"Jak sie lozko poscieli, tak na nim wyspacz," was what the old women in my family said when we youngsters complained. "The way you make your bed, that's how you have to sleep in it."
I was thinking of this phrase as I drove from Massachusetts, via Albany, to my mother's/brother's. I was in Albany for an overnight so that I could get together with my long-time women friends for our annual holiday dinner.
When I got online today and read Ronni Bennett's two most recent posts (Are You Satisfied With Your Life and The Real Economic Story), the admonitions of my female elders came to mind again. (Ronni always seems to be two steps ahead of me.)
While in Albany, I stayed with one of my friends whose home looks like the pages of a decorating magazine. I stayed in a guestroom bed, which was, well, lets just say, well made. It was a pleasure to lie on it and to wake up in it.
This friend, now retired, is not wealthy, but she is certainly is better off than I. She can afford a twice a month cleaning lady and someone to take care of her lawn and shrubs in the summer. If her driveway needs paving, she pays to have it done. She spends time where it's warm when it's cold here in the Northeast, and she pays an enormous amount for long-term care insurance. I think she diversified where she put her capital enough so that she wasn't terribly affected by the Wall Street fiasco. She's a few years younger than I, more than a few pounds lighter, and she's always been more attractive. While there are times that I envy her lifestyle, ultimately and finally, I have to sleep in the bed that I made.
Am I satisfied with my life, as Ronni asks? I made my choices and took my chances, and things could be a lot worse. My only DISsatisfaction is that I'm not totally moved yet. Will I be satisfied then? I don't know, but the last three years living in my brother's house while I take care of my mother have been pretty miserable. So I guess it's all relative.
Reading the Huffington Post links that Ronnie provided (here,here, and here) certainly makes me grateful for what I do have.
My bed might not be of designer quality, but at least I have one.
The ice storm hit us Thursday night, knocking out electrical power for a while. I didn't realize how bad the storm had been further north until I set out for Massachusetts this morning with the car radio reporting on the tens of thousands of New Yorkers still without power.
I drove across the swaths that the ice storms devastated, paralyzing the trees along the way with thick crystalline bonds. I wished that I hadn't packed my camera (somewhere in the back of my car that was loaded to the roof with boxes and bags of my life's accumulations, including my desktop, printer, and monitor and more cables than I could possibly have use for).
The landscapes I passed looked like stage sets for the Snow Queen or a scene from some alien planet. When I finally stopped at a rest stop, it was closed (no power). The other rest-stoppers were as unwilling as I to use the outdoor port-a-potties in the 15 degree weather. But many of them went back to their cars for their cameras to capture the bushes outside McDonald's, their thickly iced branches arched over like so many alien tentacles. The sun was out and the ice looked lit from within. I had no idea under which layer my camera was buried, so I passed up the chance for some amazing photos.
The news on the radio reported that some people will be without power until Monday. Several towns had curfews to keep people from driving over icy roads at night
It's a little chilly here at my daughter's, even though the heat is on. We have to figure out how to get more heat into my part of the house. I love it cold when I'm sleeping, but at the moment, I've got cold feet blogging.
I am worried about my (92 year old) mom -- not because of the cold (and my brother has a generator in case of power failure). I'm worried because the dementia is getting a lot worse, and she cries and wails almost all of the time. My brother doesn't want to sedate her, which seems to be the only thing to do at this point, as far as I and the doctor are concerned. I can't tell how much pain she's in, but when she moans, "oh..oh...oh....oh.." and seems to be in great distress, I can't help wanting to give her something more than Tylenol to relieve whatever it is, to ease her brain as well as her body.
But my brother won't let me, believing that there is no drug that will make her feel better but not knock her out. There might well not be. But I'd rather knock her out, take the pain and anxiety and fear from her face, give her some peaceful sleep, a respite from the demons of decay.
I can't stand to have to stand by and watch her suffer. And that's one of the reasons that I'm here and not there.
