Facing Frailty with Faith

The post I created on November 17, 2015 was about how I finally crossed the line between void and light….though the dimness was about the same but my psyche started leaning more towards the light instead of the dark (and bed).  I started reducing my meds, and then I started putting requirement on me like getting my CNA and HHA so I could get a job with hospice.  The only thing I learned from that course is that being a CNA is not what I want to be.  The information and skill set I learned helped me with Mom, but again, I don’t want to do that again.  Maybe if I were a mother myself the wiping my mom’s nether region wouldn’t have been as traumatizing……I dunno.

I mentioned that I came down on my anti anxiety pills, which is good, and I haven’t gone back up other than as needed for extreme stress/anxiety inducing situations….like the day Mom died.  I think I took 2 Xanax throughout the day instead of just one.  However, I’ve held steady with my other meds for the last 2 years since I wrote that post.  Now I’m unemployed, I have until February 10 before insurance goes poof so I need to get back into the field of being an in home support person.  I just signed up for school, so that’s going to put a strain on me, and I can’t exactly go down on my meds at this point…..

I’m scared.

What if I can’t afford COBRA, or Covered California?

What if no one wants to hire me because of my age/weight/toothlessness? (Mom liked to hammer on that nail all the time and I can still hear her “You’d be so pretty if you just got your tooth fixed” in my head).  We’ll get to this kind of stuff some other time.

I am teaching myself to self-soothe that doesn’t include cookies or candy or shopping.  I remind myself constantly that Heavenly Father didn’t create me to fail.  If I fail it’s because I fail to try.  I have to put my foot out to step and trust the ground will be there.  And though all these sentiments are rather trite they are no less true.  I just don’t know how to quell the fear that I a going to overload my brain and then rush back to the safety of my bed.  Staying in bed is so safe, so peaceful and so not the way to get anything done, but the warmth convinces me not to care……

I guess I sort of went off point, or maybe not.  I’m not, for the lack of a better word, better.  I’m also not back in the void.  I can feel the attraction still, the safety of the known.  I am looking forward to taking the Light-Rail to school, studying in the coffee shop just down the street from the school and how I’m going to study.  (key words, looking forward to)  I have the mobility to go back to the void and look in and choose not to be subsumed, and it can be a big pull some days/hours, or I can walk back out to the shaded sun I’m in now.   Maybe it will break me, maybe I’m not ready but it’s not going to stop me from trying.  Papa always paraphrased Matthew 17:20 to me:

If ye have faith as a grain of mustard seed

nothing shall be impossible unto you.

I should be able to muster up the faith of a tiny mustard seed.

New Year, New Dynamic

Mom died.

It’s been about seven weeks since her passing.  Time seems to go buy at different speeds at the same time.  I’ve hit new levels of stooopid I never knew I could.  I’m still not eating right, sleeping well or taking care of myself as I should.  The only thing I’ve been capable of doing is making crochets shawls.  I can count to 8, I can sit and watch it grow and not have to do anything else.  Since December 1, her last time to the hospital, I’ve made seven shawls.  One is my “house hold” shawl because I would rather wrap up than turn up the heat.  I seem to  keep going back to the hook for comfort.  They feel like hugs.  I’m trying to make one for all the women/girls in the family for the boat ride out to skater Mom’s ashes.  Hopefully I will be more back in the world by April.

I  haven’t really cried yet.  Maybe writing this out might break open the flood gates and release the torrent of tears that are just waiting for the opportunity to flow.  I don’t know why it seems so hard to express myself that way.  It could be the general fear of crying; if I start I won’t be able to stop.  Or it could be the medication is still providing the buffer that keeps me from completely dissolving into a puddle.  I’ve gotten the basics down in my journal but not really the emotions.  I wonder if I’m actually going to have any.  I mean, it’s not like this is out of the blue.  I’ve spent the last 12 years taking care of her as she, well not exactly slowly, declined.  The last three to five years have been the hardest, and living with her and taking care of her really tore the wellspring of hope out of me several times.  It did happen really fast, in the hospital on the 1st, back home by the 5th, then dead by the 10th.  There wasn’t  a rally coherent good by on her end due to the hypoxia from the lack of oxygen.

