Spirograph Life

Life is swirling in intricate designs like a broken spirograph, wildly beautiful with no way of predicting how it will turn out.  I am clicking on my four-color ink pen however, and that gives me deep hope.  More than hope, trust.  I know that when I remove the disc, a thing of wonder will remain.  Even if it looks nothing like the designs on the box cover, or the ones that Colleen made at the sleepover we had when I was 9.

We are changing how we live, those of us sharing a house.  My friend is selling her home, the one we live in. Tom and I are beginning the process to buy a home - and no, not the one we live in because that would be far too logical.  Our fourth housemate is preparing for the change, too.  And nothing is set.  The disc is cracked and the colors are wobbly as we spin and watch the future revealed on the white paper of possibility.

Why do I hope and trust, knowing that this rotor is broken or that ink is only plain black, not vibrant red?  I don't know.  Somehow the alternative is worse.  Not hoping and trusting seems a sure way to die.  Dying without the last fascinating twist and and curve.

So moving sometime without knowing exactly when.  Working without knowing if I can advance in this company.  Writing my blog without readers.  Breathing without promise of another.  Doesn't that make sense to you?  I wonder about you, too.

Are you happy? When you look at the white paper, are you making designs for everyone to see? Can you see me as clearly as I see you? If we were wearing our PJs and listening to KISS's "Beth", doodling hearts, simple daisies and 3-D geometric shapes on our notebook covers, would we see each other?

Because that is what matters, seeing each other.  All the details of today are just what the design looks like with this spiro gear in relation to that rotor.  Change one of the components, the design is transformed.  Look with kind eyes at one another.

I am an artist without boundaries...

I am an artist without boundaries.  Some days I write, other days I piece a quilt.  Some days I heal wounded feelings and guide lost souls.  I take photographs to reveal beauty where it is doubted.  From time to time, I take a leap of faith and speak a truth without qualifying it (gasp!).

I have no boundaries. I write a blog on the very same day I take a walk in the park for no reason.  I live in danger, from here forward, of being arrested for not coloring in the lines.  I am daring like that.

Boundaries are good because they tell me where the world thinks I should not go.  Some boundaries are a  little more tricky, they are disguised as advice.  They masquerade as timelines and somedays.  But I am not fooled. Oh, I was fooled, mind you. I believed in rules and adherence was a virtue. For a very long time, I thought that lines made life secure, but now I know fences are just boundaries and I climb over them. I am a good neighbor like that.

Fences are the best boundaries ever made - because they are a dare, saying, "climb me, straddle me, ride me into the sunset"  They are the tower of vision and from top of the fence post, I can see for generations.  They have no sense of time.  And while I am on the fence, people all around me panic that I am lost.  They can't see I have simply become part of the eternal timeline.  And that when they are blinking in despair for me, I have jumped down and explored a blade of grass and the dew clinging to it and returned to the fence for another view.  In a blink of an eye, I have lived a lifetime and no one saw me jump down.  Or scramble up again.  They know that time is running out and show concern that I will 'never have it all'. 'That 'someday I will wish I had not sat on that fence'.  So worried are they that they are surprised when I climb down to take their hand and explore the meadow with them. Timelines become fluid and somedays are everydays. Because boundaries are magical like that.

Boundaries are meant to be crossed.  Ask the gatekeeper to allow you to pass through. Steal across a forbidden thought at midnight.  Tend to a boundary and give safe travel to another artist, another soul journeying through timelines.  Allow those that want to keep to the rules to keep to the rules.  Break one or two when it means adventure.  Risk when you feel passion and sit calmly within the lines when it is time to rest.  Life is best like that.

Validation

I am a writer and a photographer and validation is a rare commodity.  The trick, I am learning, is to not find my bliss in validation.  Rather, to find my bliss in the day at hand. The blog written, the print finished, the friend who holds my hand.