Our doctor ordered a nurse to come in once a week and see how's she's doing. My brother is objecting, for reasons that are only relevant to him and his demons.
Well, it ain't over til it's over, and I might have to get her out of there. But if I do, I will have to put her in a nursing home, and I don't think that she would survive very long there.
A former colleague -- one known for his series of extra-marital affairs -- once told me that he could live with guilt.
It's the first snowfall here in Massachusetts. If I were at the address that I am leaving, I never would have gotten out to enjoy the day. My daughter's nuclear family went outside to play in the snow (and clear off my car). I just hung out, took some photos, and generally was delighted to be, finally, in the midst of laughter and play.
I will be driving back to my mom's/brother's tomorrow. It's supposed to be a nicer day -- for a drive, that is.
At least I didn't fall down and break my hip, like fellow elderblogger Darlene of Darlene's Hodgepodge. It might be cold here, but at least I'm comfortable, unlike Darlene who lives in warmer Arizona but is still in rehab. Mend soon, Darlene.
I feel as though I'm on vacation in my new space. I'm not totally moved in yet, and there will be a lot of organizing once I get everything here. But, for now, it's slow, relaxed days and evenings -- which is good in some ways and not so good in others.
It leaves me time to think. About my life and what kind of person I've been.
The truth is, in the past, I was neither a good daughter nor a caring sister. I was not a particularly good spouse or mother, either. I had my own ambitions and my own dreams, and I always managed to fit them in, even at the expense of others. I guess that watching my daughter with my grandson reminds me of all the things I never did for my kids as they were growing up.
Maybe these feelings are prompted, now, by my guilt over leaving my mother in my brother's care, of forcing my brother into the position of having to figure out how to give/get her the care she needs or face legal consequences. If assume her guardianship, I will have to put her in a nursing home, and that will break all of our hearts.
Cold comfort.
Until I hear my grandson giggle or wake up from a restful night's sleep. I can live with the cold.
In a way, it's a relief. I don't have to go through all the complex strategizing to get him to compromise -- only, each time, to come up against a stone wall. Actually, it's more like being dumped into a vat full of jello. Either way, I get nowhere.
I'm out of energy and stamina. I give up. He can take care of our mother any way he wants.
He has arranged with a female musician friend of his to come and stay with our mother. Every once in a while. No set schedule. I've met her. She's nice enough, and, as far as I can tell, my mother likes her.
I wanted him to hire someone from an agency who is trained to deal with dementia patients. That is, who knows what kind of patience is necessary to deal with someone who pretty much lives in her own personal reality, which sometimes overlaps with a more objective reality -- but even then, with her own emotional twist. But he wouldn't agree to that.
So, I give up, and I'm intellectually and emotionally distancing myself from the situation. I will come in once a month to visit my mom. I hope that we both can take the emotional stress. It's almost better if she completely forgets who I am.
I'm hoping to be completely out of here and out of primary caregiving by the end of the year. It seems like forever.
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.
Today was supposed to be my official move day, but I'm bogged down by stuff and responsibility.
So, instead, the move has become a slow one as I sort and pack and dispose of. At the moment, my car out in the driveway is packed with household stuff that I will take to the Salvation Army tomorrow. And then, next week, I will pack the car with another load that I will drive out to my new space at my daughter's.
Actually the slow move is working out OK because I just can't shake my responsibilities to my mother, especially since she has suddenly become very weak and wants to sleep a lot. And so I spend a week here taking care of her and then drive out with my packed car to spend several days setting up my space and playing with my grandson. The drive out is like a mini-vacation in and of itself -- I have several hours all to myself to think and surf between NPR and country western music stations. Sometimes, I even sing out loud, moving my shoulders to the steady beat while cruise control takes over.
Stuff and responsibility. I'm carrying a lot of baggage.
