Light and Shadow

In the early morning hours of June, my Japanese maple reproduces itself in shadows on the back of the house, a dark replica.

The charcoal-colored stars move and dance in the morning breeze that blows in from the Bay Area, but you can't touch them; it's only a trick of the light, only real to the eye. The actual tree is as high as the roof, with red leaves in the spring turning green as summer approaches. We watch carefully to see the first tiny red buds in February, lament the scorched edges of the leaves during July's inevitable 110 degree heat wave, stroke the graceful branches when we walk past it on the pool deck.

Nearly three years after my mother's death from Alzheimer's, I'm still working on coming to grips with what the disease did to her. Nothing about Alzheimer's is fair; plaques of a protein begin cutting off brain function, nerve by nerve: memories go, and recognition, and body function. As the nerves are cut off, they die of starvation. The victim is tied into an ever-decreasing circle, populated by ghosts and strangers. What are they saying? Why have they come for me? Is it any wonder that Alzheimer's patients are so aggressive, so angry, so determined to fight? All that's left is that fight or flight response, and there's nowhere left to run.

My God, my mother got so mean when the disease began to take her. She said things that hurt me so badly that I'd cry afterwards -- not even things about me, but just hearing such viciousness coming from her now-husky voice was like a serrated dagger slashing at the figure I'd known and admired most of my life.

I look at the shadows on the wall, the outline of the Japanese maple given a manner of shape by the absence of light. That was what my mother became: not a reality but an illusion. And illusion is not what I should remember. The illusion changes and disappears within an hour; Alzheimer's tormented us for years, but in the end, Alzheimer's need not last. For Mom, it's gone and done, and it can never touch her again. She doesn't need to be a shadow in my mind.

She grew that Japanese maple from seed, for me. The tree is a reminder for Alex of her grandmother's prowess at gardening, and a tangible connection with a woman who was brave and bold. Her daughter, Lillian, has never known life without that tree being there. Four generations of our lineage have touched it.

I want to see the tree first, not the shadows. The living, not the illusion. The creature, not the absence of light. And just as the shadows of the Japanese maple are beautiful in their darkness, maybe someday I'll see the precious glimpse of human frailty in my mother's death.

Rest in Peace

Last night, peacefully in her sleep, my mother-in-law passed away. 

If asked about her relationship with me, she would have assured one and all that we loved each other. ... Well, if that was how she actually felt about me, why, then, by a law of equality, that was how I actually felt about her, too.

Something about this orchid reminds me of her. Frilly, openly lovely, and yet somehow scary. A hothouse flower with a demeanor like something out of a nightmare.

Regina terrorized every one of her daughters-in-law -- and her two older sons had multiple marriages -- with equal venom. After years of persecution, when we wives of her sons compared notes, we finally realized that it wasn't personal, it was just how she felt about anyone who had the gall to marry one of her sons. A couple of us learned never to answer any question in any other way than what she wanted to hear, and learned to live with the tension and question-dodging. She would have told you that she treated us all like gold, and she believed it to the core of her heart. It was just that they were her sons first, last, and in-between. Law # 1: Don't get between Mother and Son, mentally, physically, or emotionally. Period.

Regina didn't believe in friendships, church work, hobbies, pets, or donations to worthy causes. In her view, the woman of the house belonged to the husband, and her whole waking day and her whole sleeping night was supposed to be about that, even though she complained bitterly about her marriage all the time I knew her. Some of our worst conflicts stemmed from my work with the church, my penchant for cats and dogs, my art, our charity, and especially my having the temerity to have friends with whom I walked or shopped or fished or chatted on the phone. She lived in Lewistown (having moved there from Pittsburgh) for more than 30 years, and never made even one chum to go have tea with. Family was everything to her, and she thought every other person in the world should be that way.

Regina believed in hierarchy, and so there was no question of ever calling her by her name. A few years ago, I asked how her twin Edna was doing, and she pointedly stopped the conversation to correct me to say "Cioci Edna" (pronounced Tcho-chi), even though Edna is not my aunt, and why would you expect a fifty-year-old woman to use a title instead of a name, anyway? Well, Regina, here I am, calling you Regina. Regina, Regina, Regina. So there.

Lord, don't let her haunt me for that.

And yet, this bitter, vain, and domineering woman came to my rescue when times were tough, and my mother was sinking dangerously into the mire of Alzheimer's. When my mother didn't recognize me in those horrible days when we were trying to save my sister, Regina came with us and Mom did recognize Regina, and made the terrible situation a lot less awful than it might have been. In the days of Mom's decline, until Mom could no longer have a conversation on the phone, Regina called her every day, sometimes twice a day, to help keep her tethered to a real existence.

My mom didn't believe in friends, either ... except that maybe, though neither one would have admitted it, they were friends.

Thank you, Regina, for being a friend to my mother when she had so few left.

Thank you, Regina, for running interference and offering support when my sister and I needed it so badly.

For that alone, I will be eternally grateful

Good night, Regina, and may your journey be fruitful, and lead you to everlasting joy.

A Mailing Label

After some months of having my desk out in the kitchen (trying to resolve issues with my new monitor), we moved my desk back to our bedroom again.

