no guilt, no shame

Mom isn't doing too well tonight. Her neck, below her ear is quite swollen and the doctor isn't sure what is causing it. She's on antibiotics, but is so weak, I just don't know if she has the strength to fight off whatever is causing the swelling.

My cousin Zee has been sending such loving cards to Mom. Here is a recent one:

To the family and care givers of My Special Aunt Ann:
I know that Ann was loved and very special to many people, family and friends. Ann was loving and always there for anyone in need of help. Ann never wanted to burden her family in any way. She was so strong for everyone to see. Many looked up to her for all she was and did. She never expected anything in return for all she did to help others. I thank God for all that you are doing to make her last few years as good as possible. No guilt, no shame.
Love and kisses, Zee

the artistic impulse

A recent article in the New York Times explains that the impluse to create art could originate with the intimate interaction between a mother and child. Below is a section of the article. A link to the complete article is at the end of the post.

"Ellen Dissanayake, an independent scholar affiliated with the University of Washington, Seattle, offered her sweeping thesis of the evolution of art, nimbly blending familiar themes with the radically new. By her reckoning, the artistic impulse is a human birthright, a trait so ancient, universal and persistent that it is almost surely innate.

Ms. Dissanayake argues that the creative drive has all the earmarks of being an adaptation on its own. The making of art consumes enormous amounts of time and resources, she observed, an extravagance you wouldn’t expect of an evolutionary afterthought. Art also gives us pleasure, she said, and activities that feel good tend to be those that evolution deems too important to leave to chance.

The most radical element of Ms. Dissanayake’s evolutionary framework is her idea about how art got its start. She suggests that many of the basic phonemes of art, the stylistic conventions and tonal patterns, the mental clay, staples and pauses with which even the loftiest creative works are constructed, can be traced back to the most primal of collusions — the intimate interplay between mother and child.

To Ms. Dissanayake, the tightly choreographed rituals that bond mother and child look a lot like the techniques and constructs at the heart of much of our art. “These operations of ritualization, these affiliative signals between mother and infant, are aesthetic operations, too,” she said in an interview. “And aesthetic operations are what artists do. Knowingly or not, when you are choreographing a dance or composing a piece of music, you are formalizing, exaggerating, repeating, manipulating expectation and dynamically varying your theme.” You are using the tools that mothers everywhere have used for hundreds of thousands of generations."



The Dance of Evolution, or How Art Got Its Start

thanks giving

Yes, I'm thankful Mom has caring people making sure she is as comfortable as possible, well fed and clean. I'm thankful my husband and I and children are here in Detroit and will be sharing dinner tonight with their 80+ relatives. All of this with the pinch of truth that Mom will be without family today as will be so many other elderly people.

There was an article in the newspaper the other day that said depression is a recent phenomena. The human species wouldn't have survived if as many people suffered from depression in our development as today. Connection with other people, family is a huge way to combat depression. Would this blog be necessary if I was surrounded by family as Mom had when she grew up? I think not.

humming along

Our dryer recently gave out on us, and we suffered without it for 4 days until a new one was delivered. Wet clothes were hanging off of backs of chairs, stair banisters, basically every free surface that would provide air circulation. With two kids, we go through what seems like a massive amount of laundry.

Once again, I thought of what a remarkable amount of work Mom did (with no thanks and very little appreciation) every single day. I suppose most women of her generation did the same. How did they do it without going crazy?

With 3 boys, a messy daughter and a husband who came home from digging ditches and working with greasy pipes, laundry was a huge chore for Mom. The remarkable part is that all of our clothes were also crisply ironed and mended, hung neatly in our closets the day after we tossed them on the floor. We never, ever used a towel more than once. Bed linens were clean and though the sheets were not ironed, the pillowcases were starched and ironed. She did all of this on top of keeping a clean and tidy house, home cooked meals that were delicious, and bookkeeping and general management of my dad's business! My only contribution was to vacuum and dust on Saturdays, hang out the sheets on the clothesline when I was out of school (oh yes, we always had sweet smelling, clothes line-dried sheets when weather permitted) and dry the dishes before we got a dishwasher. The boys did nothing, which was fine with her.

Really, I think I would have gone stark raving mad before collapsing from exhaustion. Mom would get fed up with us every once in a while, but mostly she went about her tedious chores, humming some big band song and occasionally adding a dance step or two as she worked.

rest in peace

Recently, an episode of the radio program This American Life told the story of a son who knows of his mother's plan of suicide. She slipped into the grips of dementia and after caring for her own mother who also had dementia, she decided that she did not want to get to that awful point and wanted to commit suicide before that happened. She told her son and asked for his support, though not his active involvement to save him from committing a crime. The son tells of the whole process.

