Sleep as a detriment

I very much enjoy Living in a Limited World‘s blog, and today’s was about the siren call of sleep.

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As my disease progresses (I have COPD, she has PR Multiple Schlorosis)  I find myself trying to find the energy that was such a challenge at this time last year (but still do-able), to where I am now – fighting off sleep and exhaustion constantly.  Her blog was all about that challenge today, which also struck a cord in me.  Shouldn’t we have some pride, to fight off the siren call to just sleep and do nothing?

With COPD, lack of movement is a detriment.  Therefore, too much sleep is a warning of how easy it is to let yourself fall by the wayside and your health get worse.

I’ve already done my first fishing of the year (yay, the license is here!), and while that adventure involved a paddle boat and 2.5 hours of pedaling (not constant, but more exercise than I usually get), the following 3 days were a twilight haze of being too tired to do anything.

Yes, I got out of bed.  Yes, I took my meds and had my meals.

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But, every time I turned around, I was asleep.  Sitting up.  (Which isn’t all that unusual for me, given my breathing challenges for sleeping when lying down).  Or, my body was tired enough that I was crawling into bed for a 2-hour or so nap each day.

I hate the fact that I’ve become a clock watcher.  I must maintain some sort of schedule, so I set the alarm to get up and be a part of the world (6:30 or so is reasonable, as I usually need a pee break about that time, anyway).  Thereafter, it’s a matter of watching the clock to see when it’s “respectable” for me to head back to bed.  Seriously!  I used to enjoy cable TV for keeping me involved in favorite late night programming, but since I cut the cable cord and live off internet television and Sling TV, the pickings are slimmer and my bed calls to me all that faster.

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Every day has become a challenge to keep moving (and I have yet to be disciplined to make it back to the YMCA – something I hope will be resolved once I get my new swimsuits as I’m feeling very porky / big bellied right now.  I don’t mind dressing in swim shorts and a swim shirt, but I draw the line at flashing anyone any belly skin).

Yesterday, though, I got out of the house (after a morning nap – having arisen at 6:30am, I needed another nap about 8:30am as I was freezing and tired). Did a bunch of paperwork for the lawyers (my daily job is to check all emails – something many friends are grateful for, as they are getting faster replies back, LOL), and generally kept my life in order from a paperwork viewpoint before moving on with my day.

Believe me, having my days scheduled out is a blessing to keep me moving.

Joining a girlfriend, I headed down to Silicon Valley to go bowling, and got stuck in 2 hours of bumper to bumper traffic (car accidents – not my bad timing).  Once at her house, though, I handed her the keys to the car as I was feeling a little tired – again! – and thought it was more respectful of her safety to let her drive vs. me insisting to be behind the wheel.  There’s just something about driving that I find incredibly boring (and always have) which is why I insist on driving a standard shift car.  The manual drive gives me something to do, to ensure that I stay engaged in the journey while behind the wheel.  Silly, but I’ll take whatever help I can get to avoid being behind the wheel when tired.

Managed to get home after a BBQ dinner, caught up on Survivor, and was in bed by 11:30 to listen to the latest chapter of the Foreigner series that I’m enjoying on Audio now that my eyes get too tired to read much any more.  Within a few minutes of hitting the bed, I’m out cold until the next potty run calls my name.

Since I’m sitting here freezing once again (and I can see beautiful sunshine outside my window), I’m going to jump in the shower and get my butt in gear in the hope that I won’t be home to sleep until at least midnight again tonight.

This needing to sleep all the time is absolutely for the birds !

 

 

Boundary Management

My favorite quip has been sticking with me through my latest busybody crisis:

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As I’m sitting here, in the Silicon Valley / San Francisco area, and worrying about my Aunt’s lack of self-care and her own failing cognitive abilities, I’m thinking of the pizza quote and trying to manage boundaries.  (Backstory on Auntie accessed here).

I’ve had no kids.

I’m not particularly maternal (though I’ve fought like hell over the years to give my Baby Sis fair and reasonable opportunities when she was being babied by our Mother or ignored / hurt by the negligence and hateful words and actions of our Father).

I love my five nephews with a passion that continues to surprise, given how seldom I’m able to spend time with them in the now 30 years since I moved away from the homeplace.

I love my remaining family (so many have passed away over the years), and I want them to achieve their dreams and goals.

I don’t think I’m particularly possessive.  I don’t think I’m particularly unrealistic about whether or not I’m loved and cared for in return.  There is some fondness there, despite the years and the distance, amongst all of us. When we are together for family events, I don’t feel unloved or unwanted.  Maybe like I am a source of amused tolerance due to my independent ways and opinions, but not disliked.  Some of the emotions I receive are clearly duty and obligation, but there is a bond.

