One day it was a visit to the dentist (me). The next, the doctor’s (me). The next a screaming meltdown (me). I’m having some weird symptoms — head rushes accompanied by a fog that drifts over the lower part of my right eye. Next week I’ll go for a neck sonogram and a blood test and see what they turn up. I imagine it’s just stress. Did I say JUST stress????!!!
I’m making every effort to take care of myself while we try to take care of my mother. She’s eating very well but is still weak. And her ability to focus mentally on anything continues to wane. She wants to talk incessantly because that’s all that she seems able to do, unless she goes into her bedroom and moves things around in her dresser drawers — which my sibling thinks she shouldn’t do (he wants her to sit and watch tv and rest) but I think is better for her than just sitting and sleeping all of the time. When we sit together, she drives me crazy telling the same stories over and over, asking the same questions, confusing situations and people… I’m getting to the point at which I can’t stand spending time with her when I don’t have actual caregiving chores to do. Those I actually don’t mind. I like to be busy.
When she goes to her follow-up doctor’s appointment next week, he will give us a referral for some home care that Medicare will pay for. What she needs more than anything is a companion — someone without the baggage I still carry around who might even find her an amusing and charming little old lady. I have never found her either, and I can’t get past that.
I do try. I really do. Every day if she feels up to it (and the idea always seems make her a little more chipper), I turn on the CD player and spin some of those oldies that a college chum sent me and some slow polkas that our cousin down in Florida sent us, and we do some small dance steps around the living room. I let her lead. She likes to do jitterbug turns under my arm, but much more slowly than they are supposed to be done. She smiles. I smile. She is up and moving and she doesn’t need to talk. The music makes us both feel better. Dancing is the one thing we both like to do.
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The comments I keep getting from blogger friends also makes me feel a lot better. And I also get encouraging comments and emails from non-bloggers who have googled something they were interested in and found my site by happenstance. And, of course, of course, my family. It all makes a difference in helping me keep on keeping on. It really does.
So, thanks to Shelley the Burningbird, and Maria at Alembic, and the divine Betsy, and tamarika, and to all of you non-bloggers who also keep me in your thoughts.
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I keep thinking that I always have the choice to turn around and walk away from all of this. Maybe that’s what keeps me here — knowing that I have the choice not to be. In my mind, I put myself in her place, in her head. It’s scary. Really scary. I keep telling myself that I won’t become like her. I’ve lived a different kind of life, physical, mental, creative. I will not allow myself to become bored; there are too many things I like to do. And I can do lots of them sitting down, if I’m limited in that way. If I keep using my mind, use it so that I don’t lose it, maybe I won’t be stuck someday driving my own daughter crazy telling the same stories over and over, asking the same questions, over and over, and confusing past, present, and fantasy.
Please, please. I hope.

I guess I’ve been a little surprised by the outpouring of support from so many of my fellow bloggers, especially those from the “old blodays,” those I was sure had forgotten about me.
Like prolific Mike Golby so far away in South Africa. I used to read his blog all of the time, even though I often got lost in his erudition. What a warm surprise it was to read his comment.
I wasn’t surprised but was just as pleased to hear from Dave Rogers, with whom I shared a few beers just about a year ago in Albany. He is much more widely read than I’ve ever been, even in the best of my gloryblog days, and I’m sure his mention of my current situation in his own weblog was instrumental in others tracking me down.
I certainly was not surprised to hear from Jeneane Sessum, sister Blogsister, and my very first blogfriend. Jeneane also emailed me the following, which she got from here:
Carers Wish List
I wish:
I could watch a television programme all the way through
I could go to bed when I want to and sleep through the night
I could get up when I want to
I could do something on the spur of the moment
I didn’t have to watch the clock for tablets and toileting
I didn’t have to worry all the time about the person I care for
I wish things could be as they were.
Yes, that sounds about right to me.
In checking out Jeneane’s recent posts (which I don’t do often enough lately), I also noticed on that she was reminiscing
about those good ol’ blogdays when we were all leaving voice mail messages on Gary Turner’s phone over there across the Atlantic, and then he would have them available to listen to on his weblog. Back then, blogging was full of fun stuff like that………
……..to be continued
There are other blogger friends I’d like to link to in thanks for their comment-encouragement, but it’s now 1:30 a.m., I’ve already had to get up and get my mom to the bathroom three times and the last time she wanted to get up and have something to eat so we did. On top of that, I’m still not familiar enough with using this laptop, and so it takes me twice as long to post something from it. I started this post somewhere around 11p.m. Two hours later, and I’m still plodding along.
When I continue, I will share more about my mom and how we danced the Oberek tonight and had some good laughs. She seems to have some strength and energy back. That’s a bit of a surprise.