Well, I'm not really going fishing, but I am going to the ocean, along with my son, and daughter and her family. We will be carrying out my once-husband's last wishes and having what will probably be our last chance to all be together for a while.
This will be the longest time I've ever been away from my mother since I started caregiving in 2000. She will be in my brother's care for the next six days.
And when I get back, I will begin counting down to my own "move on" day.
He's waiting for me on the steps to my new door to a new life.
The space for me at my daughter's is ready except for the painting. I am conflicted about leaving here, but, after eight years of the increasing burden of caregiving, I just can't do this any longer.
When my mother was my age, she was going on cruises with my dad, surrounded by couples with whom they had been friends since their dating days. My dad passed away in his early seventies. I want to be able to have some sort of life before my number comes up.
I imagine being able to come and go as I please, being able to sleep through the night, sitting outside on my steps in the morning and having a cup of tea in the sunshine. Here, I am not only sleep deprived; I am deprived of all of those small things that become big things when you don't have them.
I imagine being able to get off my anti-depressants, walk my way off my cholesterol med, throw away my muscle relaxant.
It's come down to my life or hers. My brother, who has control of everything here, will have to figure out how to get her the care she needs so close to the end of her long life.
I don't know how long my life will be. I can't give away what's left. Not any more.
And waiting for me with anticipation is my grandson, whose loving energy will help me overcome the guilt I will bring with me.
Four days with my daughter and family put me in another reality, one suffused with conversation, laughter, play, sunshine, and time -- things I don't have here, where the insistent needs of a 92 year old woman hold just about every moment hostage.
I was able to sit in the dappled shade and finish the mystery novel I started to read last month. I was able to relax enough to ease the spasms I've been getting in my back from an out-of-place rib. I sat on the floor and with my grandson and his various construction, rescue, and police vehicles. I slept like the dead.
I never got to post a new piece on the education issue. That will have to wait until next week. As for now, I'm struggling with re-entry.
Well, I think the clearest statement of what I value is found in the preamble to the Constitution. There is nothing in the preamble to the Constitution which defines the purpose of the United States of America as remaking the world in our image, which I view as a fool's errand. There is nothing in the preamble of the Constitution that ever imagined that we would embark upon an effort, as President Bush has defined it, to transform the Greater Middle East. This region of the world that incorporates something in order of 1.4 billion people.
I believe that the framers of the Constitution were primarily concerned with focusing on the way we live here, the way we order our affairs. To try to ensure that as individuals, we can have an opportunity to pursue our, perhaps, differing definitions of freedom, but also so that, as a community, we could live together in some kind of harmony. And that future generations would also be able to share in those same opportunities.
The big problem, it seems to me, with the current crisis in American foreign policy, is that unless we do change our ways, the likelihood that our children, our grandchildren, the next generation is going to enjoy the opportunities that we've had, is very slight, because we're squandering our power. We are squandering our wealth. In many respects, to the extent that we persist in our imperial delusions, we're also going to squander our freedom because imperial policies, which end up enhancing the authority of the imperial president, also end up providing imperial presidents with an opportunity to compromise freedom even here at home. And we've seen that since 9/11.
Sometimes these days I think the only way I have stopped myself from strangling my brother and/or my mother is by picking up a crochet hook or a pair of knitting needles and going at it with a new hank of yarn.
I realized recently that I am a "process" craftsperson rather than a "product" one. I have at leave five projects started that I've set aside because I got to points in the patterns that required a lot of attention to detail. So I've started a lightweight crocheted afghan for when I move in with my daughter and family. It's the same stitch over and over again -- striped using two related yarns. There is something about the rhythm of the hand movements that's mesmerizing, mentally relaxing. I can sit in the middle of a raging familial storm and block it out with the repeating stitch mantra. It's certainly better for my health than drinking.
But that was all before I moved my mother and me in with my brother. That was before my mother needed 24/7 care. Then I had the mental energy to focus on the details of form.
Now I just need something to do with my hands, something to intrude between my world and my brain. Something that I can easily put down if I have to.