I also don’t think I have “hero” tendencies.

If I can help I will.  If it won’t hurt you (enablement), I’ll help.  But, if I have no resources or it’s a boundary issue, I’ll take a stand.

I’ve gotten into a few challenging situations helping other people, but it’s been more about setting boundaries and limits so that I’m not trampled or taken advantage of, or my helping making their situation worse, vs. anything seriously going wrong.

I haven’t lost relationships over my interference or opinions or boundary setting, and the 4 relationships in my life where we are no longer speaking happened over a span of 43 years.  (Something I console myself with, as the failure of those relationships lives on in me as a personal shortcoming, regardless of any perceived thought of fault or cause and effect).

I still count those relationships though, as important to my life, even though the day to day contact is no longer there.  I occasionally (when something comes up) replay those relationships in my mind, wondering how they are doing, wishing them well, mourning their absence. All because someone who is a part of my heart never leaves it.  Not through distance.  Not through anger.  Nor through disenchantment.  I carry the original love and friendship and admiration I felt for them always, as a part of me, regardless of what happenened in the intervening years to cause frustration and silence to stop communication.

So far, the score is:

  • Daddy Dearest.  (Self-explanatory) 1977
  • Drog (gone but not resolved over lifestyle choices) 1983
  • Cago (boundary issues; disrespect of others) 1985
  • The Birdlady of Oregon (mental health / abuse) 2012

Boyfriends / lovers normally don’t fall into this category due to the easy complications of sex and pheromonal emotions to complicate everything, plus the added wrinkle of my stated plan to never be married / live with someone.  But, when it withstands the test of time for the friendship to survive whether or not sex is involved?  Well, then, it pushes that relationship into its own special category.

I almost added my long time friend / lover, to the failed friendship / relationship list, however, we managed to mend a fence broken in 2012 and somehow repaired our relationship (very carefully) and without a lot of discussion in 2014 – despite the fact that I’m very militant on some issues, and he’s very male priviledge on similar issues.  We care for each other more than we want to be “right”, so we reinforce in our minds what’s good between us, and avoid triggering hot spots whenever our two boundaries collide.  Plus, we’re older and lazier, and I think the devil you know for sex vs. going without plays a part in our current levels of detente.

The last situation proves what I know to be true, though – if there’s a falling out, I won’t forget you if you’re gone.

If there’s a way to heal the break, I will, because it’s so much easier, kinder, rational (whatever!), to speak and grow with someone than it is to wonder how they are doing and worry one’s brain over old conversations (good and bad) that can’t be expanded upon for new memories or healing of old hurts.

All that being said, though, I’m trying to figure out a way to interfere in Auntie’s life without getting her locked up, but simply to ensure she gets the physical health she needs despite her cognitive / mental health challenges.

I’m sitting here trying to figure out a way to interfere in her life, vs. letting it be all about survival of the fittest, because I know she wants to die (a very tricky call in a non-urgent, non-terminal situation) and I don’t think her broken bones are going to get her to that point (thankfully and unfortunately, as I do respect her right to live in peace and won’t object to her death when it comes as she has long desired an end).  I am worried, though, that her self-neglect will create other, majorly aggravating problems with her health and well-being that will cause additional substance abuse and mental health failings if not treated.  A very slow and painful way to end one’s life, in my humble opinion.

Like the sign says – I can’t make everyone happy.  I’m not pizza!  Yet my ego or hubris or hero mentality (whatever) keeps prodding me to get on the plane and see what’s going on for myself.

As well as demanding that I call Adult Protective Services for a judgement call on the broken shoulder and the broken wrist (and anything else broken from her second fall, on Tuesday evening, which may have done additional damage).

Ego.  Meddling.  Love.  Drama queen tendencies.  Rescuer tendencies.

Where are the boundaries for managing healthy and unhealthy relationships when a question of mental capacity is involved?

No answers here.

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Update:  She’s got a 1:30pm appointment with an orthopedic surgeon for later today.  She’s now convinced that nothing’s broken (despite the proof of the x-rays), and she’s looking at Yelp to see if his practice is “any good”.

(face palm).  I know, I know.  I do it to myself (the worrying).

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Bed time update:  The ortho says the wrist and shoulder AREN’T broken, but the hand is smashed in 3 places.  Not sure what to believe, but heading out on Sunday to see for myself.