[The monitor that came (for free) with my desktop computer kept jiggling the display, and dimming from time to time (most annoying when I was trying to work). Moving to the kitchen and a more stable power outlet seemed to help ... for a while. Finally, I switched out my new monitor for my old monitor (a 2003 Sony) that Lillian had been using. My new monitor works perfectly with her computer, and my old monitor is just fine. Not as glitzy, but I don't need glitz.]

As I was moving the stuff from the desk, a mailing label fell out from under the Plexiglas protector. It was a Priority Mail label that I had printed out last spring, so that I could send stuff to my mother. I remember when I addressed it. I'd been sending Mom a dozen freshly baked oatmeal cookies, and when I got to the Post Office, I could not find the label. I filled out another, and sent the cookies. After I got home I found the original label on the floor by my desk where it had fallen. "I'll just use this the next time," I thought, and stuffed it under the Plexiglas.

There was no next time.

Finding the label, and watching it drop into the waste basket ... well, it hurts still, and I miss her. I miss the woman who was always game for a fishing expedition, who taught me how to make the foods she learned from Dad's family, who sewed me beautiful clothes for school.

I hope she has all kinds of fun things to get into in Heaven.

The Long Day

Bernie tells me that tomorrow is not going to be as long a drive as today was. I hope he's right.

We started off at 4 am this morning; losing an hour going from Pacific Time to Mountain Time, we got to Rock Springs, Wyoming around 6:30 pm. For once, we didn't hit a lot of road repair, and traffic was light.

The hot springs at Nightingale Hot Springs, Nevada seemed closer to the road than we remembered, with a lot more steam coming out of the ground. Is the volcanic activity increasing?

There was still snow on some of the peaks south of the highway in eastern Nevada. Not as much as we saw in June, but amazingly, still some.

Just east of Salt Lake City, I saw a strange color on the hillsides. "What could be blooming red at this time of year?" I thought to myself. Well, DUHH, it wasn't blossoming, it was the beginning of Fall Color. We don't get that for a while yet in the Central Valley of California, and rarely if ever such a sweet, bright hue.

Wyoming was beautiful in the early evening light. Our room at Holiday Inn Express is GORGEOUS.

Thoughout the day I remembered the reason for our trip, feeling pangs of loss, pangs of guilty relief. Alzheimer's just obliterates the one you love, and abrades your heart to the very soul. At times over the past years of Mom's decline, I would find myself wishing that Dad was there to keep her from the dangerous forgetful actions, but he had such a tender heart, and loved her so much -- I'm glad he didn't have to go through this. I hope they meet again on the other side. I hope that she will be able to see just how beautiful she was to him, and how much he loved her.

And though the world is much poorer without my mother, her death was the mandate for me to use that dread apparatus of modern life: the telephone. I spent literally hours on the phone this past weekend, letting close friends know about Mom's passing, and catching up, and loving hearing Deb's and Lonz' and Barb's voices, getting a kick out of reminiscing with Dan Brown about what Mifflintown was like when we grew up in it. (He's the funeral director, and was the younger brother of one of my grade school/high school class mates.) I found myself wondering why I don't talk with them more often, and remember my mother nagging me to stop being so shy and solitary and get out there and talk to people!

And travel. Don't become a stay-at-home.

Got it, Ma.

End of the Line

Peacefully in her sleep, my mother died this morning. 

My dreams were strange last night, and I had a hard time sleeping around 4 am. Mom died right around that time.

Today I'm packing, doing laundry to pack; we'll clean up the car and get a new case of water for the trip. Howie won't be coming with us this time (he's getting too old, and the last trip took too much out of him) so we'll have plenty of room for extra clothes. I have no idea how long we'll have to be there.

I'm not happy my mother is gone, but I am happy that she's done with that damned disease.

Sad Dream, Sad News

A few weeks ago, I had a nightmare.

In it, I was in a house with my mother and my father. I wanted to get something from the upstairs, but I was so tired that I could only crawl up the white painted steps. (Note: I have never lived in a place with white painted steps.) As I neared the top, Molly the Macaw came waddling around the corner, and as she usually does in real life, began coming toward me. 

As I do in real life, I tried to get away from her, but slid down the stairs. She landed on me, and I kept trying to keep my face covered while she flapped and squawked. I shouted for my mother to help me, over and over, but she just kept on doing whatever she was doing in the kitchen.

Finally, I was able to get an arm under the bird and fling her away from me. I scrambled to my feet, staggered over to my mother and shouted at her. "Why didn't you help me? Why didn't you help me?"

She turned to me, looked down her nose, and said, "Because I don't like you." I raised my hand to crack her across the face, but all she said was, "You can't hit me."

Indeed, she was right. In the dream I knew I could never hit her, and just turned away, sick at heart because my mother hadn't really loved me at all. I'd been loving someone who didn't love me back. And my father, in the background, just shrugged, as if to say he didn't care about it at all.

Honestly, in the dream, it felt like my heart was being torn into pieces. Even after I woke up from the dream, I hurt inside, and shed a couple tears.

Now, a person could be miserable for days after a dream like that, even to the point of being afraid to fall asleep in case they dreamt something like that again. But I do know something about dreams, and I believe that you have to tackle them head on sometimes, to find out what's actually lurking in your subconscious.