Believe me, I've felt the same way as his mom, I don't want to die that way. But would I be able to take my own life? First of all, once I noticed the signs of dementia, would I even have the ability to do it? It seems so, going by this woman's experience. But could I?

We don't choose the diseases or injuries that befall us, but we figure out how live with them and if lucky, become a better person by learning from the difficulties of coping with them. There are all kinds of inspirational stories out there. I guess I'm an optimist at heart,and I feel like at a core level, I could survive about anything that came my way. I might be miserable and depressed, but I can usually see a flicker of goodness and beauty in almost anything.

I'm struggling to see this with my mother's battle with dementia. I have gained so much by caring for her but I see nothing gained for her. She clearing wants to die and tells me on a regular basis. There are moments of comfort and happiness for her but no ability to savor all the joyful moments in her life. Her cognizant self is but a whisper. What is left is her corporal self and her soul and is cared for in the best, kindest way.

But I'm haunted by her verbal wish to die. Is it the dementia speaking, or a moment of clarity. I, of course, can not make that choice for her. But as dementia takes hold of my brain, and the odds are that it will, will I choose to succumb to this awful disease, that robs one of their humanity? I try not to think of it very often.

Here is the link to the This American Life episode, titled: "How to Rest in Peace".
There are two parts, and a warning: the first act is rather gruesome and tells about a son coming to terms with his mother's murder. Act two is the one I've referred to and it titled: "The Good Son".



This American Life, Episode 342

floated away

Forgetfulness

by Billy Collins

The name of the author is the first to go
followed obediently by the title, the plot,
the heartbreaking conclusion, the entire novel
which suddenly becomes one you have never read,
never even heard of,

as if, one by one, the memories you used to harbor
decided to retire to the southern hemisphere of the brain,
to a little fishing village where there are no phones.

Long ago you kissed the names of the nine Muses goodbye
and watched the quadratic equation pack its bag,
and even now as you memorize the order of the planets,

something else is slipping away, a state flower perhaps,
the address of an uncle, the capital of Paraguay.

Whatever it is you are struggling to remember,
it is not poised on the tip of your tongue,
not even lurking in some obscure corner of your spleen.

It has floated away down a dark mythological river
whose name begins with an L as far as you can recall,
well on your own way to oblivion where you will join those
who have even forgotten how to swim and how to ride a bicycle.

No wonder you rise in the middle of the night
to look up the date of a famous battle in a book on war.
No wonder the moon in the window seems to have drifted
out of a love poem that you used to know by heart.

identity

On a day where folks get to try on someone else's (or thing's) identity, I realize that I've been living my life like Halloween for quite some time. By drawing Mom, I've almost stepped into the aged skin of one who is wasting away. I understand how the thin skin collapses and settles into crevices around bones, joints and veins.

Lately, I've been working long hours to meet my design deadline of Nov. 1st. The designs are for ski wear geared towards teen-aged girls, to be sold starting in fall, 2009. To get into the mindset of the people I'm designing for, I try to immerse myself in the appropriate culture and life. The ski slopes aren't open yet, but I do have my daughter, Chloe, age: almost 13, to help. Music is inspiring and reading the teen magazines and shopping the stores help.

At 54, sadly I identify with Mom's age more. But I do know all the top 10 groups on the music charts and who Zack Efron is dating. Tomorrow, as I email my designs into the ski wear company, I'll be able to take off this mental costume for another year.

gossamer veils

The Museum of Modern Art is having an exhibit of Georges Seurat's drawings, which I read about this morning. With conte crayon in hand I attempted to draw with no success. But it was enjoyable and I'll continue trying. When I showed Mom the drawing, she said, "I have no idea who that man is". I think that means she wasn't thrilled with my attempt. We're in agreement on that.

Below are some exceptional drawings by Seurat. From the New York Times: The quickness and the command of form, human and otherwise, that emerges from the sketchbooks dazzle in part because so little is known about Seurat. He died in diphtheria in 1891, after barely a decade of mature work. He was only 31. Even artists as famously transient as Raphael, Caravaggio and van Gogh made it to their late 30s. One who died younger is worth noting here: Masaccio, the 15th-century Florentine master credited with nailing down the vanishing point of one-point perspective, thus getting the High Renaissance rolling. Western painting’s ensuing exploration of pictorial space lasted more than three centuries, and Seurat’s art stands as one of its conclusions.