Adult Protective Services vs Autonomy

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I am on the horns or the thorny path of a major dilemma.  Honoring someone’s wishes to determine their own end (autonomy) vs. knowing their ability to make a decision and stick with it are very impaired.  My Aunt’s “capacity” is what’s under discussion.  According to the law, “capacity” is broadly defined as:

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Add into this conversation the difference between child protective services, and adult protective services, and #3 on the slide below is the “gotcha” button for me:

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(I think there’s a typo on the 2nd point – I think the word is “make” vs. “take”, as in, “Autonomy to MAKE decisions independently of those who have responsibility for them.”).

At any rate, given my feelings about euthanasia – and this belief is applicable to the Aunt in question as she’s a huge Kevorkian fan – I am really torn when I have to sit by the sidelines and allow self-neglect (which I believe is seen as a form of self-abuse or “harmful” behaviors in many with mental health issues) vs. her self-professed wish to end it all, endorsement of euthanasia, and multiple (and unsuccessful) suicide attempts.

Plus, we have the drama queen quotient which kicks in with someone who has been diagnosed with COPD, with frontotemporal lobe damage, and narcissistic personality disorder.  She stays in bed 24×7, surrounded by piles of bills, mail, newspapers, animals, and expects to hold court whenever I show up to see how she’s doing.  I’m lucky to get her out of bed once a day, for maybe 3-4 hours when I’m in town, and I know I can’t keep her here if she doesn’t want to stay in this world.  The boundary issues are driving me crazy, though…

When I was last there in February, the urine and poop from the animals was overwhelming.  She can’t smell it.  Seems not to see it (although it is cleaned up regularly).  And, like Sharon Osborne, thinks that it’s an eccentric peccadillo which counts for nothing because she’s living in a mini-manion in a gated community, and the ability to pay someone else to clean it up a couple of times a week negates her need to house-train her animals or keep the place clean.

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So, I’m writing this blog today to purge myself of my inactivity / guilt / powerlessness (whatever is going on in my own tiny brain) which arises from simply getting the drama queen voice on the phone.  Example:

– phone gets picked up and dropped a few times

– once she’s on the phone, her voice is thready and swampy

– she cannot maintain the act, though.  At the 15th minute in the call, she sounds normal.

– Result = Drama Queen perception.

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So, I go from one extreme to another listening to this play acting, for trying to determine what’s needed, if anything is needed, and evaluating whether or not it would do any good to act given her autonomy and her underlying health issues.

Today’s Backstory:  My Auntie fell yesterday while out shopping with her helper.  Black eye.  Broken wrist.  Broken shoulder (all on her right side, her dominant hand).  She was with a paid helper, and instead of taking her to the hospital emergency room, the helper was told to take her to “Urgent Care” – which is not able to address the issues in any kind of credible fashion – and then allowed to refuse care to go home.  Seriously ? ? ?

I get on the phone this evening for a simple, “Hi, how are you, don’t forget the CNN GOP Town Hall” (because of her memory issues, and her love of politics, it’s an easy excuse for a quick call that spirals out of control).  I am immediately plummeted into the latest act of a play that has no sort of ending of any kind, never mind a happy ending.  And, it’s an endless play which love / duty / family obligations compels me to keep on watching.

Crazy !

Following up to yesterday’s real drama, Auntie is now trying to find an orthopedic surgeon to address her taped up injuries, and has no understanding that she’s created a nightmare of insurance workarounds for herself because she opted to bypass the emergency room.

Auntie doesn’t understand that her arm and wrist may need to be rebroken in order to get them to heal.

AND, the outsourced “healthcare agency” who provided the helper is being negligent in its (presumed) duty to insist that she get proper care.  All because she’s the patient, calls the shots, and is ultimately responsible for paying the bill.  While I would hope that they would contact social services for an adult protective services look-see, just from a liability viewpoint, I know that they won’t do that so long as they are getting paid.

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Arghhhhhhhh ! ! !

Theoretically, esoterically, I know that whatever will happen is beyond my control.  That doesn’t change my frustration nor does it make it any easier to accept her self-neglect.  Especially when one knows that she is not thinking clearly, consistently, and access to money is allowing her to continue with the self-neglect.

I’m all for autonomy.  I’m all for voluntary euthanasia.  It’s the involuntary euthanasia that I struggle with, as I see her needless suffering and related drama, and my hands are tied.  Her choices are not my own.  Her pain and suffering, no matter how much I love her and want what I believe is best for her, is not my own.