My team of professionals and myself have held the theory/belief that part if not most of my depression and anxiety was due to my environment.  Maybe I’m overmedicated now that the environment has changed or maybe I’m so completely overwhelmed (I had my car broken into after the memorial service and I drove myself to see my sister C. run in the Carlsbad marathon, I lost my job when I lost my mother, going back to school in February, and creditors filing suit).  I’m overwhelmed.  I guess I should stop trying to push myself so hard and try to do things one day, one task, one blog post at a time.

I’ve had some dark days, but in general I still have the light and hope for my future, so I don’t believe I’m back in the void, although, truth be told crawling back into that warm dark place to hide sounds really inviting..  I’ve had more bouts of anxiety than depression, I’m becoming more aware of my desire to take care of myself (like eat, bathe, change clothes, etc.)  In some ways I feel like I’ve been reborn into this world but I’m going to have to fend for myself.  I’ve got to find a job that pays well enough for me to write until the nectar of creativity runs dry.

My nephew gave me the best advise yesterday.  I didn’t want to go home, it felt like a trap so he told me when he feels that way he goes out into the world and tries to find something beautiful.  So, I went home briefly and grabbed Sammy and we took a trip to the coast and watched the boats in the marina and on the way home on Highway 35, I got pictures of a beautiful sunset over the foothills in the valley.  It was beautiful and my anxiety was calmed.

Entitled to Surrender

I’ve been looking for a definition that encompasses my meaning and feelings for the word entitled.  Microsoft wasn’t helpful, nor were the additional sites it sent me to.  Merriam Webster Dictionary  was accurate but didn’t quite go far enough.  I went to the Urban Dictionary and it was almost spot on but the language used on the site isn’t as refined as I would prefer it for my use here.  So, I’m going to give you my definition:

Entitled

The belief of when you are doing something that benefits the whole you should be compensated, taken care of and/or relieved from your efforts from time to time.

That said, I’ve been fighting with this concept all through the holidays.  It really hit home when my nephew gave his 18 month old nephew an iPad mini.  I’ve wanted one for like ever but I never have the money in hand at the best time to buy so I’ve just made due with my iPhone and my Kindle.  Honestly, this almost brought me to tears.  It shouldn’t but it did.  I feel like I’m completely forgotten by the outskirts of the family.  The Grandkids know what a handful their Grandmother is but as long as it doesn’t impact their schedule or cause them any hardship they deign to visit for an hour or so or call once every eclipse. [Don’t get offended, I’m not done yet.]  After I wiped the tears away about the give before anyone could see them, I started to get angry.  I’m doing all the heavy lifting both emotionally and a good portion of the time physically but the 18 month old is entitled to an iPad to help him learn his ABCs.   (I’ve got an opinion on that but it’s not suitable for this forum….I’ll have it on Psyche-Stew soon.  Then on top of all of this, my sisters have been pulling back and recognizing I need a break but only willing to dole it out in one to four hour increments.  I need a Freaking Vacation….one that doesn’t include Mom, or a massage, or even just a weekend away so I don’t have the constant static of the baby monitor hissing in my ear while I’m trying to sleep.  But mostly the recognize it but are too busy to do anything about it.

So, for kicks and giggles I sat down and figured out just what I feel I’m entitled to.  We have someone during the day to take care of Mom, which is very helpful for me. However, that leaves me with 18 hours a day M-F and 24 hours per day for the weekend when Mom is all mine.  I would want the three of us to rotate the weekends, for the sisters to come three to four times a week to spend time with Mom so she’s not completely glommed onto me all the time, help with cleaning the house and cooking [because, honestly, I suck at both]. send me to a spa on a regular basis and understanding when I reach out to them for help and/or support I don’t get a litany of the things they’re doing and a bright “Hang in there” before I hang up.

To sum it up, I want them to take over preferably all of the work and leave me with the praise and accolades I receive when people see me and I tell them what I do. Not much, really.  😉

NO ONE IS ENTITLED TO THAT.

The only thing I am entitled to is my life and my free agency.  Beyond that, if Iwant to be entitled to something Ihave to find it within myself to provide those accolades and care I crave.

That said…..

I surrender.

