------------------------------------------
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.
