Tuesday, January 21, 2014

Sweetly Salvaging ~ For The Love Of Home ~ The Image-less Post

DISCLAIMER... LONG, RANTING VENT POST AHEAD WITH NO PRETTY PICTURES!!!  BUT ITS STILL CHEAPER THAN THERAPY!  So... I only expect the die-hard Storyline Supporters to wade thru this and it's more for ME than anyone else really!?  *Winks*
Well, Blogger still isn't allowing me to load Images at all as I write this, so I'll just start with the Storyline of the Post and see what happens later as far as adding Beautiful Images from the Event?  Otherwise, this will be the first Image-less Post on my Blog!  *Gasp!!! Heaven Forbid, right!?!?!*  I now realize, I have way too much to say and Share so I'm going thru intense Blogger Withdrawal!  *Winks*
  You see, I NEED to have some Blog Therapy right about now and I almost Titled this Post something entirely different, but when I thought about it, the Love of Home and Family IS what has been my Primary Life Focus, so it is an appropriate Title actually.
Keeping my Home and Family Together in spite of all the Madness and Medical Issues plaguing the members I'm Caregiving for has been a Tall Order though and I have no delusions about being overwhelmed and under resourced for doing it.  There are days when it would be easier to throw in the towel, if only I could FIND the towel... yeah, that's how out of order my housekeeping has become!  A Team of Merry Maids would be daunted by all the things that need to still be done!
Not that Resources haven't suddenly been made more available mind you, since my Breaking Point Episode back in October... but that too creates some Challenging dynamics and I'll tell you why.  I'm Grateful that they're finally sending Medical Staff to our Home to help with The Man's Medical Care and Needs so that I don't have to try to drag him around and transport him to a slew of Appointments almost daily.... BUT...   

Part of the Solution can also become part of the Problem... in that it also means that on any given day there are one to four different Home Visits from an Occupational Therapist, Speech Therapist, Physical Therapist, Home Nurse or Evaluation Team Member.  *Whew!* 

 And that also makes me constantly Feel like my Caregiving and Housekeeping is under a Microscope and INTENSE Scrutiny with constant 'Constructive Criticism' by various Agency Reps.  There's always loads of  'Suggestions' for The Man's Needs, but only little ole' me to try to Implement them all some kinda way and still meet the rest of us at our Point of Need and make a House a Home for all of us, and AS IF I NEED even MORE to do!  *Ahem!* 

 It's not AS IF they're willing to pony up the Fifteen Thousand Plus dollars a Month it would cost them to hire Paid Caregivers to replace me anyway... but I'd be willing to pass the baton if they think my Unpaid Caregiving isn't up to their Standards 'cause I'm Tired, completely Overwhelmed and could certainly use the Break anytime.  I can't recall the last time I had a full Night's uninterrupted Sleep at Home in over Thirty Years actually of caring for someone with Medical Issues or Special Needes... so I'm overdue, though I have found I need far less Sleep than the Average person now with all this Practice and Experience. 
It's a full time Job just fitting in all those Home Visits around Doctor and Therapist Appointments for not only him, but the G-Kid Force's Medical needs as well, and is frankly a Logistic's Nightmare and quite exhausting.  The Calendar is so packed with Medical Scheduling for them all... either for Home Visits, Consultations or Away Visits, that I often don't know if I'm coming or going!  And... um, WHO are we seeing Today, for WHOM and WHY?  I barely remember and it's all becoming a blur... even when I'm staring blankly at a Calendar so overloaded with their Medical and/or Agency Scheduling, that making Sense of it is like reading Ancient Hyrogliphics and keeping on Track is akin to Caregiver Olympics which is wearing and Stressing me out again already
And Forget About the Alleged VA Respite Caregiver I'm supposed to receive and find Time to squeeze into the hectic Schedule for myself... because there are so many Conditions attached to that twelve hours a Month of Services that it has been virtually impossible to meet the Criteria for her Time here to Relieve me and Allegedly provide some Respite to this Madness. 
You see, the G-Kid Force are a disqualifying factor... so if they're on School Breaks I can't Schedule my Respite Caregiver anyway... so for the two weeks they were on Winter Break recently... no can do.   If they happen to come down Sick, either physically or emotionally, which is often and unpredicatable, I have to Cancel Respite Care.  If they're Home at all I can't Schedule her actually.   She is allowed to Assist with some light Home duties to Relieve me of the burden of doing it all.  But it can't involve anything but what The Veteran and his Spouse needs, not the entire Family... nothing to do with the Kids.
So... she COULD help me with some laundry... but only our laundry... and though I sort Colors, I don't sort by Family Member.  Maybe I should, but if I've got to go to the Laundromat anyway to do hours of their laundry, it just seems silly and redundant to leave our paltry pile of laundry behind for the Respite Caregiver to help with.  Because I'm not REALLY getting a Laundry Respite and I'll still have a sh--load of laundry to do regardless. 