The parrot as fear is a no-brainer: I'm scared as hell of that bird in real life, and every time she screeches it feels like someone put a chainsaw to my spine. Perfect symbol of a fear from which I need to be saved, right? But what is it that I'm afraid of, that my own mother won't help me overcome, and just turns away from me instead, disdaining me? And how could I be that angry at her, that I would (as I never did in life) raise my hand against her?

Any guesses? Oh, right. Alzheimer's.

And with that realization, I understood that at some level in my subconscious, she should still be the Mom I knew growing up: fierce, fearless, vibrant. She should have been able to surmount Alzheimer's! But instead, she has drifted away on the tide of forgetfulness, not even looking back. On that deep and cloudy level of my mind, I have anger at her for leaving me behind, no longer remembering me. And Dad, oh, Dad, where have you been while her disease has been crippling her, and breaking my heart?

I was able to find peace in understanding the dream, and I know she loved me. She didn't always know the best way to love me, but I never doubted that she did.

This afternoon the nursing home called me. Mom's foot is ...'better' ... but she is not. Some new phase of the disease has kicked in, and she forgot how to feed herself, forgot how to swallow after a bite of food. Uncomprehending, she just spit out her food and couldn't figure out what she was supposed to be doing with it. For the last three or four days, she hasn't wanted or tried to eat or drink anything, too weak to stand.

The nurse said they would put her on an IV to see if rehydration would "perk her up" -- but warned me that if there wasn't a big change in the next couple days, they'd be calling me again to discuss ... "making her comfortable." That means, in real life, allowing her to die.

I know that. I knew from the beginning that Alzheimer's is terminal. But my heart still thinks ... well, you know.

Gathering Clouds

The other morning, we woke to an unusual August sight: clouds!

Well, that many clouds, anyway, and that kind of clouds -- the ones that run in herds across the sky.

To me it seemed like a whisper, a reminder, a warning that the perfect weather we've been having is going to change greatly in the not too distant future.

In two weeks, we probably won't want to get in the swimming pool; it will be too chilly. Seems ludicrous today, when the temperature outside is 103 degrees outside, but the fact is, by the weekend, the low temps at night will make that pool feel like an ice bath.

So the clouds are an omen of cooler weather to come.

I got a phone call a few days ago that was a omen of changes, of clouds on the horizon of my life: my mother's nurse called from the nursing home to tell me that over night, Mom had inexplicably "bruised" an ankle badly. They took an x-ray, which showed no break, but then a couple days later, the nurse called again.

My mother's foot was still swollen, but turning red, with streaks going up her leg. I didn't need the nurse to explain to me why they had begun treating her for a possible infection; they were supposed to do some kind of tests to see if there was a blood clot involved.

No blood clot; so they tested for gout. No gout, no breaks, no clots.

I know this because they woke me up at 6:50 this morning to tell me that although the tests were clear of what they were testing for, her foot is still swollen, and because she can't remember from one minute to the next what her condition is, she tried to get up from her wheelchair to take herself to the bathroom, and fell. The nursing home always calls if there is a fall.

Mom wasn't hurt in the fall -- at least not this time.

I asked the nurse if there was a possibility of an insect bite that would cause my mother's foot to swell ... like me, my mother used to be very susceptible to "fly bites" -- gnats, in her case -- that would make her swell up with allergic reaction. (I got one off some bug on the surface of the pool about two weeks ago that made my left side swell and discolor like a bruise and systemic poisoning. That'll teach me to skinny dip at night and then not shower after!)

But the fact is, Mom isn't going to get all better, and the breakdown of bodily functions will continue to escalate. I'm not looking forward to how things will get more iffy, but I suspect that the breakdown events, knowing as I do that they must come, will be less traumatic than the onset of full-blown Alzheimer's was.

Day Eight: The River Will Keep Moving Along

The first business on Monday was to drive to Mifflintown to take sign some papers associated with my mother's trust fund. I was looking forward to this part of the day -- the people at the bank are really incredibly good at what they do, and I've emailed them, talked on the phone with them -- but never met them.

Before he let me do that, however, Bernie took a side trip off the road to a new Juniata River access point, built since the last time I was back East.

It was beautiful! If I lived back East, I'd be just about living at that access area. There's a nice boat launch, the parking lot is big, there are loads of areas that a rabid river fisherwoman could stand and fish and fish and fish. For one brief second, I wished we'd move back there.

A very brief second, to be sure.

The bank business went quickly, and then I gathered my fears and we drove to The Hearthside nursing home to see my mother.

The morning in-charge nurse had recommended to me a couple weeks ago that we take some soft ice cream for Mom -- something she would like, and we approached a common room, caramel sundae in hand.

Now, the last time I saw my mother, she was skeletally thin (and that is NOT AT ALL an exaggeration), a jittering, viciously angry talking skull, eyes bulging in emaciated sockets. I looked for her among the residents in the room, and didn't at first recognize her.

She weighs about 40 pounds more now, her gray hair has gone straight, and she was dozing quietly in her chair. When we called to her, "Tere! Hi! We brought you some ice cream," she responded, "For free?"