Tom is away this weekend at a photographer's convention.  A professional photographer's convention, the distinction of which may (or not) matter to you.  It matters to us.  Because, validation comes in many forms.  From the customer, money paying givers of life.  And from peers sharing drinks into the wee hours, celebrating artistic successes.  Mostly it comes from the inner voices telling us, "This is why you do it.  Well done.  Do some more."  Tonight Tom called to tell me he has done well.  His images were well received and he ought to be coming home with a few more acrylic awards to remind us why he does what he does.  But what was great was the tone in his voice.  Believe me when I say, this man is talented and we don't need any stinking judges panel to tell us that.  But man, it feels good to hear it anyway.  And in his voice was the delicious sharing that happens between two old friends, two artists, two lovers, "Hey, babe.  All four prints hung.  The class went great - they seemed to hang on every word.  And you were right, I could have taught for 4 more hours."

"I sure love you, honey."

I miss him when he is gone and, yet, the week before he goes, I could cheerfully strangle him.  And, he, me.

After a day of errands, a little writing, a lot of doing life, I will get some of that rare validation to deposit in my pocket book of bliss. Because when Tom calls tonight to spin good night magic across the starry strands of universe into our bed, I will know that we are a team.  That his victory is mine.  That tonight when he reads my blog, the day will melt away for him.  And he will whisper sweet everythings in my ear, "I am so proud of you, sweetheart.  I can't wait to read your novel.  Miss me a little more and I'll be home soon."

Bliss.

We've tried a new drug! Yikes!

Okay, this blog may not be for the faint of heart. Oh, no blood will gush nor will raving lunatics surround you as you read. But your heart may break or your compassion my gush forth uncontrollably - or you may just quit reading! So mote it be!

This is day two of the 12.5mg of the anti-psychotic drug we are using for mom to keep her in a place where she isn't inflicting harm to herself. We had tried it the first day the doctor prescribed it and hated the effects. She sleep all day in a complete stupor. So we switched the dose the the bedtime to see if the effects would be greater benefit without the drugged sleep, which was okay but didn't really help with the problem of picking at herself. Nor did it help with her overall agitation. So we decided to try the morning dose this week and give it more time to work for her.

Yesterday, day one, it went well enough. She dosed briefly before the family went to church. Once she has stimulation, she manages to stay mostly alert without dropping immediately into a sleep. She did seem to pick at herself far less - which is good since she has a temporary crown that is giving her fits and she has been trying to remove "whatever that is" at every opportunity. And we can't let her because the teeth might move, making it impossible for the permanent crown to fit. So the constant badgering by us toward her has made life a bit tense anyway. Back to the medication. Yesterday it helped noticeably (yes, still problems but less intense).

Today, day two, mom dropped off to sleep while we were all conversing at the breakfast table. She held her head in her hands and acted as if her head hurt. Of course, some of this is attributable to the chaos of four people engaging in animated conversation. But some was clearly drug induced. Then, when we moved to the living room, she truly wen to sleep in her chair. Sigh. I expected it. Meanwhile dad went to the loo and then he and Star had a conversation in the bedroom about "all of this stuff we are deciding and such". Mom woke up and went to the bedroom, I hoped, to help dad dress.

I have been working on finances and noticed she had been gone awhile. Half an hour by my best guess, maybe longer. I wen to check. She was just coming out of the loo, without her glasses and her hearing aids. She immediately went to the bed and laid down. Dad, by the way, had returned to living room (still in his PJs) and feel asleep in his chair.

So I asked mom to get up and get dressed which she was willing to do. Now we get to more drug stuff. She didn't know where the closet was (we were standing in front of it, wide open). I suggested an outfit and she agreed. So she put her shirt on. Backwards. I asked her to switch it and she giggled and did so. Inside out. But frontwise. So I asked her to try again. As she did so I realized she hadn't put on her bra, so we stopped. She tried to step into her bra and got tangled. She untangled and examined her bra. She folded it to determine front from back. Except it was sideways folded, as in profile. So I helped her put it on over her head. She was appreciative. Meanwhile I noticed the first shirt was stained so I tossed it in the clothes hamper and got another from the closet. No problem!