She COULD help with light housekeeping... but most of the damage control having to be run around here is G-Kid Related and not Veteran Related... The Man really isn't messy and he really doesn't do much anymore to make a mess anyway like Children.  I could easily keep things in Order if it were just he and I... but it's NOT.  Training The G-Force to behave Normally and be semi-organized and task-oriented is still a Work In Progress with loads of Intensive Therapy and Meds behind it.
She COULD help with some light meals for The Man and Assistance he really needs doing daily tasks... only the ONE TIME she was here, he wouldn't eat for her or even let her Assist him, too Stubborn, Ornery and Proud.  *Le Sigh*  In fact, the ONE TIME she was here, he stayed in bed almost the entire time and only made an Appearance just before I came Home, apparently so I'd Assume he was on board for this Service, and even though she was a very nice Young Woman quite willing and able to Help in the Realm of what she's Allowed and Hired to do for us.  So we could hardly fill out the required Government form of what she'd done for him, except maybe make sure he didn't die in his sleep on her watch.  *LOL* 
And I'm not really certain, until I call for the Service again now that the Kiddos are back in School, if she can be a Stand In for me when the never ending Home Visits take place?  So that I can actually use the Respite Service again or even at all... and receive my mere twelve hours, regardless that just about every day mid-week has someone else coming for Home Care Visits... and that Weekends are off the table coz The G-Force would be Home? 

 And it's That Season again... so the Kiddos have been Home Sick more than they've been in School lately, a steady and constant rotation of them catching something and 'Sharing' it... or having Mental Health Breaks that preclude being able to Educate them effectively.  Prince R had to be picked up This Morning from the School Nurse, so he lasted barely an Hour after the long Holiday was over. 