While mom sleeps, I watch “Ballroom Bootcamp” on TLC. Three women, who have never danced before and who are variously overweight, are learning to Tango. One is a lesbian mother, one a stay at home mom, and one a chubby young woman in her twenties.
Before I stopped ballroom dancing three years ago and started gaining weight, I was learning the Tango. Watching these women embrace their poise and grace and, as the young woman explained –her “Diva Attitudel” — I am missing mine. It is torture to watch them doing what I still want to do. They become exquisite.
As they dance competitively, dressed and made-up to the nines, I sit here in the same pajama pants and big shirt I’ve been wearing and sleeping in for two days now. I am reminded how much clothes often — if not make the woman — make the woman’s attitude.
I think I’ll send for the magic omelette maker that was advertised during the commerical break.
So mujch for Diva Attitude.
My time will come again.
But for now, here’s hoping for a Happy Hogmanay.

It’s 3 a.m. She’s up. Wants us both with her. Wants to sit at the table and talk and eat. I think she thinks she’s going to die before morning. The cat is sleeping somewhere, hidden, in her room.
So we sit with her, at the kitchen table, and listen as she talks, non-stop, in a voice so weak that we can hardly hear. She wants me to have her hats and some suit that she seems to be fond of. She talks of the past, of people in her past. She cries a little. Thanks us. Says we are angels; knows we’re her kids making up for all the rotten things we’ve done over the years. We give her a Tylenol. She takes nothing stronger than that for pain.
In an hour, she’s ready to go to sleep again. I know that she will be up, every hour on the hour, to go to the bathroom, and we will have to help her. Yawn. So much for a good night’s sleep.
When she wakes close to noon, she seems surprised to find that she’s still alive. She is weak. Unsteady on her feet. She gets up and sits in her recliner for a while, eats some eggs, and goes back to sleep.
I get on the phone to find out how we might be able to get medical help at home. Other kind of help is easier to get, but it’s the medical support that we really need. She doesn’t want to have to go back to a hospital, and we don’t want her to either. We’ll take advantage of the caregiving help, too.
I finally find someone who can explain the process. But, of course, it’s the holidays, so I can’t get to anyone in charge until Tuesday. She has a neurologist appointment on Tuesday, and I have no idea how we will get her dressed and out of the house and into a car.
My cat, Calli, keeps trying to sleep next to my mom, but she doesn’t want my chubby feline on her bed. Calli eats a little, follows me around, keeps trying to sneak into my mother’s bedroom.
I read. I knit. I sit and blog while my brother sits with her. Tomorrow is New Year’s Eve.
This is the way the year ends; this is the way the year ends. This is the way the year ends — not with a bang, but a whimper.

I knew it was there; I just kept ingoring it, figuring, you know, manana.
I did the daring deed today — opened up the container, scooped it all out with a paper towel, tossed it in the trash. Some things only get worse manana.
And then there are some things that just sit there, static and staionary, until you finally tackle them. Like the boxes of odds and ends I upturned looking for extension cords, heating pads, velcro, hooks — all in an effort to facilitate my mom’s life at this point. It will be a while before they get tackled, I’m afraid.
And then there’s the rosemary and wine marinated boneless leg of lamb that I was suppoed to cook for Christmas Day. Oy! No manana. Do it now or freeze it, and it just won’t be as tender after it’s defrosted. So, I put the roast on a spit in the rotisserie/convection/double burner table-top oven I bought when I moved. (Huh! NOW it’s on sale; I paid a third again more when I bought it. )
Oy! So lambdelcious. Crispy outside, succulent inside, redolent of rosemary. I sit down by myself (my mother is barely eating anything and my brother is a vegetarian) and stuff myself with lamb and sweet potatoes and salad. Went through all that trouble just for myself. And it was worth it.
How can I stuff my face while my mom is lying in the next room, barely able to get up and eat a little soup every once in a while, you might wonder. (I made a big pot of beef oxtail soup with all kinds of veggies, including potato skins for the potassium and [my secret to great beef soup] a can of V-8 juice instead of tomatoes. Then I strain it all out and wind up with a most nutritious broth.) Food is love.
While I’m engrossed in food today, my cat has not eaten at all. Instead, she finds places to hide in my mother’s room. When I carry her back to my space and put her in front of food, she runs back to my mom’s. Is she sick too, or is she super empathetic? My first cat, an independent and non-affectionate male, would come and snuggle up next to me and purr whenever I wasn’t feeling well. Somehow they know.
Lamb on a spit and moldy guacamole. A little delight and a lot of entropy. Ah, life.