So, I left her to finish her dressing. 15 minutes passed. I went to check and she was on the loo again. I encouraged her to join us in the living room when she was done (she had invited me to join her in the loo). When she came out, I had to send her back in to get her glasses and her hearing aids. She did so and came out. Dressed fine. She declined to do the ironing that she often does (her pants) and wanted to sit. Dad is asleep in his chair. It is 10:30 and the medication reminder for him went off. He took his pills about 11:00. After toppling over his water bottle and his coffee cup.

He just took a phone call from the dentist and didn't say goodbye when it was finished, just hung up. Although this particular office manager mightn't have offered closure either. She is odd that way.

And at 11:20 in the morning that is the way it is. The 12.5 mg dose seems to greatly inhibit what is left of her initiative. Thankfully, she remains complacent and willing if asked to do a thing.

further bullet points because we need to get them listed somewhere.

Sigh. There is more to list. We have to track behaviour, changes inpersonality and so on. These aren't in any order particularly. I will note dates where I can.

• 07.11.09 Went into the folks' bedroom to lay out clothes for Mom. When I picked up her bra to put it on the bed for her, I saw that she had fecal matter on it. Since she puts in on by stepping into it, I am sure she rubbed against her backside as she put it on - or took it off.
• 07.11.09 I went to the store at 9:30 this morning. Dad was asleep as I was leaving and I woke him to tell him. I returned at 10:45. When I looked in on him, he was asleep. He had been awake because the paper was everywhere. I sat down with the folks at 11:20 and Dad was asleep. He has been asleep to this minute - 11:44.
• 07.11.09 The living room smells funny - I can't tell if it is Mom or cat problems.
• 07.11.09 Mom is still fussing and picking at herself. The dentist told Star we have to keep Mom's hands away from her temporary tooth or the permanent crown won't fit. We have to tell her to remove her hands from her mouth every few minutes. I have told her twice in the time it took to write this bullet point and the one above.
• 07.11.09 To make matters worse, last night my tooth started bothering me. Nerve. Root canal is in my future. I have been putting this off for a couple of years.
• 07.11.09 Star decided to hire in a parent-sitter for us last night, so we could go to kids night out. We were leaving them alone for brief periods of time, but with Dad's increasing frequency of falling, we have decided that they cannot be left alone. So we have to look for ways to keep our time away intact. Sharon came over. She was wonderful. Dad reports that she is a good listener. Nice, to have options.
• 07.11.09 Dad is still sleeping, talking in it, to boot! 12:07.

Time to make lunch for us.

Mom dumped trash on the car and too much is unknown.

The beauty of blogging may be that kindly advice and well meant suggestions are rarer here. For now, unless I develop a following. Two edges to that. Be read or be left to think in peace.

The last three weeks have been terrible. Unfair, unfathomable and remain unresolved. Where to begin. Bullet points, I think. To the purpose of documentation and release from my body.

• Dad has begun to fall frequently. His Parkinson's is progressive faster than anyone wishes (of course). In 28 days, he has fallen 5 times - once when neither Star nor I were home (grocery shopping) and only Mom to help him.
• Dad's voice strength is gone. He tries to project, but even if he gets his volume up to a discernible decibel, his muscles aren't forming the words well and it is all a blur. I mostly guess at what he says by context or visible clues.
• Star is so alone no matter how present any of us are to her. Being a primary caregiver is a lonely, heavy burden. (Which is not to say it is begrudged or put opn her or in any way a negative choice. But even carrying a bouquet of roses can be a burden if done for too long or without gloves to keep the thorns from the skin. I am just saying.) That tears at me, because it is not a condition any person of any status can change for her. A spouse, a friend, a lover, the President, a dog - no one could undo that condition. But perhaps any combination of those people could meet other needs for her. To that end, I remain her friend without question.
• Mom is inflicting injury to herself. She is picking at her fingernail beds and her face and her arms until the skin is raw or worse. And we cannot get her to stop. There isn't any reasoning and distractions can not last for more than a second. And the energy of our emotions lingers in her enough to make her disgruntled or frsutrated with us. Then she snaps at us or is defiant or is hurt. And somehow there isn't an answer.
• Tonight (July 9, 209) Mom just took off her shirt while we were watching a movie because she was hot. She had a thick afghan on her legs and feet, but decided to remover her shirt to cool down. Then, of course, was frustrated that I helped her put it back on. Can't blame her really, since it made her feel like her decisions aren't good enough.
• Which they aren't.
  