And Princess T has been having major Anxiety Attacks and Mood Swings for days now, due to Grandpa's declining and Fragile Health, which justifyably scares her and makes her Act Up and Act Out as her Coping Mechanism.  She's Terrified he'll have to go Live at the Hospital again... and so is he frankly, so he hesitates to be Truthful to his Home Care Team.. and sometimes even to me, knowing they have to Write Up any Concerns and I'm Obligated to tell them of any Issues I'm Aware of.
I'm also working on finding another Surgeon that will perform Princess T's necessary Surgery without having Custodial Arrangement Issues that would force us thru the prohibitive expense and wasted time of going thru Family Court again?  With the help of her Regular Pediatrician and Pulmonology Specialist, who are requesting another Referral because they are in Agreement it's ridiculous not to Honor me as the legit uncontested Guardian, since we have Raised them both since Birth, made ALL Medical decisions for over 13 years now... and have Insurance to get it done. Not to mention that the delay is causing suffering and further Medical Crisis for the Child.  They can't even do the Pathology on the tumor until it's OUT... and what if prolonged delay is a Game Changer on Treatment and Well-Being? 
 Yeah, we haven't been able to put that 'Issue' to bed either with the Alleged 'Expired' uncontested and Voluntary Guardianship dog and pony show and it's making me a nervous wreck.  Not AS IF any Alleged Guardianship Expiration means anyone is gonna come pick these Kiddos up and Raise them instead while providing 100% of their Financial Support 'til they're 18 mind you, so it's all just Bureaucracy and Bullsh-- at it's best.  Custodial G-Parents really still get the Shaft for doing the Right Thing rather than the Easy Thing.  And Involuntary Placement is still more highly regarded than Voluntary Placement when Non-Custodial Parents do the RIGHT THING without being Forced to by a Court and Law Enforcement!  It's Crazier and more messed up than they Allege our Daughter is actually... she was able to make Saner decisions than The System for their Well-Being!
   I'm Wondering however, just WHO I can get to provide Caregiving for The Man and The G-Son while I'm with her in the Hospital when that time finally comes?   Since I haven't been able to find a way to be two places at once yet... and The Son and his Girl can't take any more time off Work to fill in for me since they both have new jobs and live clear across the Valley anyway and have three Kids to juggle and Care for already.
And speaking of the G-Son, I've had Good News and Bad News with him lately too.  Bad News first just to get it out of the way... he's on thin ice at the Boys And Girls Club because they're having difficulty dealing with his 'Issues', ie: Mental Health and Socialization being below par.   He will probably get kicked out by the Director eventually, the Awesome Teen Mentor, Bless his Heart, hasn't given up on him tho' and is the only reason he's still Welcome to go at all right now.   Well, it's not the first Youth Program he's been deep sixed from for being unwilling or unable to Conform, but we are running out of Respite Programs he Qualifies for, is Welcome being him at and Enjoys spending Time at because it Enriches him and gives me a break from him. 
The Good News is Awesome tho'... and answer to prolonged Prayer... God after all is right on Time!  I've been Praying for that Perfect Mentor and Program who Accepts The G-Son for who he is unconditonally and isn't trying to 'fix' him, because frankly, he isn't broken... he's just differently Gifted and Divinely Endowed in his own peculiar way.   There is this Art and Science Center Ministry within walking distance from our Home, Founded by two Brilliant Professors.   The Young Prince is really into Science and Art so he Loves going there and kept coming Home with almost unbelievable Stories about how Jazzed and Excited the Professors were with him.
Okay, so I Believe my Grandson is Brilliant and exceedingly Gifted, but most Educators have never been able to Reach, Stimulate or Educate him and I know a little bit of him can go a long way.  So, after a time most folks can't Cope and frankly don't want to either if they don't have to, even if they were Great out the Gate and had the best of Intentions.  So I was Guardedly Optomistic about his Stories, since I don't wanna get my Hopes up again only to have them dashed when a little bit of him goes a long way with some Mentor or Teacher and they finally Give Up, Give In or Give Out like all the others before them. 
 I was just Happy he was Welcome there to do his 'Thing' with Art and Science so that he could be Academically fed and Stimulated in a Positive Way and feel Okay just being himself and have somewhere to go that he Enjoys... and meets him at his Point of Need beyond what I provide for him at Home.  Since I know the Kid is hungry and thirsty for knowledge beyond what I can provide, he just checks out in School and fails everything in spite of Testing at Genius level... go figure.  No, I don't have the Answers so I just Advocate for him blindly really based on Faith and Love that it will somehow be Okay in The End... and if it's not Okay, then it's not The End.   That Worked with The Son, so I already have a Strong Testimony in spite of naysayers of Kiddos with Extreme Special Needs turning out Okay and even being a Success Story Poster Child.
So, anyway, this is where the Good News gets even Better.  The Professors ask for a Meeting... now normally that wouldn't be Good News for me since Meetings and my Grandchildren typically mean Bad News is coming and I'm being Reminded of how 'Special' they really are, and not in a good way.  *Smiles*   But The Young Prince tells me they want to validate everything he's been tellling me and talk about The Plan... Wow, we have a Plan, Excellent!!!  So I go to this Meeting, Guardedly Optomistic as usual... and these Professors tell me their background {VERY Impressive by the way} and verify everything Prince R has already told me that I thought was probably part Fantasy and Wishful Thinking on his part!!!   Good, I don't have to Patronize him, because he typically sees right thru that anyway.  *Winks*
They show me some of the things Prince R has already Invented... and some of the Computer Programs he's already designed and set up for them... and  how they've Challenged him even more because though entirely Self-Taught, they Believe him to be not only the Smartest Kid, but the smartest Human Being they've ever met!!!  *Blink Blink... yeah, they actually said that!  WOW!*   One of the Professors actually designed and helped build the Arizona Science Center and has an Impressive Resume' in Architecture, Inventing and Computer Programming... he's been doing it all for over Thirty Years and told me that my Grandson has surpassed some of his own knowledge, so it has blown him away that a Kid is this Smart and Naturally Gifted without being Coached by anyone!  And barely Encouraged or even Tolerated by most Educators up to now, that typically just end up viewing him as a Problem Child.
They wanted me to be Okay with Prince R receiving a High Tech Computer Equipment for all that he has done and is doing on behalf of the Center as a Volunteer... because though he initially came as a Student, he has brought enough to the table to be considered a valuable Asset to the Center!  Prince R Loves to Mentor the other Children, Invent things for the Center and Build Programs for the Center to use.   The Professors want to help us Enroll him in High School for the Ace One Program during his Sophomore Year, which will provide Free College and earning of Degrees while he's also taking his High School Classes, if he Qualifies. *Fingers Crossed!* 
I have been sweating High School Enrollment for the Young Prince only because Jr. High has been so dismal a failure for him and I'm sick to death of being told Bad News about him almost every day by Educators and Administrators.   I often Wonder if they also tell the Physically Handicapped Kid's Parents or Guardians that their Kid is still Physically Handicapped every day?  Or the Retarded Kid's Parents or Guardians that their Kid is still Retarded every day?  
Of coarse they don't, I'm being facetious and just making my Point, but that's how I FEEL every time I'm reminded by an Educator or a School Panel that my Grandson is STILL Mentally Ill and behaves like he is.   Yeah, we know... he was Mentally Ill yesterday, today and probably tomorrow and beyond... we don't need Reminders thrown up in our Faces all the time, we Get It and Live It daily.  He's a Beautiful Mind... wrapped up in a Tormented Soul and Normal Looking Body... doing Life that way... it is how it is.   There is only Mainstream or Special Ed and he doesn't belong in either group really... but they have no group or Specially Funded Resources for the Brilliantly Gifted yet Mentally Ill Kids.
I actually get Envious when I see the Resources the Special Ed Kids and their Families receive in Public Schools, only because I'd like at least that much designated for my Special Needs Kiddos.  But they don't Qualify because their Diagnosis and Disability Status is still that Gray Area, just like it was for their Mother and Uncle, some things remain the same and haven't had Positive Change. 
 Maybe some day the Mentally Ill, and especially the High Functional folks with Mental Health Issues, will receive the same consideration as they're being Educated.  And more Social Compassion and Tolerance.   Just keeping it Real, it's very frustrating for Families and the Afflicted... we have no Magic Wands or Answers either... but the burden of the Bad News during the School Years keeps coming and threatens to bury you.  So it was refreshing to have Good News for a change and a Ray of Hope extended... I'll take that Hope and run with it!   Yes, I'm Sweetly Salvaging what we can for the Love of Home AND Family out of this Hot Mess that is Mi Vida Loca... and a Good Blog Rant always makes me Feel somewhat Better to just get it all off my chest and Released into the Universe where it can float around indefinitely for all I care, so long as its OFF ME!  *Winks*
Blessings from the Arizona Desert... Dawn... The Bohemian