Merriam Webster got it right this time defining Surrender as:

Surrender

: to agree to stop fighting, hiding, resisting, etc., because you know that you will not win or succeed

: to give the control or use of (something) to someone else

: to allow something (such as a habit or desire) to influence or control you

I’m not talking about backing away from my commitment to my mother or to my family.  I’m not going to quit anything that I am already doing,  that is not an option unless I plan to surrender who I am entirely.  No, I mean I’m going to stop fighting with reality and waging a spiky-word warfare with unsuspecting siblings.  My life, for now, is to be here for Mom, and I can’t do that fully if I’m allowing unhelpful thoughts discourage me and distract me into thinking that I’m being taken advantage of by the whole family.  I surrender the  illusion of entitlement.  I realize everyone is doing the absolute most they feel they can do and I can’t ask, demand, or whine about them giving more.  I’m the one who volunteered for this, to be the caregiver, and I will continue to give until my service is complete  My choice.  My free agency.  And that is how it is for every persons life.  I know that kind of has an over tone of I’ll-show-them, but I’ll assure you it’s not.  I’m anxious to live my life, to get out and meet the oncoming trials head on and ready to wrestle them to the ground.  For the first time I think in ever I am going to put my needs (writing, meditation, mental health, etc.) before anyone else’s.  I will be my next caregiving opportunity, for that, I believe, I am entitled.

Miracle & Milestones

Miracles abound when you have faith enough to welcome them.

Last Thursday I took a trip up to visit Sammy (the parrot) as my sister spends time with Mom on Tuesdays and Thursday evenings which gave me the freedom to go.  (Sammy didn’t want anything to do with me other than take a chunk of flesh out of my fingers, but that’s another tale of woe.)  I called to check on Mom while I was there, as I’m want to do when I’m not home to make sure she knows that I worry about her and she said she was anxious for me to come home because she needed to talk to me, but she was soooo apologetic I wasn’t sure if I should believe it to be good or not.  The last thing I needed after a long drive back from one valley to the next is to have another “talk” in *that* tone of hate, disgust and disappointment.

I guess I should back track at this point.  The day before, Wednesday, it was written on my calendar that I should put her name in the temple for prayers.  They rotate out the names ever two weeks so I call and put her name back in.  I didn’t want to.  I fought with myself because of the way she still talked to me after we had our fight over Sammy and the lock on my door, which in her mind was the greatest betrayal I could have ever perpetrated against her.  She doesn’t have boundaries, so no one can have boundaries.  I asked her a few days after the bird was moved to my sisters if she would ever like me again, she told me it still remains to be seen.  And from that point on she has tolerated me, sniped at me every chance she got.  I remained happy and chipper and trying me best not to flinch at her tone.  There is some sort of dark hollowness that you feel when your mother treats you like you are the worst person in the whole universe.  Needless to say, I didn’t want to, I didn’t think she should have it because of the way she treated me on a regular basis the anger started to push everything else aside to pour salt in my wounds.  I had to stop, redirect the anger out some sort of internal overflow spigot and rethink my position.  She can treat me how she wants to treat me, I can’t do anything about that other than not let her hurt me but I made the decision not to let her behavior dictate my actions so I put her name, a friends name and my name in the temple.  (who couldn’t use extra prayers)

Okay, back to last Thursday….

She apologized, she was terribly sincere.  She wanted me to know that she loved me, appreciated me and was truly proud of what I have accomplished in my life.  She didn’t relent and let Sammy back in the house but the air purifiers haven’t come in by that time, so hope still spring eternal on that front.  The other portion of this was she realized she can’t keep trying to make me secure a happy end of life for her.  She has to make that choice, and she has to make the efforts to do so.  Now THAT is a miracle and a milestone for her.

My milestone is unemployment….again.  Only this time I have a plan, I have hope and faith and determination to make it worth while.  I also have someone to take care of Mom during the day so I’m not the only one with her.  I’m going back to my post The End Is Nigh…..Or Not.  Mom is afraid of dying alone, without someone who loves her there for her.  She’s having more and more problems in the night sleeping, or rather breathing well enough to stay asleep.  I’m thinking during this time I will do more watching at night, so if she needs me, I’ll be there and then sleep while the other caregiver is there with her.  I do want Mom to have a good end of life, I don’t want her to be alone, that said, I don’t want her to do it during the holiday season.  My father died on Fathers Day, and now I associate both days….actual death date and the holiday….with him.  I can live without two death dates for her as well.