But as this exhibition emphasizes, Seurat first formulated his ideas about color and atmosphere on paper, in drawing, working in black and white. Applying his beloved black conté crayon to the specially textured Michallet paper that he almost always used, he created an impressive tonal range of velvety blacks, gossamer veils, crazy all-over scribbles, porous grids, methodical cross hatchings and uncrossed hatchings.

It could be argued that the future that Seurat helped create for pictorial space and figurative art did not really flower until near the end of the 20th century, when Conceptual art interrupted the linear march of abstraction and reopened all mediums to narrative. It is now more widely accepted that representation and abstraction can coexist within a work of art. Really, they can’t live without each other, and never have, as Seurat so sublimely affirms.



Seurat, Drawing His Way To the Grande Jatte, New York Times, 10-26-07

patchwork

Getting Mom sitting up in a wheelchair is becoming less of an option. Her neck muscles are weakened and she detests being moved in any way. We'll try from time to time, but for now, she will stay in bed.

With this in mind, I rearranged her room so that she is able to look out her window, which she seems to enjoy. And now there is a family friendship quilt hanging on the wall that faces directly in front of her. She soaked it in and spent a considerable amount of time studying it. The love that went into making it (by family and friends in 1939) is pouring out to her, I believe.

make it real

A quick sketch. We're meeting this morning with the nurse from Hospice to readmit Mom. I've learned a lot with this whole on/off process with hospice. With the philosophy of care for Mom to provide comfort, not to drag her to the emergency room once again if she gets an infection of something worse, hospice is the appropriate service. It's a bit unclear why she was taken off but I'm thankful for this wonderful service provided by caring people.

Here's a real treat, so if time allows check out this amazing blog by Richard Johnson. He's a Canadian artist that traveled to Afghanistan for the National Post newspaper. Sometimes it seems like we've forgotten about all the people serving in this war zone and his blog and gorgeous drawings make it real for me. The drawings bring me closer to the people of Afghanistan and the soldiers than photos would.




Here is a link to the blog:

Kandahar Journal

fresh perspective

There is something off in this drawing. I can't figure it out. Usually, if I put the drawing away for a few weeks and look at it with fresh eyes, it becomes obvious. That's true with problems in general. Ah, nothing like fresh perspective.

Last night, Mom lay with her hands clenched, crossed at the wrist on her chest. Like an Egyptian mummy. She's been perspiring quite a bit but running an average temperature. She doesn't look good. I'm worried. But she continues to amaze me with her ability to pull through. If she hadn't smoked a gazillion cigarettes a day, she would have probably lived to be 150. One good thing about dementia, it makes quitting smoking easy. She tried for years to quit, then finally gave up and enjoyed smoking. When she moved in with me, I slapped on a patch and she didn't remember that she'd ever smoked.

slash (some) adjectives

This weekend, the local chapter of Society of Children's Book Writers and Illustrators (SCBWI) held a retreat with the author/illustrator Denise Fleming teaching and working with illustrator attendees. She guided us in slashing adjectives and adverbs from our books in progress and spent hours critiquing our books individually. It was a delight.

Her website has wonderful activities for kids of all ages.

www.denisefleming.com


The illustrations above are from the book I'm working on inspired by Mom. They give a good idea of the theme of the book.

Mom is going back on hospice. We are meeting with them again tomorrow. Today she had a strange look about her. There was something different about her eyes. She had the sweetest smile, it brought tears to my eyes.

the almost moon

Teri Gross recently interviewed Alice Sebold about her new book 'The Almost Moon'. The book has gotten mixed reviews but the interview is worth listening to. Below is a link to the interview.

http://www.npr.org/templates/story/story.php?storyId=15284388




From Publishers Weekly's review of the novel:
'Sebold's disappointing second novel (after much-lauded The Lovely Bones) opens with the narrator's statement that she has killed her mother. Helen Knightly, herself the mother of two daughters and an art class model old enough to be the mother of the students who sketch her nude figure, is the dutiful but resentful caretaker for her senile 88-year-old mother, Clair. One day, traumatized by the stink of Clair's voided bowels and determined to bathe her, Helen succumbs to a life-long dream and smothers Clair, who had sucked the life out of [Helen] day by day, year by year.'

I must confess to feeling rage when caring for and doing unpleasant tasks for Mom. She will lash out at me, calling me names in her humiliation. Even though I know her words are formed in a brain riddled with dementia, the hardened arteries starving her brain of needed blood, even though I know that, old injustices, real or imagined or inflated will arise in me and the desire to exclude her from my life, be done with her is frighteningly strong. So in a way, killing her. Luckily, Mom's foul attacks usually last a short while and she becomes a frail, dear soul, and it's a pleasure to help her.