So, it's
Yarn over hook.
Insert hook in the next stitch to be worked.
Yarn over hook.
Pull yarn through stitch.
Yarn over hook.
Pull yarn through all 3 loops on hook ..........
Today I let the dishes go and did some blog-jumping through Goodblogs. And I eventually found this:
CAREGIVERS BILL OF RIGHTS
I have the right:
To take care of myself. This is not an act of selfishness. It will enable me to take better care of my loved one.
I have the right:
To seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
I have the right:
To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself.
I have the right:
To get angry, be depressed and express other difficult emotions occasionally.
I have the right:
To reject any attempt by my loved one (either conscious or unconscious) to manipulate me through guilt, anger or depression.
I have the right:
To receive consideration, affection, forgiveness and acceptance from my loved one for as long as I offer these qualities in return.
I have the right:
To take pride in what I am accomplishing and to applaud the courage it sometimes takes to meet the needs of my loved one.
I have the right:
To protect my individuality and my right to make a life for myself that will sustain me when my loved one no longer needs my full-time help.
I have the right:
To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.
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.
One of the distinguishing characteristics of the Halloween witch is that bump on her nose. Well, not only do I have one; I have three. I guess that makes me officially a witch.
The dermatologist says they are "fibromas," which are benign kinds of tumors. Mine are under the skin, and so they are not really noticeable. I can have them "sliced off" (the doctor's words), but insurances don't pay for that because that's considered a cosmetic procedure. He says it's not a big deal to take them off, or out, or whatever they do to remove them. (But he'll have to cut the skin, so how is that not a big deal??)
When I first got them (one ages ago, one six months ago, and one last month) I thought that they were sebaceous cysts, and so I put hot compresses on them and they eventually diminished in size, but they never went away.
At the moment, they don't bother me, but I know they're there. I can feel them.
I can't worry about them now, however. In two days I'm leaving to head out to Massachusetts for my grandson's sixth birthday, and I'm going to stay over at least three nights.
So it will be just my brother and mother. The hospice nurse suggested a change in my mother's medication, so we're going to try that. Her extreme anxiety is overwhelming her. And us too. I guess it's her dementia getting worse. Between that and her increasing aches and pains, it makes it almost impossible to interact meaningfully with her. It's like trying to take care of a sick toddler.
I often wish I really were a witch so I could get on my broom and fly away.
As I'm cleaning out old files, I found an old receipt from the vets with my cat's age on it. (I've been trying to remember when I rescued her from the tiny pet store cage in which she could only sit in her litter.) As far as I can figure, she's almost 12 years old. For a fat old cat, she sure is doing well.
Because I'm anticipating moving her with me when I finally get to my daughter's, I invested in a large carpeted "house" for her litter box. If I had known that it weighs 50 pounds (the inside is melamine), I might not have ordered it. On the other hand, maybe I would have, since it also works beautifully as another sunny window perch for her.
My mom, who is older than my cat in cat-years, is not doing so well. She seems to only be able to stay awake for a couple of hours at a time. She often doesn't eat unless one of us feeds her. The hospice nurse is stopping in today, but I doubt if there's anything she can tell us that we don't already know.
The only time I seem to get outside for any sun shine is when I go out to tend my kitty corner garden. For lack of any other place to put it that wasn't overgrown with weeds, I tucked it into the space between the driveway and the woods. It's not perfect, but what is.
Not even my grandson is perfect, although he's close. He can't be bothered to put on matching socks in the morning, but, as my daughter relates on her blog:
Our big brained boy wanted to know yesterday how the first person ever born was, well, born -- because if he/she were the first, how could they be if every person born was only born after the mother before them was born (this child is only turning 6 next weekend, btw).
So there I was, having to launch into a succinct, but thorough explanation of evolution from slimy muck to Man.