• She is sucking on her fingers. Sometimes to - I assume - take the sting out of the torn fingertips she has. Sometimes it is just to suck.
• She has taken to sticking her tongue out to feel the end of it between her fingers - like she is gauging the thickness of her tongue.
• Her willingness to go to adult daycare has stayed about the same. She goes but is exasperated when we get there if they aren't engaged in an activity. The daycare reports that mostly she seems content while there. They are not having any more success than we are in stopping the self inflicted hurts.
• Dad seems to be doing better now that his pain is managed better, but he seems to sleep more. Some days it appears to be all afternoon, other days it seems to be only frequent naps with alert spells in between.
• His feet are extremely swollen - because he isn't walking as much?
• Tonight he decided to walk back to the bedroom without his walker. Not a huge deal, I suppose, but the whole point of the walker is reduce the opportunity for falls.
  
• So, in an effort to help (mainly in an effort to relieve her chronic boredom so inherent in Alzheimer's), Mom decided to take out the trash. She removed the trash from the kitchen and carried it to the garage, using our indoor door to the garage. So far so good, except she hadn't secured the bag closed and then she tried to toss it over the ramp rail. The rail is about 4 feet high. She was trying to get the bag into the recycle bin because she thought that was the trash bin. And in doing so, the trash bag partially dumped onto the floor of the garage and onto the bumper of one of our cars. Sigh.
• We have been talking about finding a full care memory facility to place Mom in. We are being heartbroken repeatedly throughout the day and in our sleep. How do we agree upon a turning point - the point where we actually send her into someone else's care.
• We are getting great advice.
• I will blog that part of this process later. It is longer than this post in content!
• Mary is coming on Saturday. She is coming for several reasons but the one that she expressly stated was so that Star could get a vacation and so could Tom and I.
  
• And to top off the week, Star had to give out for adoption her little cat, Stubby, because he was causing her other cat, Marco to act out. Marco was so unhappy he had no choice but to get our attention. The decision was hard and seems to foreshadow the decision we will face with Mom and Dad. Yet, Marco is so clearly better with the littlest catlet off to his new adventures. Star is clear about all the reasons and such - but I can only imagine her growing sadness at all these changes.

There is so much more. Mainly we have agreed to increase the documentation of our journey. It is intended to assist us in knowing when and why we are doing what we do. And when it is time to change what we do.

Today has been hard. No question. May tomorrow be better.

We are transitioning into older old age - at the speed of too fast.

Today Dad fell. He didn't call us. He said he wasn't near the call button. He was standing, bending over to reach his slippers. He fell but managed to fall into a sitting position and didn't hit any furniture on the way down. He was near the bed. He managed with Mom's help (which is an unknown component, due to her Alzheimer's) to stand. He says there isn't any pain specific to the fall. Still, he had been planning to go shopping with us this morning but chose to stay home instead.

He has dozed all morning, which he has for the last few days. We linked initially to the change in his medicines since he wasn't sleeping well (many interruptions in the night to urinate). He has been having nightmares and our thoughts are that these may be due to his anxiety about the impending separation from mom when we have to face our reality and put her in an assisted living/full care memory loss facility. However, yesterday was his first day of full on (4 times a day) routine of pain medicine - I forget which one, Star knows - so it could be his pain meds making him sleep?

Don't know.