Using humor can transform Mom quickly. In no time she will announce that she's going to whip our bottoms if we don't leave her alone. Said with a twinkle in her eye.

sigh of relief

After a few stressful days of moving Mom, I think we can all breathe a sigh of relief and settle into a more peaceful, routine life.
There was some confusion with going off of hospice, and on top of the physical act of moving a person in the latter stages of dementia, made the last few days daunting. I'm thankful they are history now.

Hospice doesn't often have people getting to a point where they don't need this wonderful service. Many questions arise because our goal was to keep her comfortable and now that we are looking into an unknown future. Some of the comfort drugs may not be appropriate for long term use. Or are they? Life is scary enough for her, why not make her as comfy as possible.
The trick is to not to over medicate so that she is in a haze all the time. This will take a bit of experimenting.

The previous blog mentioned Mom picking cotton and that reminded me of a postcard I recently bought off of ebay. The family farm was near Altus, so who knows.... the people in the postcard could be kinfolk. The caption on the postcard says 'Gathering Cotton'. Not quite, it's pickin' and sweatin' and back breaking work.

handful of love

Mom has always had beautiful hands with long tapered fingers. She used those hands picking cotton throughout childhood. When I was 2 or 3 years old, she went out and picked cotton to earn enough money to buy me a new pair of shoes.

true grit

Mom will be moving to a new home on the 15th. A husband and wife run it and have experience with hospice and dementia cases and come with glowing recommendations. Getting this set up was quick and fairly painless, unlike the initial decision to get help with Mom and the search for an adult family home. Approaching this task at first was overwhelming, but the more I searched out advice and help the easier it got. Duh! But it's not as obvious as it appears. When a family is taking care of a loved one with dementia, every ounce of physical and emotional energy is spent and doing the research to even find someone to give advice can see daunting. There are so many generous loving people out there working in all kinds of organizations who offer their support and advice.

A funny story that tells a lot about Mom's character: after Dad's heart attack which left him dependent on Mom due to some brain damage, Mom stepped up to the plate and took charge. She was always a strong woman, but knew that she had Dad to fall back on and he was her knight in shining armor, especially in all things scary. Well, they had settled into bed and were fast asleep when Mom heard some shuffling sounds in the front hallway. Our house was small so it didn't take much noise to get one's attention. Normally Dad would have checked it out and being 6' 1" and fearless, we all knew we were safe with Dad around. Of course, things were different so Mom got out of bed and saw a huge man looming in the hallway. Scream? Faint? No, she rose to all 5' 4" of her indignant self and barked, "What the hell are you doing in here? Get out now!". The man quickly stammered, "Sorry, Ma'am. Didn't mean to upset you," and left immediately. Mom went back to bed. I don't think she even called the police. She had some grit, and still does, really.

a devil named Guilt

Today has been hectic because I've been checking out a new adult family home for Mom. It's been a difficult decision to move her in her frail condition. As much as I like the people who care for Mom now, they just don't have the qualifications to deal with Mom at her stage in life. The owner of the home has had training but the day to day caretakers have not, and I've been seeing too many little problems that have started adding up.

Guilt can blind one to the obvious. No amount of logic can knock that little devil named Guilt off my shoulder. No child feels totally comfortable leaving a parent in the care of others. And even though I'm not able to take care of Mom, that little devil will whisper, "People have taken care of their own for eons", or "If you really, really wanted to, you could have made her living with you work out". The blinding part comes when I see a loving caretaker feed Mom by hand, change her feces-filled diaper numerous times a day and all the backbreaking, tedious work but excusing wrong doses of powerful painkillers that knock Mom out. The intentions are so good but the training and experience of knowing when a person with dementia is in pain or is just agitated is just not there at her present home. It's not just one instance, but as I said, many problems. And the funny thing is that I of course feel guilty for basically excusing it all. There are no winners in this neurotic game.

My brother Tim, lives far away in Oklahoma but is always there as a sounding board and stands behind my decisions. Tim is 10 years older and I've always been viewed as the slightly daffy sister. Well, I guess I haven't really changed, but our relationship has since Mom's health started failing, and I'm very appreciative to have a big brother I can talk to.

The new adult family home feels perfect for Mom and comes highly recommended. We're lucky because they accept Medicaid and Mom's money will run out soon. That's a whole other blog, though.

This sketch really captures Mom's expression today. I tried to use very little shading and let the line quality do the work and I'm fairly happy with this one. A drawing instructor once told me to look at Picasso's line drawings to see how subtle changes in line width can show contour in a more interesting way than shading. Isn't it funny what sticks with you from the distant past? Teachers: have heart, we do listen and what is needed, sticks.