“That Elaine was shit, she says.”
“I’m Elaine, Ma,” I say.
“No,” she says. “I mean the other Elaine. She wants to be with her four girlfriends. She has no use for me. You’re good to me. You are like my mother.”
Before we moved here, before she began declining so rapidly, I used to try to get out at least a couple of times a month– meet friends for dinner or a movie. I could tell that she wanted to go with me, but I ignored her hints and grabbed whatever time for myself that I could. Since I wasn’t totally dedicated to her, apparently she thought I was a shit.
That “other” Elaine — the one who had a life. In her mind, the Evil Twin.
She’s rallied a bit, but the hospital experience has left her with residual aches and pains. So I still sleep in the next room. My brother has rigged up an alarm that sounds when she gets out of bed. She’s still a bit unstable on her feet, so I get up at night to help her get to the bathroom.
This is the good Elaine, the one whose life revolves around her mother. Just what my mother always wanted.
Meanwhile, I’m getting the hang of my bread machine — made a delicious loaf of Russian Sweet Bread, which is similar to the bread my mother used to make around the holidays. Half of the loaf is gone already. Tomorrow I will make more and also roast the marinated boneless leg of lamb that was supposed to be for Christmas Day dinner. Good thing I like to cook.

so then there’s b!X, having a very Hunter S. Thompsonesque Xmas.

It can’t have just all happened in three days! I guess having a total of ten hours’ sleep over three nights tends to distort one’s sense of time.
I’ll begin at the end. It is 3 p.m.. My mother is back home, sleeping in her bed, exhausted and sore from Christmas in the ICU nightmare. A the moment I’m sitting in her electric recliner, my laptop warming my thighs and a heating pad warming my lower back.
Did you know that when you get a blood transfusion, they also give you, intravenously, a diuretic named “Lasix,” which releases the body’s stored potassium along with the urine. I didn’t know that, and they didn’t tell us. I do know that a low level of potassium in the body can cause traumatically painful leg cramps. I did give them a list of the medications that my mother takes, a list that includes several prescriptions for neurological problems — hers being severe leg cramps. So much for informed consent.
So, after the barium swallow etc., the CAT scan, and the X-ray, after the unsuccessful attempt to stick a tube down my mother’s nose into her stomach, after all the colonoscopy discomfort and intrusive exploration of her upper GI tract, after the countless blood tests that turned her into a human pincushion, they concluded that
1.Her “blood count” was a little more than half of what it should be
2. She is bleeding internally somewhere.
3. She has diverticulosis but no obvious place where that condition would result in internal bleeding.
4. The rest of her GI system is fine.
With not “enough” blood to fuel normal physical and mental functions, no wonder she was too weak to walk and talk coherently.
So they gave her blood– four IV bags of it and added the Lasix and saline. And they stuck a catheter in her to catch and measure her urine and wires all over her chest to measure her heart and oxygen levels.
And then the leg cramps started. Excruciating cramps that exhausted her and us as we held her almost dead weight while she tried to stand. Everytime she sat down, the cramps would start again. She thrashed with pain, irritating the places where the IV and catheter and electrones were attached.
In the middle of all of this, they held her down and gave her another blood test to check her potassium levels (duh), and then, procedures followed, they finally gave her a few potassium IVs But it was too late. Nothing would stop the spasms in her leg muscles that went on and on despite various drugs and finally morphine. Even the morphine couldn’t knock her out. For two days, she was in a living hell of pain.
They finally allowed her to take her Quinine prescription, but they told her not to take one of the other meds she was taking for the cramping problem.
And so, at 5:30 this morning, we announced that we wanted all tubes and wires off her and we were taking her home, against medical advice. I signed the papers that had me take full responsibility for whatever happened next, and we wheeled her out to the car. She slept in my arms all the way home. We pretty much had to carry her out of the car and onto the chair in which I now sit.
Shaking with cold with morphine withdrawl, she managed to get into bed, and I covered her with two fleece blankets and a quilt and put a heating pad on her feet.
I headed for her electric reclining chair, where I also fell asleep for a short while..
When I woke up, she was up and dressed. Teary-eyed, she hugged me and said she loved me. She still ached all over from the residue muscle pain of the leg cramps.
What happened to me, she asked. Do you remember being the in hospital, I asked. No, she said. What happened?
She doesn’t remember the hospital nightmare, which is all for the best.
I get onto Google and search for foods that contain potassium — foods that she can eat, given her current GI state and her diverticulosis. Chicken and potato skins, I find.
I peel two potatoes and boil the skins in some homemade chicken broth that I defrost. I dice the potatoes and microwave them with a little water. I add the potatoes to the strained chicken broth and toss out the cooked skins. The minerals from the skin are now all in the broth anyway.
She eats the whole bowl and goes back to sleep.
And so I end this post where I began, typing into my laptop.
I add this warning to all those who have older parents who wind up in the hospital. If you don’t stay with them, you don’t know what is being done to them. Hospitals have procedures that must be followed, and sometimes those procedures wind up causing more problems than you brought them in to have fixed. You expect the doctors and nurses to truly treat each patient as an individual and carefully integrate what they plan to do with what the patient is already dealing with, including meds. Don’t count on it.
Modern medicine saves many lives. One of my cousins just got diagnosed with cancer that must be operated on. I hope it saves hers.
And I’m still hoping we will find out how it can alleviate my mother’s pain.
ADDENDUM
I thought I was done with this post, but here it is, 2 a.m., and we just got her back to bed after a run to a larger hospital’s emergency room because her leg cramps again became so unbearable. By the time we got there, the cramps had subsided, but she was barely able to stand up after not really having slept for three days. They ran blood tests, which came out fine. Told me to put her back on the meds that the other hospital ignored, gave her a muscle relaxant, and gave me the name of a neurologist so that we can figure out all that is causing the leg cramps.
Finding the right and good doctor is such a crapshoot (as is everything else in life, I guess).
So, now, finally to bed, with a heating pad for my own spasmed back muscles. I don’t think any of us will be getting up early today.