She took Bernie's arm when he offered it to her (declining me taking her hand) and we moved to a peaceful little lounge that has big windows. We asked her how she felt, and told her we were glad to see her looking so well. She told us that she had been born in Mexico, and that she had four brothers, and that the day they all became citizens of the United States was the best day they ever had. She really loved the ice cream.

Tere was bright enough in demeanor for me to be assured she wasn't drugged; her clothes and hair, hands and face were clean. The sagging wrinkles that had hung from her emaciated face three years ago were gone. She's being well-cared for. In her dementia, she's creating her memories as she goes along; she remembers very little of her life. I thought it was strange and sweet when she told us how very much she had admired her mother, and how, as a child, she wanted to be just like her. That's news to me, I thought as I watched her. She must have fibbed to me for nearly half a century. Again, it was sweet to think she's remembering nice things rather than bad and bitter things.

She didn't know who we were, and didn't ask.

After about 45 minutes of visiting, we took our leave of her. I hugged her, and told her I loved her. Goodbye.

I made it about 15 feet down the hall before my tears spilled over; the nurse put her arms around me and held me between her and Bernie. And then it was time to return to the world.

The visit was far less stressful than I thought it would be; it hurt so much more than I expected that she didn't know me. Still, what I needed to do, both for her (to see her cared for properly) and for me (to say farewell) was accomplished.

There was more, though. The past four years of my mother's decline have been hard. The outpouring of bitterness and meanness that presaged the loss of her memory and judgment, her refusal to admit to her illness, her pig-headed imposition of isolation on my sister, her uncooperative belligerence to her caregivers while she had 24/7 care in her home -- although I knew what Alzheimer's does to the people who have it, I carried, in some hidden talisman in my soul, a wad of anger for what her illness did to the people around her. In meeting her on Monday, seeing how very little of her life is left, I was able to put the anger down and leave it behind. Let it drift on down the river, so to speak. I have no need of it now; I can see that I only kept it to hide my fear and sadness.

I've looked at my mother's illness as a kind of purgation for her; a purification of soul on the spiritual journey. All the things that she clutched uncompromisingly to herself have been taken away. All the things that she grasped with unholy selfishness, now all gone. Her property, her possessions, her vindictiveness, her independence, her very memories ... with nothing left, she's calm and pleasant; as she told Bernie and me, "I'm very content." Her purgation and mine are connected at this time. In her inability to refuse my love now, and my leaving behind my anger -- together, we achieved a kind of reconciliation.

Shadows Wait for Mothers' Day

I made oatmeal cookies this morning.

That doesn't sound so very hard, does it? I've been meaning to make some for quite a while, and just didn't get around to it. However, this week, with Mothers' Day looming on every side, the marketing thereof shouting in one's ears, leaping feverishly before one, hampering one's steps, breathing hot and greedy and manipulative breaths on one's neck, I determined that I had to make the cookies, or continue to suffer nightmares and panic attacks in the darkness before sunrise.

I succeeded. I made the cookies, counted out a baker's dozen of the best, put them into a sturdy zipper freezer bag, nestled them between drifts of tissue paper, and sent them to my mother with a Mother's Day card.

Not a big deal, you'd think. Not a major effort like stacking wood or cleaning the house for Christmas or anything. Get up, find recipe, make cookies, put them in box, take to Post Office. Easy.

Sure it was. That was why, when I left the Post Office, my face was leaking tears while the rest of me shook. That's why I've had nightmares every night so far this week, about loss and fear and being attacked.

Yesterday morning I stood in the shower, pondering the mystery of how an old woman with Alzheimers, locked up in a nursing home, not knowing the day or the hour, and incapable of caring for herself ... could still terrify me into nightmares and rob my spring days of the peace that I should be feeling.

How does that happen? The mystery is unresolved. In all honesty, I don't want to visit her, I don't want to have any contact with her; before she required 24-hour care, she became so horrible, so mercilessly, cruelly, insensitively horrible that I didn't want to have anything to do with her. I knew her mind was failing, but the little girl she taught to cook and sew and garden didn't understand, and still doesn't, not really.

The adult that I try to be understands the progression of the disease, that it is terminal, and can never be fixed for her. The free woman that I am recognizes how frustrating it must be to her, to be penned up in someone else's house, with no way out; she can't even count the days because it is always today, always bedtime, always mealtime, always nurses touching her, always endless, like a bug caught and held poised in amber, beyond hopefulness of an ending or satisfaction of a rich life completed.

She has no visitors; but even if she had, she wouldn't remember them. She didn't remember me when I came to her door a few years ago and she never could learn any of her caregivers' names even though they were with her 24 hours a day. She still has memories, but they don't connect with anything she perceives.

Her nurses call me to let me know when things change with her; times when she refuses to get out of bed in the morning, argues about taking a shower, needs supplemental foods because she's losing weight or is dehydrated because she doesn't want to eat or drink at that time, even though she complains of hunger or thirst minutes later. She doesn't ask for me, or about me.

This week I want to get some large mailing labels and make them into addresses to her so that I can just print out a photo with a quick note and send it off every few days. Maybe something of that will please her, and will bypass the mechanism that makes my hands shake so badly that I can't print the words on the envelope.

Have some cookies, Mom. You taught me how to make them. I'll pretend that you liked them, even just a little.