Filing through the wall

Drawing hands is always a lesson in frustration. This drawing is not one I'm proud of. My goal is to create the gnarled appearance using only line, no shadow. Will need a lot more practice.

Here are a couple of artisit quotes that helped me through this painful exercise:

"At times I fancied I knew how to draw, at times saw that I knew nothing. During the third winter I even realized that I probably never would learn how to paint. I thought of sculpture and started engraving. I have always been on good terms with music."
Paul Klee in his diary, 1901.

"What is drawing? How does one come to it? It is working through an invisible iron wall that seems to stand between what one feels and what one can do. How is one to get through that wall -- since pounding at it is of no use? In my opinion one has to undermine that wall, filing through it steadily and patiently."
Vincent Van Gogh to his brother Theo, 22 October 1882

Mom has settled into a loose fetal position. She likes to have her legs bent and her hands tightly closed. It's painful and upsetting to her when her hands have to be slightly uncurled to be washed. In this picture her hand is resting on a pillow that is tucked under her arm, giving her some support and comfort.

She told Barbara last night that Bill (my dad) was in the room, standing in the corner. That gave me chills. After Dad died (and before Mom developed dementia), she told me that Dad would sometimes come visit her in their bedroom. She cautiously told me this, adding that she didn't want me to think that she was nuts. He would come and stand in the room for a minute or two, not saying anything, and then would leave. I believed her, although I'm not inclined toward the supernatural, and I believe she saw him last night.

Barbara

This is Barbara who is a wonderful caretaker of Mom. She asked me to sketch her so she could send it back home to her family. She moved here a few months ago from Saipan, leaving behind two daughters, her husband, and a family that she is very close to. Barbara is a very sweet soul and takes good care of Mom. She's told me about her mother's legendary donuts, which are sold at the family shop. That may explain the sweetness!

Speaking of yummy things, here is a photo of my grandpa's watermelon's. He was so proud of their size, he posed his little Anna Ruth next to them for comparison of height. Yes, that's Mom. It's the only photo I've ever seen of her as a child. Back to watermelons, Grandpa guarded the patch with a shotgun and would not hesitate to fire a shot. The local high school boys made a sport of trying (unsuccessfully, according to Grandpa) to steal the prized Templer watermelons.

Friday's sketch

When I touched Mom's arm with my cold hand, her eyes got big as she said in her typical way, "I'm gonna hit you". Mom had returned for a moment. Another surprise: when I asked her if I could sktech her, she said, "Sure, just like you did yesterday". Amazing! When I show her photos of her mom and dad and ask her if she knows them, she says she doesn't, but sometimes the old brain makes some connections.
Here's a photo of her parents, Molly and Ed. Grandma made the most delicious pies and rolls I've ever tasted. Doesn't she look like a fabulous baker? Grandpa was full of old-timer stories. He once told me that Oklahoma was pretty wild in the early statehood days, and that he never had to shoot a man. It felt remarkable that he found that story remarkable. How often were men shot and what on earth had he witnessed?

2nd sketch

Mom was very alert today and talked more than she has in quite some time. The smile on her face was wonderful to see. She was very, very close to death about 6 weeks ago and has been receiving hospice care (Evergreen Hospice, which has been so generous and supportive). Somehow she has managed to overcome some amazing obstacles and grows stronger everyday.

She absolutely hates to be moved and lashes out and curses like a sailor. This is one way that dementia presents itself in her. So, she stays in bed all day which isolates her and in the long run, will not give her the strength to fight off the next bladder infection or after-effects of her reoccurring seizures. A constant question: is it better to let her lay in bed, isolated and losing muscle strength, or have her go ballistic while getting her into a wheelchair?

First Sketch

This blog is an extension of a communication tool I devised for my mother who has dementia. Mom, Ann, age 84, is residing in an adult family home near my home. She doesn't talk much and I keep running out of things to say. So, I thought it might be interesting to sketch her when I visit, while chatting and generally keeping her company for a bit of time each day. She's confined to bed now and is fairly lonely in her room alone so I try my best to drop in as often as possible.

Today she was in a good mood and ate all the ice cream I fed her. We had a nice time together.

The most difficult part of having a parent with dementia, for me, is feeling satisfied with how much I'm helping her. Should I insist that her caretakers get her out of bed, even though Mom hates it? Is she getting enough meds to help with pain? She can't answer those questions for me, so it's a guessing game. One that I don't like to play.