So, boundaries.  I’m sitting here trying to manage the boundaries and stay out of the day-to-day drama while hoping that she gets the medical care she needs.  And, thankful that she ran away so that she’s no longer in my direct care for facing charges of abuse or neglect for failing to ensure that she gets the proper and necessary medical care.

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Update:  May 15th or so.

Auntie has fallen again, re-breaking the hand and again lacerating her brow, because she insisted on taking the garbage out to the curb.  Herself.  Despite the fact that she has daily caregivers in to assist her with anything needing attention.  I am still on the “no travel” ban until further agreement with the doctor vs. the lawyer, so it’s a wait-and-see game for me, too.

Getting frail is not for wimps !

Checkups and COPD

Scared Woman

If I haven’t made it clear before now… My doctor is a saint.  Truly.  He puts up with the craziness of his patients, the insurance companies, the federal government, etc., and still keeps his sense of humor.

Into this mixture comes me.  High maintenance.  Hates most if not all medicines.  Asking questions about what more can be done to prevent the overnight throat mucus.  (I’m already using enough eucalyptus oil in my bathroom to kill any insects that might want to wander in, and sleeping with my head about 4″ above my feet to promote drainage during sleeping).

The biggest recommendation is tea before bedtime.  Tea.  Yukko.  Might as well drink down some dirt, it’s just that unappealing.  And, that’s before one realizes that I stop all beverages about 7pm so that I don’t end up having an accident overnight due to other surgeries to tighten up my nether regions and give me more muscle control.

However, we talk about adding marshmallow (dietary supplement – not the candy) to my diet, as there is a theory that it may help with respiratory issues.  Oh, and add vitamin D, too.  Joy oh joy, but I’ll give it a try.

From there we get into where he’s at with the government paperwork, the lawyer’s requests, and the general level of nonsense to try and get me disability benefits.

Life threatening Illnesses

He laughs and tells me not to look at the portal (where the patients can see their stats) as it will sound like I’m dying.

Even though I have less than a liter FEV1 capacity (the Federal Government’s statistic for when one qualifies for disability benefits), he still had to list all of my illnesses in the most dramatic fashion, and he doesn’t want me to think I’m sicker than I am if I read it.

Seriously?

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So, we had a good laugh about the fact that I take joy in the fact that, during one of our disputes way back in 1996, he said I was going to die if I didn’t do EXACTLY what he was telling me to do.  We had quite a laugh over the fact that I take pride in the fact that I’m so stubborn, I’m still here.  And, I still pick and choose what I will and won’t do based on what my body says works for it.

There are plenty of days when I feel fine and wish I was working.  And then there are plenty of other days when it’s all I can do to drag my butt out of bed.  No answers here for how sick I am, but I’m still hoping that I will be able to be approved for benefits and then get into some sort of Federal program for “protected” workers so that I can find a job that won’t keep me in penury, and which also won’t fire me because I’m feeling like crap.

It’s still too soon to tell how this will all work out, but for now it’s as good as can be expected.

Holiday Blessing

Having COPD has not changed my viewpoint.  I’m much more about finding non-denominational and non-religious blessings than I ever was, as only I am responsible for the fickle finger of fate life has dealt me.

Having started down this path as a babe in arms, I will never accept that I caused my disease, or that I have something to atone for from a previous life.

Yes, I’m just that stubborn and opinionated.

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That being said, though, I can admire someone with a strong faith and the courage of their convictions.

As someone who was raised with an Irish last name, a mix of Protestant, Catholic and Jewish family values, and a strong connection to my Scots forebearers, I’m a typical American – a heinz 57 mix of beliefs and values.

I know about religion, but don’t have any particular faith.

It does amuse me no end, though, to watch some of my more faithful friends scramble to save us all from our impending doom, as they post statement after statement about the world being at an end, and their efforts to get one more soul for their God.

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So, I hope you can understand my sense of whimsey when I went to find a picture to illustrate my point, and it turns out that Homer Simpson was picture No. 666 being added to my iPad (queue the dramatic music).

I’ve said it before, and I’ll say it again:  I have no idea what comes after this life.  “Next” is just a concept to me, and not some strongly held religious belief.  I don’t believe in promises from afar, delivered second hand, in the form of hopeful gossip to keep us calm on a dark and scary night as we pray for the return of the dawn and the light.  The return of the illusion of safety in the bright light of day.

While I will hope to be reunited with loved ones, doesn’t that also mean that I’ll be reunited with the ones I didn’t love, too?  If a God is merciful, doesn’t that mean that he gives second, third and fourth chances in the hope we will learn from our mistakes?

