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Greetings from Home, finally.  It was a long vacation.  17 days to be exact.  Probably about a week too long for me, considering the circumstances.

I’m glad to be home and yet I wake up feeling sad and melancholy which is absolutely what a person is not supposed to feel after a rejuvenating vacation.  I need to make some changes.  I need to be more realistic about my life and expectations.

I’ve been a very high functioning person my whole life, able to manage most any circumstance and retain a positive attitude (most of the time) or at least return to it once the dust settles from any conflict/crisis/time of transition.  I think I underestimated myself when I took on the task of being the primary caregiver for my brother.  Right around the time our father is entering advanced age.  With no backup, just myself.  I sit here with tears streaming down my face at how exhausted I get.   How exhausted I am right now.

I wouldn’t have chosen it any differently I guess.  I threw my brother a life raft and I do believe he would not have survived otherwise.  But I need to make adaptations now.  I’m not as young or resilient as I once was.  I hit menopause as all this was coming at me and it’s basically kicked my ass.  I was already vulnerable healthwise in the endocrine department and it feels like I just can’t quite stabilize.  This has been going on for over two years now.

I have too many demands on me and too little support and I really don’t know how to fix it but surrender and find a way to ask for help.  This vacation, at the end, ground me to nothing.  Traveling with an obese (meaning hard to get around easily, fit in spaces and other complications) schizophrenic man and my 83 year old father who’s mobility has really taken a nose dive is, I’ll just say it, work.  And I love my family to pieces but I end up so exhausted and just wanting to run away.  Actually I did run away there toward the end for two nights.  I felt like I couldn’t breathe one more minute with all the demands I deal with that go basically unnoticed by anyone, including me, until it’s too late.  This is a pattern I’ve noticed.

I manage most if not all of all the travel arrangements, much of the activities we do, problem solving, all the navigation, some of the driving (while single handedly navigating because they don’t know how to use electronics for the most part),  lodging arrangements, fun activities, food prep, cleaning, shopping,  etc…I pay for everything then get a check at the end reimbursing me for my expenses–groceries, tickets, travel expenses etc.  I could go on and on and I’m sure it feels more exaggerated than it is right now because I’m so depleted.

I get very little alone time and when I do, it’s often interrupted with things like a plumbing emergency or need to come and greet the next arrival of guests. I overdo and take over managing things because, often if I don’t, I think they won’t get done.  I know this is part of my problem too–overdoing things when I should let the chips fall.  But time and again, when they fall, I end up repairing things anyway so figure I may as well do it on the front end.   And I do it well for the most part but I won’t lie, I had a 36 hour meltdown there toward the end of this trip. I’m surprised it took me that long honestly.

I arranged and paid for my own hotel room and just left my family on their own so I could recover.  I laid in that bed, got room service and took baths for 24 hours and got back to some semblance of myself that could function.  I was in an environment that is very hard for me to function in — I don’t want to go on and on about it but I will just say hoarding is a very real thing and in my family, it’s going downhill fast.  Hygiene and grooming are major issues now and it’s hard for me to exist in those kinds of environments without constantly cleaning, telling someone to change their stained shirt to go out to dinner, wash their hands, and on and on. I cleaned the shared bathroom at least three times a day.

I got myself in a clean, controlled environment in the beautiful Boston Parker House Hotel so I could find some semblance of the familiar and get stabilized. Once I came up for air, I had a great time roaming around the city by myself.

I miss my sister.  She would have been much better at all of this.  We would be doing it together, somehow.

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I was born a middle child and didn’t naturally develop internal resources to be on the front lines.  I have heard dozens of times recently “I don’t know how you’re doing it”, including from total bystanders just watching me.  I do believe there is some kind of master plan and everything is unfolding as it should yet I also feel like I’m failing, mostly to myself.

I realized after this trip I need help.  I even have to figure that part out by myself because there is this kind of unspoken and sometimes spoken expectation in my family that I will figure it all out.  On my own.  And I will, and I do.  I have an idea, from a seed that was planted at Rancho La Puerta last year–a life coach I really connected with.  I looked up her info again this morning.  I’m in a hamster wheel of caretaking and I need a fresh perspective.

But for now I need some recovery time.  I fear the future as it won’t get better and I don’t feel like I’m managing things well now.