Actually, as much as the weeds around here need whacking, they're not getting it. They are pretty much out of control. Weeds: plants considered undesirable, unattractive, or troublesome, especially one growing where it is not wanted,
It's not just the weeds around here that are out of my control. I am still living under the tyranny of my mother's growing dementia and dependence combined with my brother's demoralizing rules and realities.
Not much freedom for me here, on this Independence Day.
Maybe I should go out and buy my own little weed whacker, vent my frustrations on that army of undesirables that are intruding over every path from the door to the world. Whack! Whack! Take that, you creepy things.
I did murder a whole bunch of Japanese Beetles today as they attempted an orgy on my tomato plant. Whack! Whack!
One can only hold in anger and frustration for so long. Yes, I think I need to go out and whack those weeds, clear a path, clear my head. I know that those weed whackers are pretty loud, loud enough to muffle the yelling I need to get out of my system.
Someday I will be able to celebrate a real personal Independence Day. Until then, I need to go out and get a weed whacker.
On Independence Day back in 2002 I blogged that there should be a "Interdependence Day," and a commenter sent me to this page, where there is a Global Declaration of Interdependence, as follows:.
Preamble:
In acknowledgment of the many existing documents and efforts that promote peace, sustainability, global interconnectedness, reverence for life and unity, We, The World hereby offers the following Declaration of Interdependence as our guiding set of principles for moving forward into this new millennium. It is inspired by the Earth Charter, the essential values of which have been culled from the many peoples of the Earth.
Declaration/Pledge
We, the people of planet Earth,
In recognition of the interconnectedness of all life
And the importance of the balance of nature,
Hereby acknowledge our interdependence
And affirm our dedication
To life-serving environmental stewardship,
The fulfillment of universal human needs worldwide,
Economic and social well-being,
And a culture of peace and nonviolence,
To insure a sustainable and harmonious world
For present and future generations.
And tonight, as I watched part of New York City's fireworks, I couldn't help wondering how all of that money spent on fireworks all over this country could have instead been used for much more important and humanitarian purposes.
But rulers know how to pacify the people using bread and circuses, how to make them forget what the late George Carlin so eloquently reminded us about.
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.
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.
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.
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.
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.
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.
Is that the way it was done before nursing homes and hospices, before miracle drugs and transplants, when old folks died slowly at home, their sons and daughters and grandchildren and cousins all taking turns taking care? The frail old ones, dying only from the final stresses of age and gravity, moved slowly and silently, sleeping through most of those last months, last weeks, last days. Relatives came and went, stayed and shared, while the old ones slept and dreamed and waited, and that was the way it was finally done.
But there are only two of us here to keep watch, to take care. Each day she is more tired, asks to sleep more and more often. Awake, she sits sad and silent, eating slowly in front of the television that she can barely hear anyway. I sometimes still hold her and dance with her late at night, when she's afraid and won't sleep. Sometimes I sleep with her to make her feel safe. Sometimes, no matter what we do, she's up and down all night, wants to eat, wants to go home. "Please, please," she mutters, unable to tell me what exactly would please her.
Someone cracked my rear passenger side bumper, and I have to go and get an estimate so that I can get it fixed. But then what. My brother would have to get my mother in his car and come with me to drop off (and then pick up) my car from the body shop. It is hard to believe that we know no one around here who can help with that chore so that we wouldn't have to put my mother through that. I don't even think that there are taxis in this little town. At least I've never seen any. I think I'd better start checking that out.
This is not the way it's supposed to be done -- without friends, without extended family, without a support system. But this is the way my brother insists, and I am too tired to argue any more.
I'd better check the phone book for taxi services.
And I'm still purging and packing and planning. While I cook, and feed, and clean, and sit, and hold, and hope.
ADDENDUM:
Whaddya know. There IS a taxi service right in town! Family or friends would be better, but I'll settle for a taxi when it comes to getting my car fixed.