And Oh, Yeah, the Drama

With unexpected speed, one of the nursing homes emailed me and told me they would be glad to admit my mother.

I admit that I cried when I got copies from my mother's trust officer of the cover letters she'd sent with the apps to the nursing homes. The Hearthside, a nursing home in State College, Pennsylvania, replied to me within hours of getting the application. I have no idea of the time frame involved, but everything is rolling along.

When my sister was dying, she was sent to The Hearthside, and via e-mail, I got to meet their social director, Karol. She was so kind and understanding! I met her in person after my sister died, and she was such a loving, vibrant person that I wish I lived near her. (Or better, if she lived near me.) We've kept in touch; when I knew I had to make a decision about Mom, she was the second person I consulted (first was Bernie, of course.)

With the acceptance of Mom's application confirmed, I sent off emails to the bank trust officer, my mother's pastor, and a letter to her physician with my Power of Attorney document enclosed. The pastor emailed me within minutes, reassuring me that I was making the right decision, and that he was vastly relieved to hear the news. The trust officer also concurred, and was pleased with The Hearthside's response time.

I cried some more.

What is left of my mother's body is a skeleton covered by veins and skin; there is no light of "Tere" in her eyes at all. Her spirit is blocked from its normal perception by the plaques in her brain, and all that works well is her fury, which spurs her gaunt frame to anger and a fight-response.

She never really understood me, but I miss the times we connected with humor or determination, and I felt that she was one of the most amazing people I had ever met.

All is done now, until the paperwork is finished. And then what?

I don't even really want to think about it.

Wish It Were Different

About a year and a half ago, or maybe it was a hundred years -- it seems like that some days -- I left the house to walk in the early morning, trying desperately to shed the pain I felt after talking to my mother on the phone.

She hadn't yet been diagnosed as having Alzheimer's disease, but I knew that something bad was happening to her. A few months before, I'd made a commitment to call her on the phone every day to keep tabs on her. With each passing day she vomited into my ear such bitterness and hateful memories that I would come away from each encounter shaking, feeling battered to the heart. I heard things about her life that I should never have been told; I would rather have gone to my grave without knowing the secret feelings she harbored.

Anyway, on that morning, a hundred years ago, I walked and walked, and cried, and prayed, because there was just nothing else I could do. After a while I turned to head home, and there in the sky was a rainbow, which the Bible tells us is God's promise to never again destroy the world in a flood. I really felt that the rainbow, for me, was a promise from God that eventually, everything would turn out all right.

I remember that rainbow every day, just about.

I remembered it last night when I got a call from the Pennsylvania State Police, asking me to please call my mother and "reassure" her. She'd called 9-1-1 to complain that she couldn't get her caregiver to leave the house. I explained to the trooper that she has Alzheimer's and doesn't understand that she must have 24-hour care. He was understanding, but I could imagine him rolling his eyes at the ceiling in exasperation.

So I called Mom's house, and she answered the phone, even though it was after 11pm her time, and she should have been in bed. I tried to "reassure" her, and she reacted just as I knew she would, with invective and curses, threats to cut me out of her will, loud and angry demands to be given a competency exam, and just plain old mean ass shit-talk. Nothing I could say made any difference in her anger. Finally I just gave up, and as she shouted, just said over and over again, "I love you, Mom," hoping that somewhere in that ravaged mind the woman I admired so when I was growing up would hear my words.

She hung up on me in her fury, and after a few minutes I called back and asked to speak to her caregiver, which she let me do, to my surprise. I had a long chat with the caregiver, a pleasant chat; the woman is surely earning a place in heaven putting up with this aggressive, nasty stage of Alzheimer's.

I'm trying to keep the rainbow foremost in my mind.

Being Dutiful

I called my mother on Christmas Day.

She did recognize my voice, or at least she seemed to. During our twenty-minute conversation, at times she thanked me for the flowers I'd sent to her, at times she thanked me for the pointsettia she thought I'd sent to her.

Mostly she bitched about the people who "visit" her and how they only come to her house because there are no other elderly people to visit. She has no understanding that the in-home aides are there to take care of her. She is still (as she was from the earliest memories I have) utterly without ability to accept gift, or compliment, or help with gratitude. I refrained from telling her that the people were there because I ordered them to be there -- she wouldn't be able to understand that, so there's no point.

I listened to her repetitive rant until my temples were throbbing, then extricated myself from the conversation.

Talking to her was like looking at a cicada moult and trying to figure out the bug's mind from it. She has convinced herself from her core of being that there is nothing wrong with her, and that she needs no one's help.

Nothing that she says is reliable. What she apprehends from minute to minute is malleable, it might be real, it might be imagined. She said she was alone, although the agency we've retained says it is there 24/7. I don't know if that's true or not.

I began to froth at the mouth that she had been left alone on Christmas Day, but then had to sigh, and wonder. Maybe she was, and maybe she wasn't. And though I might rage at what might happen to her if she was alone, isn't some incident that she, in her incapacity, might bring upon herself the foot in the door that I've been praying for to get her into a nursing home?

Wishing her no ill, I still have to accept that her Alzheimer's is a death sentence that cannot be commuted.

May God have mercy on her.

Out of Control

That's what you call a jungle, isn't it?