I will say this.  I went to bed nearly every night and woke up every morning fantasizing about the puppy I’ll be getting.  Somehow I know this addition to my life will soften my heart and bring in a new joy and focal point.  In our family we’ve had no new life;  just death.  Endings and very few new beginnings. No new babies.  I’ve known for years now that it will be me bringing in the torch of our lineage, on my own.  I need to find a way to live in grace with these demands so I can feel good about how I’m representing. And right now I don’t feel that way.

On an up note, Alfonse did very little hallucinating on our trip.  His depression was there but not debilitating.  His daily functioning and social skills need serious work so I’m going to hopefully find someone to take that role over for me.  It shows up in a million ways (grooming, basic awareness of other people around him, etc) that concerns me as he’s ready to embark on a whole new life of social possibilities.  But he needs some basic training and I’m not the person for that job.

I want to be the woman.  I often say “I”m the man of the house” in my family and I’m the only girl.  I handle most every single thing that I would imagine a man, a good man, would.

I will say that, miraculously, I had two men express interest in me during my trip…in that way.  You know.  I feel so disconnected from myself in that way, I’ve risen to a level of patriarchy in my family role, that the female in me is ground down to sand.

Then I think about my little puppy and I feel my heart and mind and soul soften and come alive in a way that feels so correct and so healing for me.  I don’t know exactly how this new life force will impact me but I can feel it coming.

And it’s my light at the end of the tunnel right now.  At least a spark and the one I’m hanging on to right now.

I did have great times on my vacation but before sharing I just had to keep it real and get these thoughts off my chest.  I think the start of any big change is with awareness and this is the semi ugly truth of where things are at right now.

And now I need to take my brother back to his house so I can go to work.*  And be there for other people.

I surrender.

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* In the land of irony, just as I finished typing those words, John came downstairs looking sheepish telling me he’d tried to use my car last night to go get food after I went to bed and he couldn’t get in it because it was parked too close to the wall.  His face showed me something else so I pressed it and in reality, he tried to use my car and it wouldn’t start.  He said he lied to me out of fear I’d blame him for the car not starting.  This is the kind of thing I deal with over and over again…things that could be made simple, made hard.  And zero assistance to help me but roadblocks put up.  This is the life of caretaking and I need to stop whatever I’m doing that makes things worse for myself. Starting today.

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I’m so psyched about my fitbit that my Dad gave me for Christmas.

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I thought I’d be using it to track steps and exercise stuff but, at least for now, it’s become more a device of awareness to help me break out of denial about my horrible sleep habits.

I’ve experienced adrenal issues for a period of years now and have been working with a Naturopath on it.  He always asks how my sleep is and I say “sleep isn’t a problem, I’m good in that department”.  HA!  Joke’s on me.

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I SUCK in that department!  I have always been a natural born night owl so getting to sleep before midnight is a rarity.  I love my second winds and get creative or in to projects and all the while I’m sucking my life force dry.  That is the bewitching hour when your adrenals are supposed to be regenerating and replenishing their supply.  Not only am I interfering with that cycle but I’m USING that faux energy depleting myself further while feeling all “energized”.

It’s a great deceiver.

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This fitbit has raised my awareness for example waking up, thinking it’s time to get up and realizing I’ve only slept 4.5 hours.  I tend to forget just when I fell asleep.  With this it tells me how many hours I’ve slept, when I’ve been restless, when I’ve been awake and a percentage of  “sleep efficiency”.

I woke up this morning feeling fantastic.  Like my body just felt light and clear for lack of a better word.  Then I signed on to my fitbit site and saw this:

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Your sleep efficiency 97%

Your sleep pattern   asleep   awake

  • You went to bed at 11:26PM
  • Time to fall asleep 5min
  • Times awakened 8
  • You were in bed for 8hrs 33min
  • Actual sleep time 8hrs 13min

I am so psyched!  97% sleep efficiency!  I’m now doing my best to catch my sleep cycle before I hit that second wind and forcing myself to go to bed and I feel so proud of myself when I sleep well.

I truly believe this is going to have a profound impact on my health and well being.

Sometimes you think something is gonna be one thing but it’s just the container that holds another gift.

So here’s to good sleep!  And vitality!

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Happy Thursday!