When she flutters her hands in front of her nose, I know that she needs a Kleenex (well, we use Puffs because they're softer on her nose). When she taps her teeth, I know that she wants her flosser. When she reaches out with her right hand and opens and closes her fist, I know that she wants her cane.
She doesn't always use her self-devised sign language, but she's tending to do it more often -- especially when she's tired. And she seems to be tired more and more. The signs are often there. The words are often not.
On a sunny day last week, when I got into my car to go to the drug store, I flipped down the visor mirror to check for any stray chin hairs that my Tweeze might have missed. No chin hair -- but what's that??? Long white hairs in my eyebrows??? Now there's a sign. Definitely a sign.
I'm not sleeping well, my reflux is acting up, and that contact dermatitis I get on my elbow every once in a while is itching like crazy. I can't ignore the signs.
Signs that I need a break. I need a couple of days away from here. And so I'm going to my daughter's from Sunday to Tuesday. It's my birthday present to myself.
In two years I'll be 70. It just doesn't seem real to me.
Maybe it will seem real when my natural hair color finally grows in. Then I will see the most obvious of all signs -- the gray signs of being where I am in life.
Each year, on my birthday, I take a photo of myself. Each year, the signs are more obvious -- the drooping jaw, the sagging chin. There won't be much of the gray hair visible when I take this year's photo. But next year, there will be no denying that sign of this life fading to pale.
If I were able to live my life at the age I am today in the way I would prefer, I wouldn't be obsessing so much on my age and what I am losing with each day that passes.
But here I am, watching for signs and missing those times when the only sign I looked for was the one that said "dancing until 2 a.m."
Sometimes, if my mother naps in the afternoon, I try to get outside a walk a bit. Only I can't go out of earshot, because if she wakes up and can't find me, she'll spiral down into one of her dementia episodes.
So, like a prisoner let out into the prison yard, I walk in circles around the open area outside the front of the house. I go out in between snowstorms, when most of the snow has melted. I leave my footprints in the mud of now, rather than in the sands of time.
I find that I prefer to walk "widdershins," which is, in the rituals of myth and magic, counter clockwise. And which, if done while chanting an incantation, is supposed to generate productive energy.
What should I chant, I think, as I pace around my imprisoned yard. "Freedom!" If only.
Meanwhile, it's March and there's still a good deal of snow on the ground. Inside, the seeds I planted have already sprouted. I thought it would take a month. Now I have to transplant them all into pots and figure out where to put them. The windowsill is not an option. The cold radiating in would wipe out the whole crop. Sometimes my timing really sucks.
When she's on her 16 hours-awake binge, she talks in rapid fire nonsense, can't stop moving. If I can get her to sit down and eat anything, her foot taps on the floor like an idling motor, just waiting for the gas pedal to be depressed.
She opens drawers, moves her belongings around so that, later, I can never find what it is she decides she wants. She bends over and roots around in the bottom of her closet, packing and unpacking her shoes into a duffel bag. When she stands up, she's on the verge of falling over. Her back hurts. Her arm hurts. But I can't get her to stop. She is driven by her dementia.
Sometimes she will sit long enough to eat something, sometimes not. She rants about people stealing her money, her shoes, her dishes. It doesn't help that I show her the shoes, the money, the clothes. She is beyond reason. The world is dangerous and deceptive as far as she is concerned. She refuses to take any of her meds, and that only makes things worse. Eventually, she will collapse and sleep.
After sleeping away most of the past few days, she again started in with her manic behavior this morning. I slipped her med into her mouth (it dissolves on her tongue) and in fifteen minutes she had calmed down enough to have some of her fake coffee and toast.
And then she went back to sleep and is still sleeping.
She says she always feels cold, even under her electric blanket.
There is so much I should be doing to clean up my own space, to keep on with the purging of stuff. Instead, I shuffle around, waiting for the electric eye alarm to go off to let me know that she is up.
I am not used to living in such personal stasis. I have always courted change, created it if necessary. Here, my days are caught up in the cycles of her dementia.