  1. So glad you have some silver linings in the dark clouds Dawn! I have a son who is also mentally ill and has also gone through the same rack, tho we haven't yet found our silver lining. I completely relate to everything you have said. Over here in old Albion the conservative government are now making it more difficult to get help for the mentally disabled financially and otherwise and sometimes i can't see the light at the end of the long dark tunnel. xxxxxxx

  2. So happy for your very positive news on your grandson! You do so very well to keep your sanity with all the turmoil around you! We care for a great grandson while Momma works and my husband is battling an illness, and I think that is too much at times! Hope your problem with getting pictures on your blog is settled soon! I really enjoy your photography too! Blessings on you and yours!

  3. Aha. The G-son has been discovered by advocates with resources! Which makes me wonder...

    Once upon a time, a classmate of mine planning a career in special-needs education was thrilled to discover a notice on a laundromat bulletin board, pleading for a once-a-week sitter for several very young, very special kids. It was a match that worked long enough to help the family attend an older child's ball games, and long enough to add a valuable reference to the sitter's resume.

    Would a similar arrangement be possible in your situation, Dawn? Are you located in close enough proximity to a university that offers degrees in pediatric mental health or special education? And have you considered contacting the local Mensa chapter? Believe me, the folks belonging to this high-IQ society have encountered "brilliant minds with tortured souls" coping with mental illness (all too often with self-medication). Perhaps the prince might find a sponsor with whom to share an afternoon -- preferably the same afternoon the princess works on a project with a student, and The Man watches a football game while the helper doodles notes, and you escape to respite?

    You're seeking rays of light: wish I could offer more than a flashlight with weak batteries.

    You're seeking rays of hope, Dawn, and I wish I could

  4. Dear Dawn,
    As you know I found your blog through Suziqu's Threadworks I began reading and found the picture I ask you about. By the time I found the pic I had been reading long enough that I was hooked. Now, I read everyday.
    This post I found amazing.
    I have always been told that God doesn't give us more than we can handle. I think your post proves that to be true.You have so much to deal with on a daily basis. Great challenges. I am awed at the trust God has put in you.
    The news about the prince being recognized so positively for his capabilities is wonderful. I can only imagine how this will increase his feelings of self worth and yours of gratification for believing in him.
    Sometimes the light at the end of the tunnel seems so far and so dim and you have my respect for continuing toward it no matter what.
    When my mother had her stroke I took care of her at home and I had just had my seventh child. People said they didn't know how I did it. It wasn't anywhere near the challenges you face and have been facing for so long.
    I really liked the suggestions in the reply just ahead of mine. I hope you are able to find some regular respite and a few glorious hours to regroup and pamper yourself.


A life touched by God always ends in touching others. - Erwin McManus

I will love the light for it shows me the way, yet I will endure the darkness for it shows me the stars. - Og Mandino (1923-1996)

For creativity to flourish one should try to look at everything as though it were being seen for the first or the last time. - Quote from "A Thousand Paths To Creativity" by David Baird

Is what I'm about to say an improvement on silence? ~ Galen Pearl