Mom is regressing quickly. She can't stop picking at her body to the point of causing bleeding and small tears in her skin. Her nose, her arm and her fingernail beds are the most abused areas. She just doesn't realize it, even when she is causing herself pain. It is a constant battle to keep her hands quiet and relaxed. She insists that she doesn't do anything or isn't doing anything... and she hates the band aids. Sigh. Her attention and comprehension are virtually gone. Even direct, slow communication is labored because she cannot follow. Yet, yet. She contributes spontaneously and on point just when it seems she can't stick with the general topic. Then, she says something completely non-related. She didn't recognize the butter dish this morning as being related to the pancakes we were having. And she usually is liberal with her syrup but today put it on the pancakes one teaspoon at a time. Seriously. But she specifically complimented me on the pancakes (calling them correctly, pancakes) and had four 4 inch pancakes. Go figure. Funny things she says: we were driving on Marshall Drive and she started to giggle and then commented how funny it was that the street was called Marshmallow Drive. Which made me giggle.

Sadly, the biggest change is that she can no longer perform even the most basic hygiene tasks. Yes, she can stand in the shower and she appears to be using the shower soap and washing her hair. There is no guarantee that she is actually cleaning her body properly, however. We recently had proof that she is struggling with frequent daily tasks like washing her hands after the toilet. I saw her go to the sink, three days ago, after using the toilet and rather than turn on the water and use soap, she picked up a washcloth, wiped her hands on it, leaving clear fecal marks on it and then lift the cloth to her face. Of course, I intervened, but what about when I am not there? And she has open sores from all the picking at herself. And she wants to help set the table and serve the food and so on. She is having daily incontinence when she wakes and we are not sure if it is solely urinary incontinence. Star has seen a roll of toilet paper thrown away with very clear finger marks on it that were made with fecal matter. Is she cleaning herself with her fingers? We just don't know.

So what is really going on? Well, it is hard to say. Star and I are exhausted. She has been doing this in one fashion or another for three years. I am coming up on my one year. Granted, I came in just as they - mom and dad - began to go down the back side of this hill. Which is hard - like coming into the middle of a private conversation and trying to figure it all out without interfering in the conversation and without intruding. Yet, having been welcomed to participate in the conversation, also trying to contribute real meaning. Both of us are beginning to snap at each other. Oh, not in the scary way or in disrespect, but in the way that means we are out of listening patience and processing patience. Thankfully, we see it and are paying attention. There is no way to truly get respite from this burden (willingly and lovingly accepted by each of us) for a real rest. Real rejuvenation. All we can do is look to the day when it will be different. But that day doesn't have one or both parents in it. So, that day is also begrudged.

The house is in turmoil emotionally because we have all identified the line in the sand that was the point where we will have to put mom in a facility. So I feel guilt (not the bad person kind, but the despairing no where else to go kind) and pain and concern. Mom is not without her intelligence but she is without a means of using it. Which is hard. She is so alone in this journey and we miss her because she is gone and she misses us because she can't find us. And we are all in the same room.

I worry that I am letting Star down. That my coming into the household was supposed to somehow make the time with mom longer and better. I know that it has. I know it continues to and I know that it will do so while we wait for a bed to come available in a facility. But I still feel like I "should be a better friend". (I know, I know - you tell the feelings to get in line behind the thoughts!)

I am afraid that I am letting Tom down. That, as the demands of mom and dad aging increase, he'll feel more and more disconnected from our life together. I worry that resentment will quietly enter into our relationship.

I am not overly worried about these things, either. I mean, I have perspective and I know what I know. And we all work so diligently to be loving, appreciative and compassionate to each other and to ourselves. But that isn't what I am writing about. I am writing about the moments when time stands still and somehow it landed full stop on a fear instead of a hope. And inevitably, time resumes its course and balance is blessedly returned. But for just a second - it hurts.

Money is a factor in all this but that is another blog, another day.

For now we hope: that we can find a place with a relatively quick availability for mom. That will free up our energies to keep dad at home longer. And it secures our home for ourselves a little bit longer. We hope, pray and plead for the house in California to sell. Money in almost any amount will be considered liberating. We hope that we can find ways to keep dad at homw until he passes, which is his desire.

For now, it is the fourth of July and there is cherry pie for dessert tonight.