I can’t get the smell of the blood out of my awareness. I’ve showered, washed my hair, changed my clothes — but it’s still with me, sourly red and black, just as it was left at the bottom of the portable commode they placed beside her bed. As soon as they removed it, she just contributed more. I found myself gagging at the stench, but somehow I managed to block it out and help to clean her up. Yes, the daughter becomes the mother.
I have no idea when it really started, her internal bleeding. And, even after that traumatic battery of tests they administered to check out her gastro-intestinal system, they still don’t have a definitive cause. Four bags of blood later, they continue to check to see what her blood level is at. For a while, she was eliminating it almost as fast as it was IV-ing in. She is in the Intensive Care Unit and she’ll be there until they release her.
She is, literally, drained, and her disorientation and anger has escalated because of the pain and discomfort she has had to endure. After the testing procedures, the bleeding seemed to have stopped. I just got a call that it started again. .
What was my choice? To have just kept her home to begin with, weakening and in pain, not knowing exactly what was wrong, incoherent and terrified, until, just shy of her 90th birthday, she gave in, gave up, gave out?
If her blood level remains constant, they will send her home, and it’s entirely possible that she will come home and the whole thing will escalate again. If they have not found a defect, a problem that can be treated in some reasonably non-invasive way, I will be faced with the same dilemma all over again. And we will again be reeling from the stench of those red and black leavings, that smell of bloody decomposition.
And if it happens again, I think I will think that it’s time to make the hard choice.
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Meanwhile, it’s Christmas Eve, and I am home alone, having left my brother to keep vigil at my mother’s bedside. I will go back for another 28 hour stint tomorrow.
Meanwhile, it’s Christmas Eve, and I just had a plate of Polish pierogi with sauteed onions. That’s what my family always had on Christmas Eve — and also barszcz, which is a clear mushroom soup make from dried mushrooms imported from Poland. I never got to make that part. I’ve frozen the two dozen other pierogi that I bought (Millie’s are the most authentically delicious.)
Meanwhile, it’s Christmas Eve, and more than a dozen miles away, my mother is bleeding inside. And there’s not a damned thing anyone seems to be able to do about it.

He made a digital slide show for her of the people who have fed into her life — from her grandparents riding in a haywagon in Poland to her great grandson toddling in Massachusetts. He thought it might help to ground her after several days of episodes that seem awfully like mini-strokes. She has been adamant about not going to the hospital — no tests, no prodding, no surgeries. Whatever will happen will happen.
So, we take turns staying with her as she goes through bouts of crying and panting and starting mumbled sentences that she never finishes. Sometimes she seems to rally, tells us she loves us, repeats “I’ve been a good mother, haven’t I?”
We tell her yes, she has, and we love her too.
“Where are you going?” she asks, afraid she will be abandoned. We’re not going anywhere, we say. We’re staying here with you.
Here I am, ensconed on a pull-out bed in the next room so that I can hear her if she wakes up and needs help. I balance my laptop on my lap while my cat warms my feet.
This will be my holiday — lying with my laptop and my cat, listening for noises from the next room.
It’s a little too much deja vu for us. Our Dad died on the day after Christmas 25 years ago.