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.
Meanwhile, if you’re hungry for something more important to read, go over to No Utopia to this post about what conservative and writer Andrew Bacevich had to say to Bill Moyers during a PBS interview.
Bacevich’s responses include this:
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.
Oh, I have finished projects — like this and this and this and this.
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.
What’s interesting, is that different websites quoting the above attribute it to different authors:
I don’t care who wrote it first. It’s damn right on.
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.
I haven’t seen anything appear through a search yet, but both Brian Williams and Keith Olbermann mentioned that, as the people gathered at the Kennedy Center to honor Tm Russert, a rainbow appeared over the NBC Washington Studios.
That is such a lovely and uplifting piece of synchronicity.
Not surprisingly, there are no rainbows over here in the mountains — just lots of thunder and rain and some kind of blight happening on my little “oasis in the wildnerness” garden. And I can’t take a photo of it to see if anyone knows what it is because I dropped my little camera while away the other weekend, and it broke. I bought a new little one but haven’t had the time to figure it all out yet or download the software.
Meanwhile, despite taking an antidepressant, my mom is having more frequent bouts of uncontrollable crying. She keeps asking for her husband, my dad, who passed away almost 25 years ago.
We are sitting at the table, and she is eating some spaghetti with a roasted sweet red pepper sauce that I make. She decided that she doesn’t like tomato sauce and she doesn’t like straight alfredo sauce, so I mix my pureed sweet roasted red peppers with a little alfredo, and she wolfs it down.
“Where are your children,” she asks.
“They live far away,” I answer. ” Where are yours?”
She looks at me and says, “I don’t know.”
I don’t know which is worse, Alzheimer’s or “old age” dementia. With Alzheimer’s you don’t realize that you’re not remembering. With dementia, you are torn apart by a sense that you can’t remember even though you want to.
I look back at my original blog, which I began in November of 2001. At that point, I was already taking care of my mom, living across the hall from her in a senior citizen apartment building. Even back then, when she wasn’t so bad yet, I was struggling to have some sort of life apart from caregiving. With each month that went by, I lost more and more of my own life.
I never thought that it would all go on for so long.
No wonder I’m burned out.
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.