Except that a few short years ago, it was mowed clean, with rows of nursery stock that never sold after my parents retired from the nursery business, the stock allowed to grow tall but always tidy. There wasn't a lot left, especially after townsfolk came to hear that Quay's Nursery was letting people come dig up what they wanted, for free. (In point of fact, I got a number of arborvitae for my house at that time. And a couple dogwood trees.)

But even though they went out of the diggin' business, my parents kept "The Meadow" mowed and neat and inviting, a lovely place for a walk down the hill to the creek. From where I took this picture, you could see all the long way to the end of the property easily. In 1999, I tested a pair of Mountain Horse snow boots by walking down to the meadow and standing on the snow in the shade of a holly tree to see if my feet would get cold. It was all open and lovely then. (No, my feet didn't get cold, not at all -- too bad I didn't have boots like that when I was a kid.)

The last time I was there, Mom and I walked all the way around the meadow and I listened to her talk about all the things she was doing to keep it neat. She had someone mowing with the big tractor for her, but she was still planting hand-raised Japanese maples for donations at her church's "yard sales." I can't remember what year that was, but she just about drove me nuts with her non-stop verbal battering (she would have called it "filling in the gaps in the conversation" because she always thought I was too quiet) and I didn't go back to visit in the flesh until a couple weeks ago.

Now sumac and locust trees have grown up there, and mimosas and silver maples, and poison ivy and nettles and raspberry brambles. Trash plants.

In a strange parallel, the meadow has become as clogged with weed trees and vines as her brain has become stifled and clogged with the Alzheimer's disease.

Today, though I am truly glad to be home, I woke startled to find myself in my own bed. And was immediately depressed. Is it because I know I'm going to have to go back there to find a place for her to live out the rest of her days? Or is it just a reaction to the lack of adrenaline in my system -- I'm not "full on" like I have been for the past month?

I sorted through the various papers and receipts I brought back, put them in folders and filed them away for future reference, and teetered on the brink of tears.

What can I say to my mother, who glimpses reality through a kaleidoscope of shifting images now? The disease has taken over and scrambled her time. It crumbles her knowledge of what is happening minute to minute while it surrounds her brain with cement, burying her, deeper and deeper. All the things that I saw on our road trip, the dust storms, the wild animals ... I find myself wanting to tell my mother about them, like I always did. But she's not there. The only thing present is the disease, which has assumed her form and mocked it with making her forget to eat enough, and which short circuits her words to loop around and around, moving her lips but blocking her ears so she doesn't understand what she hears.

When I was nine, she and Dad cleared the overgrown property they bought and called "The Meadow." They cut down the locust trees, eradicated the poison ivy and the honeysuckle tangles, and built terraced beds down the hill for azaleas, yews, rhododendron, and birch. It was a triumph for them, carving out order from the mess.

This time she has no way out of the jungle.

Fait Accompli

June 28, 2007

Today was a day that could just about define the word "stressful."

Today was the day that Adult Protective Services was to get the court order in hand to remove my sister from my mother's care. They wanted me to be there when they took Jan away. (Hence me being in Pennsylvania. Though I've been here a day and a half, I didn't call my mother and let her know -- I was afraid she'd find some way to bully Jan into her car and take off with her. )

We had breakfast at a local restaurant, then decided to go let Bernie's mother know we were in town. We knocked on her door, got no answer. Bernie had to call her on the phone to tell her to come answer her door. When she did, she was quite surprised to find us there.

We filled her in on the situation, and she was glad to hear that Jan was going to a care facility -- she'd thought Jan should be removed some time ago when my mother told her that she tied Jan into her chair so she wouldn't roam through the house while Ma worked outside. God, I hadn't known about that. And then Mother-in-Law offered to go with us when we went to witness Jan's removal. It was perfect. While my mother still believes on a deep level that I am a child who must be dominated, she sees Bernie's mother as a friend.

While we were talking, Mom's lawyer finally returned my call. He gave us the scary news that if Mom told any agency to ignore my power of attorney, it would negate my ability to use it. He advised me to get her bills paid secretly, and set up a payment schedule for them before she could get to the bank and yank my POA.

Off we went to the bank,(in my mother's town) where the teller we spoke with turned out to be a high school classmate of mine -- one who had thought I was crazy but didn't actively dislike me. She set up an impromptu meeting for us with a trust officer to see if a trust for Mom would meet our concerns.

After yet another rendition of my woes, we set up a real appointment for next week. Then I went back to my teller friend and asked her for some checks so that I can pay for some stuff of Mom's out of her account. Before that was done, the case worker from Adult Protective Services called me and let me know she had the court order, but was waiting for one more signature before they went to get Jan.

Back to the teller again, my hands shaking. We got the checks and then, armed with my POA papers, I went to the other two banks where Mom has money squirreled away, and got account numbers and balances -- information the trust dude will need.

Then it was back up the road to the town where we're staying, to wait for more news. Bernie took me to a restaurant for a glass of wine. Just as we placed our order, the APS caseworker called and gave us a time for the intervention. We had time to finish our wine, and then went to get Bernie's mother.