In slow motion, I plant seeds, shred mounds of old paper files, watch my hair grow out gray. If I can just keep moving forward in these small steps, keep making small changes, I will survive.
I've been trying to find the time to plant the seeds I want to grow for my planter garden this spring. (No more dig-in-the-earth garden, where pests of all sizes devoured what I had last year.)
The sunny day seemed auspicious for planting, so I got out my supplies and got to it.
I planted seeds for flowers that might not be too tasty to the critters who munched and lunched here all last summer. Mostly, I planted ornamental hot pepper plants -- colorful fruit and foliage, and inedible by, or unappetizingly firey to, any living creature. But they sure do look pretty in pots.
Perhaps the full lunar eclipse tonight will also mean that it is an auspicious time for planting seeds. I guess I will find out in a few weeks time.
Meanwhile, I hope this also is an auspicious time to open up my CPU and insert more RAM. I printed out instructions, and am ready to tackle another project I've been waiting to find time to do.
My mother has had a few days of either sleeping for 16 hours straight or being up for 16 hours straight. Her 92nd birthday was on Monday. On Tuesday, we had a local Polish Catholic priest over for lunch. They knew each other well back at the old parish in Yonkers. She doesn't remember him. But he remembers her and tried to talk to her about the old days. She sat and listened, and the only thing she seemed to be able to say was "How long have you been here?"
She is growing smaller and lighter, a drying pod waiting to fall.
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?
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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.
She treats me like a handmaiden, issuing one-word commands that I'm expected to obey immediately. Coffee. Tissue. Shoes. Bathroom. (OK, well I do obey the "bathroom" command immediately.) Sometimes she can't think of the word, and so she's developed hand signals to indicate what she wants. She expects me to be with her all of the time. She even wants me to sleep with her. We are back to the boundary-less childhood from which I couldn't wait to escape.
I took a day off today, drove to Albany for lunch with my former work colleagues, including our boss. We are all female.
My cell phone rang while I was there. My brother had dialed my number for my mother. For ten minutes she wailed and ranted on the phone, mostly gibberish, but also condemnations for leaving her for my "girl friends" and threats to burn the house down and break everything in it. She laid on the guilt, guilt, guilt. "You've got to come home right now," she kept insisting. I told her that I would be home soon, soon.
Five minutes later the phone rang again. It was my brother, chastising me for the glass shelf in the refrigerator being sticky. Clean it yourself, I tell him.
When I finally get home and walk in the door, she just misses hitting me in the face with the handle of her cane. She's still mad. Hadn't eaten all day. Wouldn't take her meds. So much for brother as caregiver.
I think that she would be happier in a good Catholic nursing home, where she would have activities and people around to distract her, daily mass to attend. But my brother won't allow it. And he has Power of Attorney.
Meanwhile, I am held hostage to her increasing dementia, and I am making plans for my escape.
My mother has spent the past two nights unable to sleep. That means we don't sleep either.
And here's yet another reason to love the Internet.
At midnight, I get onto Google and search for "elderly insomnia." Lots of information there, including suggestions for drugs such as Lunesta and Desyrel.
I decide to take another tack and re-educate myself about our circadian rhythms and the function of the pineal gland (the famous "Third Eye") in producing melatonin, which makes us feel drowsy.
My mother gets practically no daylight, which means that her pineal gland is probably not producing enough melatonin. On top of that, her brain atrophy might be affecting the pineal gland as well, since it's located in the deep middle of the brain.
In the back of my "pill" shelf (you know, Omega 3, Resveratrol, MicoMedicinals, and other stuff I buy and then forget to take), I find a bottle of sublingual melatonin, 2.5 mg.
I take one and give one to my mother.
It's now 1:16 a.m. We are both still up, but it can take more than an hour for the melatonin to kick in.
That has wound up her sleeping schedule, one a.m. to one p.m. And sometimes she actually sleeps until it's almost supper time.