I’m back after two days of utter exhaustion and a degree of depression/full on crankiness.  Pretty sure I got spun in to that state by all the head banging I did for hours on Tuesday followed by another session yesterday dealing with the mental health system for John.  I don’t want to keep going on and on but I do want to document our struggles because I intend to take it to a higher level and just want to have a chronology to rely back on.  I also know that they are reading here, at least some of them, and I hope they do (not that I think most of them care but it just feels good to know someone’s getting called out and knows it sometimes).

First of all, John is doing well right now.  Fingers crossed this continues through the holiday as we will be all together in Sedona for a significant period of time.

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I don’t know about the rest of you but something that just gets under my skin are issues around injustice.  Particularly injustice toward those who can’t defend themselves (the infirm, animals etc).  It makes me absolutely nuts.  I tend to gravitate toward using my helping in the world time around these themes.  I won’t dwell on the recent issues with Alfonse but just to say, we have a young new attorney helping out in our attorney’s office who worked in the mental health system here for years before going to law school.  So he knows the AZ system inside and out.  He spent a lot of time on the phone with me this week and I can’t forget this exchange.  I said to him “I feel sometimes like I’m getting paranoid myself thinking these people are now actually trying to sabotage my brother’s mental health status by blocking him from receiving services now–not just not providing the services but actually setting out to block him from receiving any elsewhere”.  This attorney responded (paraphrasing) “you’re not paranoid.  I suspect that’s exactly what’s happening.  I saw it time and time again.  A squeaky wheel calls them out on their incompetence and then they get sort of targeted and punished”. 

Yes, he sure did say that.  Punished.

That just makes me want to bawl.  Again, what has happened to these people?  Did they ever, at any point in their career, care about the population they are hired to help?

It was validating to hear those words and he just said “You’ve been hitting that delicate balance most advocates go through–not calling them out on their not providing what they are there to provide vs. calling them out then getting targeted”.  Either way, it’s just hideous.  I just said “they messed with the wrong family if they think I will sit back and let them neglect or worse yet, harm my brother”.

The problem is we have to keep him engaged in the public system for groups and classes that are with other mentally ill people because that is his peer group.  Completely mainstreaming John is not a smart idea.  We can’t deny he has a major mental illness and needs to be around peers who also relate.  The public system is where these people are.  I have high hopes for this clinic Wellness City where, so far, we’ve been treated with kindness and respect, they have an active community and he will enroll in there asap.  The problem is, the ACT Team removed him from the mental health system entirely, having him sign a form that says not one word about doing that but effectively accomplished that.  This is the kind of thing that I mean about punishment.  He was not clearly informed nor did he understand these ramifications.  He just thought he was removing himself from their cesspool program but lo and behold he closed his entire case through signing that paper they placed in front of him knowing that’s exactly what he would be doing.  Now they don’t have an appt. until Jan. 17 to get him back reenrolled.  It’s just all so damn frustrating and designed to keep people sick and get them sicker I believe.  There are systems, as hard as it is to believe, that are in fact designed to keep participants from getting well–some of them are called Insurance and Pharmaceutical companies but I digress, sort of.   It’s just so hard to wrap my head around but living inside this with him all these months I’m getting the clear picture of the blackness that exists out there.

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And my brother is the sweetest most deserving person you could ever meet.  I’m not, I’m a pitbull when it comes to protecting people I care about and I do have fangs that have a mind of their own sometimes and will arise in these kinds of situations, but not my brother.  He’s like an innocent child.  How do these people sleep at night?  Seriously?

Enough of that, I’m getting myself worked up again.

I fell in to a state of exhaustion the last two days triggered I’m sure from all of that head banging and also just from ….well, Christmas.

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I didn’t even realize this year was the 25th anniversary of Cindy’s death until a producer from the Ricki Lake Show told me as I breathlessly fast-walked down a sidewalk in Central Phoenix heading for the Arias courtroom last Spring.  He indicated it was part of the reason they wanted me on the show–that anniversary. I remember stopping in my tracks, doing the math and saying “you’re right, it’s 25 years”.

Not exactly something you want to call a  milestone but I guess it is.  I’ve survived 25 years since she was taken that Christmas in 1988.  We all have.  It’s kind of hard to believe.

I’ve said it before and say it again, grief is an unpredictable mistress.  It will let you slide when you most expect her visit then land on your doorstep with all of her suitcases and carryons when you think you’re just breezing along with your life.  She hit me hard this week.  I had a hard time even staying awake yesterday, in fact I took an afternoon nap and would have stayed in bed had I not had plans that evening.