It’s amazing what happens when you walk in faith and hope for the best by letting go and letting God.

The Bluffers Rebuff

I miss Sammy.  I miss the way she says ‘Hello’ in the morning, or says “By by” when I leave but mostly I miss knowing there is one living, breathing person* in the house that loves me unconditionally even when she bites me.

Mom and I have plastered over the dings in each others walls, though I didn’t hurl anything heavy, she took asserting my boundaries as a direct hit and then taking Sammy away so she wouldn’t breathe in her feathers as a killing blow.  Covering the wounds works like turning off the lights instead of doing the dishes….if you can’t see it, it never happened.  I was told that I was breaking a dying woman’s heart by taking Sammy to my sisters, but if Mom truly is allergic to her feathers then taking Sammy out of the house was the only recourse.  It’s not like I would allow her to live outside even if she could.  It is still seen as an intentional, malicious action against my mother, which was not my intent, and I tell her I don’t intend on having Sammy stay away forever.  I’ve ordered air filters/purifiers/cleaners for her room and the family room and once she can breathe okay I will bring Sammy home as a test.  Mom on the other hand feels she will never be able to be in the same room with her again.  It is her way of bluffing my bluff, to see who could last the longest without her.  Well, not to be too macabre or put too fine a point on it, I’m the one that can live longer without her.  That’s not why I’m not going to buckle to her will, or maybe it is, I dunno sometimes what is going on in my head.  In a lot of ways I’m still very angry at my mom for the way she treated me, talked to me, acted towards me, and yet knowing that it’s coming from a place of fear and her interpretation of everything as pain she doesn’t know (or want to know) any better.  I can’t change her, I can only change myself so she can no longer hurt me.  But she made me cry this weekend, and honestly that seems to be the worst thing that she could have done.  That was the start of her treating me better, she thinks she broke me.  What happened was I didn’t have all of my social meds for the day and I crumbled a little but she’s taking it as a victory.

To help me overcome my loneliness and the fun in watching her, I bought a wifi camera that will allow me to log into it and I can watch her all day if I wanted to.  I won’t, hopefully.  But when I’m at home and in my room I can put it on my 24″ monitor and it would be like she was in my room with me.  It just can’t get here fast enough!

*Sammy is a feathered person….and yes, I’m one of ‘those’ pet owners.

Not My Circus, Not My Monkeys.

Mom and I hit the rocks, then the reef, then the iceberg over the weekend.  One realization that came from it was startling, sorta dream-crushing and it needs to go through the journal process before I can share coherently.  Sorry.  The other realization is that I can’t make my mother have a happy end of life.  I can’t do it for her, I can’t ease her from her dystopian state into the station where she believes she belongs.  It’s not my job to make those choices for her.  It’s like trying to have a pet polar bear in Phoenix, just isn’t going to end well.  I will be there to help her with her choices, of course, but I’m no longer going to foist them on her.

The fight was bad, things were said, apology made but we’re still dancing around each other not sure when the other one is going to launch the next salvo of words to try and destroy the other.  Neither of us willing to admit we love the other, and there are moments when she talks to me and I wonder if I still do.  I guess I do, I haven’t called the Shady Pines to come and take her away.  She hasn’t called the police to report me for elder abuse, so I guess we are still on an even keel.

What I don’t really like about myself in this fight is the war in my head of how to behave.  I don’t want to be mean to her, yet I think bad things, and wish I had the wherewithal to do what I imagine.  I get too much pleasure out of calling her bluff and watch her try and squirm away from the consequences.  For example she believes I don’t love her because I won’t dust my room or clean the birds cage on a more regular basis because of her allergies.  So, I’m sending Sammy away to my sisters to live for a while.  My reasoning is two fold, I want the feathers that stay aloft in the air for hours, the one she breathes in, to settle down and to see how well she improves and to, mostly, call her bluff.  I won’t let her use my parrot as a wrench in her manipulation toolbox.