We arrived at my mother's house while the caseworkers were still trying to get my sister to get out of her chair. When we came to the door, Mom didn't know who I was, or Bernie. She did, however, recognize Bernie's mother, who hasn't really changed her looks much in the past 30 years. Bernie's mother, Regina, managed to convince my mother that the specter in her doorway was me. It took about 10 full minutes before my mother believed her. Or at least until she said she did. I'm not sure she really accepted the introduction.

The caseworkers brought in four people to get Jan out. The house was hellishly hot, all closed up. Jan was freaked and refused to get out of the chair that has been her mode of existence for years and years. You have to understand that the chair (a recliner that has seen better days) has been Jan's environment except for bathroom trips, and bedtime, and meals in the kitchen. That's all. Sounds like abuse? Damn right, it is. Blame my mother's decreasing mental state. The dementia that is claiming my mother's brain doesn't want Jan moving around.

Jan refused to budge, and they called a bigass burly police officer to help. After another 20 minutes of Jan's standoff, the policeman picked her up bodily and took her out. She cried, which was pitiful and hurt my heart, but even then I noticed that she didn't cry out for her mother. She just said, "Put me down!"

I followed them to the group home where Jan will actually have 24 hour care, and no one will tie her into a chair or tell her to shut up or call her names -- dear God, how I wanted something like this for her 20 years ago. She was upset, of course. She's blind, and this is the first new environment she's been in since she broke her ankle about 5 years ago. Or was it 6? And that was just for a couple weeks.

Suddenly, from sitting in a damned reclining chair in a stiflingly hot house with a semi-deranged caregiver, Jan was transported to a bright, light house with air conditioning and people dedicated to taking care of her. She looked very young, in spite of her graying hair, like she was nine years old. "I'm scared," she said, and the caregivers surrounded her and assured her that everything would be fine. Before I left her, I took her hand and rubbed her legs and told her we'd be there soon to visit. She stopped crying at that point. I think I'll be back East to visit more often now that she's not trapped in my mother's house, sad as that is to say. Seeing her isolation (okay, let's be up front and call it abuse) was too much for me to bear. I've been trying to get her out of my mother's care since the broken ankle incident.

Once I left Jan in good hands, I went back to Mom's house. She asked the same questions over and over again: "Why did they do this? Will Jan have to stay over night? When are they going to bring her back? They're not going to ruin her, are they? I just got her settled down!"

Deep in the throes of dementia, be it Alzheimers or whatever, my mother can't really understand processes not of her own routine, and the dementia has her paranoid and quite delusional as to her own capabilities and condition. She is so incredibly emaciated that I can hardly believe she still gets around. Her arms look like broomsticks with skin and veins as upholstery.

When it was time for us to get Bernie's mother back home, I asked Mom if she was going to be okay. She said that she would be, and no, she didn't want any food for her evening meal because she wasn't hungry.

Suddenly I wasn't, either.

Background Noise

The first step is the premise: Two adults will drive 2667-odd miles in a Pontiac Vibe with a big dog.

The second: Admitting the trip has to be made.

Step Three: Turn on brain.

That's where I am right now, just letting the puzzle run in the background of my thoughts. I'm not pushing it to a conscious problem-solving mode -- that's for figuring out how many pairs of underwear to pack. This process is more spatially-oriented ... I have a visual of the cargo area of the Vibe and a clear idea how much room a dog is going to need to be comfortable. Now, how does it all fit?

Part of the puzzle snapped together yesterday while I was out shopping for a kickboard for Lillian to use in the pool. An ugly orange bag caught my eye and the background process highlighted it. Ugly though it is, it has enough room for a week's worth of simple clothes, a laptop, and what toiletries I need -- and it is an absolutely perfect match for the space behind the front seats of the car and in front of the cargo area. It fits like it was made for it, and will still leave plenty of room under the front seats for a full case of water in easily handled bottles. Water, clothes, computer, check.

I also believe that a bag of dog food will fit in that area, between two of those bags. This is important because Howie eats only Canidae dog food. Because it's a quality food, he needs only a cup (8 oz) of food in the morning, and another cup at night to keep him in prime condition. The greater digestibility also means he poops less, therefore, fewer doggie doo-doo stops along the way. I don't see any way around taking a bag of the food, because there is no guarantee that we'll find any sold in very rural Pennsylvania.

We have to carry some sort of ice chest, I think, but we have some tiny ones that ought to serve. The decision has not yet been made about whether or not we are doing this going from cheap motel to cheap motel or campground to campground, so the tent is not definite. If we tent, we need not only the tent, but the mattress, some pillows (forget blankets, it's going to be in the summer) and a little pump.

(Electricity is no problem, I have a 115v outlet on the dashboard of the Vibe.)

A flashlight.

Jack In The Box is going to cater this trip, so I'm not worried about food. Hell, maybe I'll lose some weight.

Makers of the Vibe thoughtfully provided lots of storage compartments in the front seat area, enough for cell phone chargers, camera, pencils, and CD's.

Bernie has asked for a week's notice in advance. I think I'll probably know by the end of this week about when we have to go. Probably, but not positively.

Mom had an MRI this morning, and an EEG. As I understand it, the MRI will show if her dementia is Alzheimer's or not.