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Like with the trap my brother landed in that has no clear exits, grief can just squeeze you in to itself and hold you there making you it’s own sometimes.  For as long as it wants to until you surrender.

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I tend to jump in to creative projects when I’m down like that as it’s one form of medicine that both distracts me and opens my brain in a new way and then I often end up with something I feel good about on the other end.

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Night before last I made a small tree honoring Travis Alexander and Cindy.  I have written before about the astounding similarities in the two of them–both 30 when they were murdered, both lived in the same city, both murdered by sociopaths who carefully planned and covered it up after conning them, both were killed in nearly identical ways, both left to be found by someone else and on and on….

No wonder I got so sucked in to that trial.

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I’ve gotten to know Travis’ siblings, some quite well.  So I made this little tree to send one of them which seems like something that could decorate a gravesite but it will end up wherever it lands.  It has a lot of personal meaning to me this little tree and it did make me feel a lot better after making it.  It’s sitting on my porch right now waiting to be picked up by the mail carrier.  As is the bag of my sweet spicy nuts I made ten thousand of this Christmas.  They turned out pretty good (burp!).

Last night I was invited to go over to Amy’s and make cookies with her kids.  I was driving over there, exhausted, thinking of how I was going to explain I couldn’t stay long, that we’d make this one batch then I’d have to leave. I was just that flattened, emotionally drained and physically spent.

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When I got there though, being with her girls, with Amy I perked right up and ended up staying for hours.  We exchanged all of our Christmas gifts (I got SO MANY cool things like a cactus garden and Tim Gunn’s memoir..yay!), watched Project Runway, had dinner and of course made our cookies.  It ended up being just what the Dr. ordered as I felt a whole lot better when I got home and this morning didn’t wake up with that terrible feeling of dread I’ve been fighting for a few days.  While trying to perk myself up making plans and doing fun things.  That feeling, when attached to you, is damn stubborn and wants to keep reminding you it’s still there, waiting. Waiting to be acknowledged I guess.

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When I got home last night I ran in to the best article I’ve ever read about grief.  I’m going to share it here.  Here is an excerpt that really spoke to me:

If instead of pretending we are okay, we would take the time to wail, to weep, to scream, to wander the woods day after day holding hands with our sadness, loving it into remission so it doesn’t turn cold inside of us, gripping us intermittently in the icy fingers of depression. That’s not what grief is meant to do.

Grief has a way of showing you just how deep your aliveness goes. It’s a dagger shoved down your throat, its handle bulging like an Adam’s apple protruding from your neck, edges pressed against both lungs, creating a long, slow bleed in your chest that rolls down the edges of your life, and you get to handle that any fucking way you want.

If you have been sitting on old grief from your childhood, your failed relationships, the loss of a family pet when you were nine, and any other losses you were unable to honor in the past, this left-over grief will also come through the broken damn. Let it.

“Grief does not change you… It reveals you.” ~ John Green

And herein lies the gift that cannot die. It changes the course of your life forever. If you allow yourself the chance to feel it for as long as you need to — even if it is for the rest of your life — you will be guided by it. You will become someone it would have been impossible for you to be, and in this way your loved one lives on, in you.

http://www.rebellesociety.com/2013/12/18/5-lies-you-were-told-about-grief/

Read the whole thing. I want to know this woman.  She speaks a language I understand and want to speak more boldly myself.

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I’m just going to leave this post on that note so we can all ponder these thoughts together.

I’m doing ok.  I really am.  I’m looking forward to our Christmas Eve Dickens dinner party we are planning, our pizza Elf movie party this Sat. with four of our Sedona friends at our house and putting up our tree up there this weekend.  When I think about it, I think it’s a pretty damn big miracle I can look forward to anything around the holidays.  Ever.  I still don’t send out Christmas cards anymore.  That ended in 1988 and never kicked in again.

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I am sincerely looking forward to it all this year…and to my heart opening wider to my family and taking the risks that I have to take to get there too.

And I’m grieving, acutely grieving again all at the same time.

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And I’m going to take care of myself in a very deliberate way.  Extreme self care is what I told my hair stylist/friend this week.

That’s the name of the game right now and I’m gonna play it.

Now I gotta run and get to the gym and a mani/pedi.

Hope you are all feeling everything you are feeling right now and that’s the most honest wish I can offer up today.  For me and for you.