They used to call it "hardening of the arteries," , the condition that is causing her vascular dementia. It doesn't matter that I feed her healthy food now. Almost 92 years of kielbasa is a very long time. It's too late to take the cholesterol medicine she has always refused to take.
Yesterday morning she woke up at 8 a.m. agitated and muttering "We have to get out of here." "We are going crazy." When she tried to stand up her legs gave out. "Who's beating me?" she asked. "Everything hurts."
Every once in a while, in one of her altered states, she says, "I'm sick. I'm dying." And then she cries.
There's not much we can do except try to reassure her in calm, easy voices. We are here, we say. You are not alone, we say. Everything is OK. We will not leave you.
My cat is throwing up on my mother's rug while she's in the bathroom having a dementia meltdown.
My brother is yelling at me because I took his clothes out of the dryer (and put them in a laundry basket) so that I could put my mother's clothes (that I gathered and spot sprayed and washed) in the dryer.
I finally get my mother settled in her recliner to watch the Catholic mass on EWTN. The priest is already in the middle of his sermon, disparaging global warming because of something to do with God putting the sun up there for us.
While I make my mother lunch, I am half listening to what the priest is saying, and it sure sounds like unrealistic nonsense to me -- admonitions to live by the Church's rules, a disempowering assertion of who's the real boss of you.
I can't see how any of that sermonizing can be of much help to anyone searching for guidance in how to give personal meaning to the actual time he/she spends on this planet.
What I believe is that where psychology and spirituality (not religion) overlap , it is at that broad intersection where one can discover one's own power as an individual living in this place at this time. I am not using the word "spirituality" in any theistic sense, but rather in the sense of our animating energy, whatever it is that inspires us, awes us, puts a fire in our bellies. One's own "spirit." "Soul."
The shaman of ancient cultures knew how to create that intersection. I think that the best of today's therapists understand how to do that for today's seekers.
I thought my overweight nine year old cat was too slow to catch anything live. But yesterday, as I sat on the front steps trying to get some Vitamin D, she came trotting over to me with a lax lump of chipmunk in her mouth. I suppose she was (as cat's will) bringing me, the only mother she's ever known, a present.
I felt bad that I had to grab her by the neck and make her put the poor critter down, since she was probably very proud of her catch. But I did, and she did, and the chipmunk, unhurt, took off like a shot toward the sheltering bushes.
We rather like our chipmunks, who spend a great deal of time waiting under the back steps and in the drain pipes for the squirrels to leave so that they can graze on the fallen bird seed. I have noticed two neighboring cats, one white, the other black and white, slinking into our back yard to try and catch one of the little guys. The other afternoon I happened to look out the window to see the black and white cat succeed. I ran to the door and tried to frighten the cat into dropping his acquisition, but the fast feline was already out of sight.
It's a cat-catch-chipmunk world out here on the mountain.
It's also a world terrorized by an old lady who believes she is entitled to every minute of our time.
Again, here it is, after midnight, and I'm still up. Still blogging. Still wishing for a world where cats and chipmunks live peacefully side by side and where old dementia-ridden ladies are sweet and cooperative.
This is my 20 pound calico cat. She likes to lie in the backyard weeds watching the chipmunks freak out. She's too fat and lazy to even seriously chase them. But she's happy lolling around in the weeds that never get mowed.
This is our wild and weedy "front yard." I put in the hostas and the hanging basket. The other temporary contribution is not my doing.
Meanwhile, mornings seem to be the worse time for her. She's not sure where she is. She's not sure who we are. She wails and cries and won't take her meds. Still in my bathrobe, I sit next to her at the kitchen table, pat her hands, give her hugs, let her rant until she's spent. Eventually, I slip a calming pill into her mouth. Then she has a cup of coffee.(Well, it's not real coffee because she's been having IBS symptoms. But she doesn't notice any difference.) And that's the start of our day.