I was looking at the stages of the disease, and was saddened to see how far along Mom appears to be. The other day when I called her, she said that she thought I had called earlier in the day. "At least I thought it was you on the phone," she told me. "But it must have been someone else. Or maybe it was yesterday."

I keep wondering how long it will take before she doesn't remember who I am anymore.

Digging, and Howie Has Patience

Friday, and still no word from Back East about my mother and my sister.

"Should I call people back there and ask them what the hell is going on?" I asked my husband. He was kind, and reminded me that everyone who has anything to do with the situation already has my phone number, and knows to call me if anything has happened.

And that is true. I just want CNN-type hourly updates from all of them, so that I can tell them if they're doing it right or not.

Mom herself is not answering the phone in the evenings. I always called her at the same time, so she knows if the phone is ringing, it's me. No answer. Or maybe she just turned off the ringer one more time and blissfully forgot that there was such a thing as a phone.

She did tell a mutual friend (last Sunday) that she was not going to answer her phone any more because she was sick of caseworkers coming around disrupting her routine.

Wow, I think that must have been the inspiration for the cartoon feature, "The Emperor's New Groove."

In the meantime, to try to stop worrying, I went out to the back yard and finally, after what, two years? -- got around to planting our little cherry tree that John and Alex gifted us for our 30th wedding anniversary.
Digging was good, though I got a close up view of the massive weeds on the back bank, and filled up half a 55 gallon recycle can with only about four feet of the bank.

And I finally got Howie and Sebastian to pose together. Seb, in the foreground, looks bigger than Howie -- and almost is.

His head is bigger, but How still has more bulk per inch. But not for long, I think.

Sebastian has that intense, direct stare that wants to know what is happening ... and Howie is just asking, "How much longer do I have to lie here beside this pile of crap?"

Inexorable Things, and Poppies

The late afternoon sun was perfect for illuminating these poppies and giving them a glowing color that needed no touch-ups in Photoshop.

In a month, it will be ten years since we moved into this house. I can't forget the first morning we woke here, to a quiet neighborhood and the sweet sound of birdsong. At that time there were maybe two or three spindly poppy plants on the back bank, which, along with the lawn, were dying for lack of water. We collected their seeds and sprinkled them on the dry ground, and were rewarded the following spring by a humble crowd of wildflowers.

Every winter since then, we've looked for the first poppy sprouts on the bank, a promise of spring to come soon.

I tried and failed to get hold of my mother's doctor today; but the caseworker from the Area Agency on Aging called me and we compared notes. Apparently my mother has been turning off the ringer on her phone. Now, does she know she's doing this? Is she doing it so that the phone doesn't ring while she's eating lunch, and then forget that she has? Is it her way of avoiding the caseworkers who try to call to schedule appointments? Connie the caseworker said she's turned the ringer on Mom's phone to the "On" setting twice now, after calling and calling and getting no answer.

Yesterday my mother-in-law tried to call, and getting no answer for the second day in a row, drove to Mom's house to see her. They had a nice visit, but Mother-in-law was appalled to see how thin and desiccated my mother looked. Forgetting to eat, perhaps?

Connie told me that last Monday, when she arrived to take my mother to her doctor's appointment, that (of course) my mother had forgotten about the appointment and tried to get out of it by saying she wasn't ready. Connie told her to go ahead and get ready, they had plenty of time, and while Ma was out of the room, Connie spoke to my sister, just chitchat. Amazingly, Jan answered her, and spoke to her ... until Mom scuttled back into the room and told Jan to stop showing off. Jan clammed up and spoke not another word. Still, I was elated to hear that Jan is still responsive -- she's been so quiet for so long that I worried that she had lost the ability to interact.

The consensus seems to be that Jan should be removed from my mother's home as soon as possible for not only her well-being, but her safety. If Mom can't remember to feed herself, is she actually remembering to take care of Jan? I know that it is going to cause upheaval in their lives, but I think that even in the short term, getting Jan out of that house could only be the best for her.

The other thing is the issue of my mother driving. She's already admitted to getting herself "lost" on her way to church once, and a friend called me to tell me he saved her ass when she hit a cloud of confusion at the local gas station and suddenly could not remember how to put gas in her little truck or how to pay for it; I've been instructed to tell her physician about the incidents, and in light of his evaluation of her condition, he will probably send paperwork to the Pennsylvania DMV to require her to go in for a driving test -- which I cannot imagine she would be able to pass.

She has good days sometimes, when her laugh sounds relaxed and easy, and she understands the things I tell her. I like to let those conversations hearken me back to the days 20 plus years ago when I lived in Pennsylvania, too, and we would meet in the earliest hours of the day to fish in the river while our respective households slept in. She was there to see me cast from 15 feet away into a tiny creek that emptied into the river -- and come up with a 17-inch trout, much to our surprise. Or the time we were surf-fishing on Hatteras Island, and I caught a little shark -- and Mom had to come to the rescue and take the hook from its mouth. The beast was still twitching and switching when we took it back to the cleaning station, and in shame for my earlier cowardice, I grasped it by the tail and whammed it hard on the wooden gutting table. I don't know that I ever remember my mother laughing that hard at anything else I ever did. (And she did appreciate the way I cooked the shark that day.)

There was a time when she was a good, good friend. Maybe in the next life we'll be able to recapture that friendship.