It’s those words, the mean words, that I want to get away from.  I know I’m angry right now and I’m working hard to keep my head from swimming in the anger and frustration.  When I start getting angry I start deep breathing and chanting in my head, but that’s ameliorating the symptoms, not ripping out the foundation of them so I can build anew.  I’m at a loss of how to do this though.  How do you plug the holes and snip off the pour spout of the venom in your brain in favor of peace, love, and …YIKES…I sound like a hippie!!  I don’t want to feel the bile bubble up or the desire for revenge or strut the I’ll-show-you posture any longer.  Part of me is hoping this declaration will be enough, that making the choice to do so will be all I need to do to become that loving, peaceful zen-like person…..I guess that is my circus and one of the many monkeys that are on my back.  Reality sucks, and it’s hard work.  Maybe I should rethink the hippie thing.

Once Bitten…..

There is a scripture that talks about a child being able to put his hand in the den of asps and not be harmed.  This of course is Isaiah divining the peaceable kingdom to come.  I know we aren’t living in the time of peace and harmony so why do I still stick my hand out to be bit every time I talk to Mom?  She is convinced that I truly do not earn my keep, at least not the $12.33 an hour I’m supposed to work for her.  I’m working from home today and she’s already planned blood draw and then her social worker is coming over which will more than use up the allotted time I’m supposed to work per day to “earn my money”  but it’s not cleaning house, it’s not doing her laundry, it’s not feeding her birds, it’s not slaving for her.  She wants unconditional love, unconditional devotion, and unconditional willingness to be kicked in the gut when she needs someone to hurt as much as she does so she has the illusion of control and doesn’t feel alone.  Where I want to hurt myself in those situations she wants to hurt other people.

I know that, I’ve know that she’s angry and scared and is having problems adjusting to the inevitable.  I know this then why is it it hurts and tears at me when she says things like “Well, it’s not like you’re earning your money.  I could probably cut your hours back so K can work full time”.  I know she needs and wants to keep me on “the payroll” because she’s afraid that if I didn’t need my medical so desperately, I would quit her and leave her alone to die.  I think that’s what she has always expected her whole life, that she would die alone because her family doesn’t love her, that she is unlovable.  She’s convinced herself her parents and siblings hated her, and if even half of what she has told me is true, it is probably the root cause of all this, her husbands have abused her, cheated on her (or so her expanding memory keeps telling her), her grandkids (except for one) hate her and she doesn’t know why, I’m only here for the money and benefits.  I can’t seem to change her mind on that.

The bright side to all of this is the medications are working.  I know they are because I’m not ranting about her, knowing that if I keep going on and on about how I do my job would send me into an emotional maelstrom and I would dwell on it for hours if not days.  I might still pick it up from time to try to figure out what do but I’m able to divert my thoughts when I realize I’m starting to spin before I’m out of control.  Amazing what happens when you take your pills every day.

The angry person that I am wants to tell her what she can do with her $12.33 and comprehensive benefits and put them somewhere the sun doesn’t shine.  But honestly I couldn’t afford to pay for COBRA and also lose the pittance of a paycheck that I get from my second job.  Heaven knows I’m not able to afford everything else with my first job.  Pushing the anger aside I’ve been able to think clearly enough and realize that going without medical is no longer an option in the US, and ways have been provided to help those of us who can’t make their ends meet.  So, what this means to me is that I don’t have to work for her any more, I can be her daughter, do what I am emotionally and physically able to do for her and take back the control I need for my own sanity.  I know, I know, control is an illusion, no one has control.  Despite that, I need to protect myself as much as possible as she starts to deal with her own end-of-life issues I want to be there with her and I want to help her and prepare her but not at the expense of my own sanity.  If anyone is going to drive me over the crazy cliff it will be me.  I am the mistress of my own fate.

So this gives me a whole new list of things to do:

  1. Contact Covered California for help in figuring out the system (done)
  2. Get the cost of COBRA
  3. Sign up for VHP but not on Medi-Cal.
    • Medi-Cal patients are treated differently than VHP participants.
  4. Assign my hours over to K and then quit my job as Mom’s “caregiver” and then start taking care of her as her daughter.

I doubt she’ll stop trying to hurt me, but at least she might have to think twice because I’m not getting paid to be her personal walking and talking Damnit Doll.

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