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.

how are things in Glocca Morra

That’s been my ear worm for the past several days. The song is from the 1940s stage musical “Finian’s Rainbow.” How Are Things in Glocca Morra?
When I hear that song, I am back in my little cocoon of a room where my asthma has me ensconced for days on end listening to the radio and playing with my endless supply of movie star paper dolls. The sun is shining through the sparkling window panes, opened just a bit to let in the fresh air. The room is filled with my breath and my music and an otherwise silence that negates any stress. My imagination takes me wherever I want to go, and the music on the radio is my magic carpet.
Even today, as the ear worm circles through my brain, somewhere deep inside me, I retreat into a safe, secluded place, where the sun shines through clear window panes and I am left to conjure a life of peace.

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.

reluctant reentry

mewindow.jpg
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.
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in support of melancholy

From here:

I do, however, wonder why so many people experiencing melancholia are now taking pills simply to ease the pain. Of course there is a fine line between what I’m calling melancholia and what society calls depression. In my mind, what separates the two is degree of activity. Both forms are more or less chronic sadness that leads to continuing unease with how things are — persistent feelings that the world is not quite right, that it is a place of suffering, stupidity, and evil. Depression (as I see it, at least) causes apathy in the face of this unease, lethargy approaching total paralysis, an inability to feel much of anything one way or another. In contrast, melancholia generates a deep feeling in regard to this same anxiety, a turbulence of heart that results in an active questioning of the status quo, a perpetual longing to create new ways of being and seeing.

[snip]

Melancholia, far from a mere disease or weakness of will, is an almost miraculous invitation to transcend the banal status quo and imagine the untapped possibilities for existence. Without melancholia, the earth would likely freeze over into a fixed state, as predictable as metal. Only with the help of constant sorrow can this dying world be changed, enlivened, pushed to the new.

Poets are friends with melancholy. All artists are. Probably scientists as well.

rooting around

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
When I am old.

Note: The Slop was a dance from the fifties. I had to google Jake Trussell and I still don’t remember. But I still like rock ‘n roll. And convertibles. And I’m still known to ogle lifeguards.

down but not out yet

What is my problem!!
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.

what the hell is that on her head?

My mom is sitting down at the table having a cup of her fake coffee. AsI look down at her, I notice a thick smear of something light green stuck in her hair. Huh?
So, I touch it. It’s sticky. I smell it. It smells minty. Aha!

Toothpaste!

I have to admit it. I laughed a lot.

She has a spot on her scalp that always seems to itch her. When she tells me about it, I put Scalpicin on it, and that helps. I guess this time as she combed her hair in the bathroom mirror, she picked up the first thing that looked like an ointment tube and rubbed it on the itch.

The last time she rubbed something strange on her body, it was on her lips and they swelled to the point where I had to take her to the doctor’s. As far as anyone could tell, it was an allergic reaction to something, and I think she had been rubbing her 30-year-old Lancome cream on her lips. I cleaned out her beauty lotion drawer and it hasn’t happened since.

She always seems to be fidgeting. Mostly she takes sheets of Kleenex and folds them into squares and loads her pockets with them. She insists on having tops and pants with pockets. Sometimes I miss emptying a few when I do her laundry. Even if I use those scent-free dryer softener sheets, those little bits that stick to the clothes are a bitch to pick off.

She would love to fold blankets and other larger squares, but she has a torn muscle in her left shoulder. Not only can’t she raise that arm, but the whole shoulder is painful, even though she’s had a cortisone shot. After Thanksgiving, I am going to arrange for a physical therapist to come over and help her with that arm. I think I finally found a place that is certified for Medicare.

Very often, she snaps. No, literally. She snaps and unsnaps those closings on the tops I buy her so that they are easy to get on and off. Last night, she was desperately trying to snap closed the edges of a very old pillow case that she had long ago sewed snaps on to keep closed. (I guess she’s always been obsessed with snaps.) When she went to sleep, I resewed the ones that were coming off and sewed on a few additional snaps so that she could have yet another snap-happy fiddle thing.

Actually, I found a site on the web where you can buy fidget things for people with dementia. Other sites suggest these stress-reduction toys. My mom will not fiddle with toys. She will only fiddle with things that are familiar to her; things that she has used in her role as wife and mother. Safety pins are one of those things. She finds them and pins them to the inside of her slacks. The other day I found her picking her teeth with the point of a large safety pin. She has a drawer full of various dental picks that I bought her. But she uses a safety pin. Sigh.

I spend a lot of time Googling for ideas on how to calm my mother, since her fidgeting is associated with her nervousness and anxieties. As a result, I sent for a really soft furry teddy bear and made a sweater for it with a Polish logo. You’ve heard of Polar Bears? Well, this is a Polish Bear:

bear.jpg

I thought that stroking the bear’s fur might relax her. I thought the Polish theme would attract her. Nope. She knows it’s a toy. Cute, but no cigar.

Well, I tried.

In another day I’m planning to try to leave to go to my daughter’s for Thanksgiving. Actually, I’m going no matter what. I don’t know how my brother is going to manage, but I’m leaving enough food, clean underwear, desserts etc. so that my mom will have whatever she needs. He just has to make sure that she gets it all.
I can’t wait to see my grandson, who has been unofficially adopted by the guys in the local firehouse that his mom takes him to visit periodically. The last time he was there, they gave him a piece of real fire hose (including nozzle) and a door chock (whatever that is). His firefighter suit, of course, is compliments of Grammy.

firelex.jpg

He wants to be a firefighter when he grows up. Also the owner of a tree-cutting service. Or a road construction worker. Or some kind of para-medic/rescue worker.

I think he’s going to spend Thanksgiving rescuing his Grammy.

Lililth in the Darkness East of Eden

lilith in the darkness.jpg

If you’re familiar with Kalilily Time, then you know who Lilith is. The image above is from here, a treasure trove of Lilith images. Lililth was said to be banished by god into the darkness east of Eden.

If you read the previous post, it should be obvious why that image resonates with me tonight.

I think of the days when this one would have been the Lilith image that spoke to me. And I think of the time when, again, the crone in me will fire up and fly away.