While I will aways hope that, if this life has some higher purpose beyond existance and endurance, that I learn whatever “lesson” I was set here to ingest.  I’m not holding my breath, awaiting my guarantee of the promised land.

In my case, though, despite all the TYJ prayers and posturing from friends and family, I just don’t think that it all makes a hill of beans worth of difference to whomever’s “in charge”, if such an entity exists.

Think about how heartbreaking it would be to choose among millions if not billions of people regarding which prayers are granted and which prayers are ignored;

– The child who prays not to be beaten – again.

– The trafficked woman who prays not to be raped – again.

– The mother who prays for her fragile child’s life.

– The unemployed father, praying for a job to feed his family.

– The family who lost everything in a “natural” disaster.

All these people couldn’t have done something wrong to “deserve” to be chosen to endure life’s travails.  Somebody (many somebody’s) have to be collateral damage, forced to endure pain or living nightmares beyond comprehension simply because they were in the wrong place at the wrong time.

If they all didn’t do something to “deserve” their fate, then would you want the job of the so-called God to choose among the inhabitants of this world to determine who is deserving of a so called, “perfect” life (think Donald Trump – the man won’t admit to a moment of difficulty along his petal-strewn path)?

No matter how I come to this topic, I just can’t believe that life is more than chaos theory.  We live.  We do our best.  We die.  Then, and only then, do we have a hope of finding out what the purpose behind this existence may have been or may continue to be, as we find out about what’s “next”.

So, as many of you are celebrating the ressurrection and the life of Jesus today, and are comforted by your faith, know that I wish you well in your beliefs.

As the sign says, “May all life’s passing seasons bring the best to you and yours.”

I’m off to enjoy the day in all its sunny beauty.

I’m NOT my disease

Wheezing Away, written by Billy Dursens, is an interesting blog that I check into on a regular basis.

He doesn’t write daily, but he writes about a lot of things that interest me.  While we both have blogs focused on COPD, though, we have very different viewpoints of life.  That’s why I like coming here and going to the MyCOPD Team social networking site – we all deal with the news of our diagnosis differently.

As I’m reading about the death of Intel Founder, Andy Grove, who passed away from Parkinson’s disease complications at the age of 79, I know it’s true that the battle isn’t over until its over.  And that the diagnosis of a critical disease isn’t all that we bring to this life.  (Check out Andy Grove’s Wiki if you want more info – he was one of the original designers of the Integrated Circuit – and the CEO of Intel).

In my case, I want to emphasize that I am not my disease.  I have a large and varied life outside of purging my energy through making jewelry, watching favorite TV series which make me think, audio books, reading, or blogging.  Passions.  Hobbies.  We all have ’em.

Billy touched me today, though, with his blog featuring a quote from Michael J Fox:

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For me, it’s the whole Kobayashi Maru sequence (geeky, old school Star Trek reference), that you deal the hand you’ve got, and you re-write the rules if you’re facing a no-win scenario.

Not saying that I can win by changing the rules or how I deal with the reality, but simply that giving up is not in my DNA.  Doesn’t seem like it’s in Billy’s DNA, either.

In my case, I have a good example in my older brother, who passed away from Brain Cancer in 2011.  Big Bro was never supposed to be the one who died, Golden Boy, as I was always the one who was ill and not expected to make it to this point in life.

To be here after my big brother is gone is really weird, and in some strange fashion makes me fight all the harder to enjoy every moment of life that I have, and to re-write the rules when they don’t fit what I want to know about my reality.

Mike with Blue Jay March 2010

Both Mom and Mike didn’t get enough time, and did the best they could to keep moving and enjoying life despite their heartbreaking diagnoses of COPD and Brian Cancer.

So, I especially enjoy the Michael J Fox quote as I came across it this morning as a reminder that the game isn’t over until it’s over.  We get up, we do what we can, and we try and pack in as much joy and fun as we can despite dealing with the reality of whatever any of us may be going through.  As long as we have breath in our bodies, we have a chance to fight anew.

And, yes, that’s my big brother feeding a wild blue jay (just like Snow White in the Disney movie) – the “Mayor” could have anyone or anything eating out of his hand because he was just that patient and charming.  There’s not a day that goes by that I don’t think of him and my Mom and remember how good we had it, despite any momentary upsets or challenges.

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Easter 1969 – Baby Sis, Mom, Yours Truly, Big Brother

COPD Socializing Resources

COPDteam website

As part of my journey through understanding self-care options, I found the above website (or, it found me and I accepted the invitation – I don’t remember at this point).

At any rate, if you are seeking conversation with people who are enduring similar circumstances, please check out this website.

Very interesting.