Friday, March 2, 2018

Let Us Now Return To Our Regular Scheduled Programming

Things have Calmed way down to our 'Normal' again, which is a huge relief that this Episode resolved itself rather expediently.  In fact, I do believe it scared all three of the participants that their individual roles in it caused things to go so sideways.   That is a Good Thing, that Awareness of one's Role in a bad situation playing out, it lays fertile groundwork for me, the Caregiver, to discuss what each of them could do Better next time for a more Positive outcome?  Once Calmer everyone could eventually have that Conversation with me without Feeling defensive or upset anymore and accepting a measure of responsibility.

Awareness was not always something each, or any, of them previously had in their Journey thru Living with their particular Disabilities.  It's still a Process for each of them, with some doing better than others, but if each does their Best and their Part, it can diffuse a lot of potential Episodes becoming Epic.  I am Thankful that each of the Loved Ones in my Care is capable of a measure of Progress and Success, some Caregivers are not so fortunate to see improvements in a Positive direction.  When only the Negative direction is evident it can seem rather Hopeless, so I am not without Hope.

That is Huge because having Hope, even if you find it extremely challenging to receive adequate Help, can promote Positive enough Changes in you so that those you Care for are responsive to that Energy being present in the Home.  It can be difficult to keep a Positive Energy present when a lot of Negative things can, and often do, just play out in Real Time and at any given time, but you must.  You will have those times of feeling overwhelmed by the responsibilities of unskilled Caregiving though.  I say unskilled because no matter how long you've been doing it, the skills necessary are ever constantly Changing depending upon the overall condition of those you're Caring for.

If you have lived with someone and done Life with them daily who have Serious Chronic Illness or a Lifetime Disability you know that Changes in overall condition can fluctuate, even day to day... or moment to moment.  This is often why you have difficulty receiving adequate Help for Respite Care or affording it even if you can find it.   Even when I 'qualified' for marginal amounts of Respite Care it had so many 'conditions' attached to the 'qualifying factors' that we often couldn't meet them all.   What I could receive for The Man was 'disqualified' by the fact I also had the Special Needs Grandchildren.   What I could receive for the Special Needs Grandchildren was 'disqualified' by the fact I also had a Vulnerable Adult in my Care.  It is no Respite at all if it doesn't include ALL.


My Creative Solution to this dilemma, years ago, which took a lot of hard Work on everyone's part, was to begin Training each of them in how to be a lot more semi-independent to where I didn't require a fill-in all of the time.   You cannot be Present twenty-four-seven and three-hundred-sixty-five anyway, no Human Being can do Life with those Scheduled Hours of Caregiving and absolutely no breaks!   You would also be hard pressed to run and manage a household, unless you had Runners and Hired Help to do everything else such as Shopping for daily Supplies, tho' Online Services do Help nowadays to Deliver what you cannot go out to get.  But a lot of that doesn't come Cheaply either and as an unpaid Caregiver, that is Important.

Very few, if any, Caregivers I know of are Salaried if it is their Loved Ones they're Caring for.   It's not a paying gig and if you do finally 'qualify' for some stipends or Services, they are 'conditional' as well and monitored regularly to assess whether or not you still 'need' them or 'qualify' for them.  It's all rather a convoluted Process you cannot become dependent upon, even if you once received any or Luck Out and have received some for more than a Minute.  Even just 'qualifying' for what Medical Services or Specialized Equipment your Loved Ones should receive for Quality of Life or just staying Alive isn't just as easy as NEEDING it desperately you see.  If someone has never been a full time Caregiver or Custodial Grandparent or other Relative raising Children that you 'inherited' you might not realize that critical fact.  It's all hard Won if you are Victorious in your Fight for any of it actually.

So if you can Creatively find ways to figure things out to where you're not dependent upon what might not be or isn't coming your way, you're much better off in my humble opinion.   Necessity is after all the Mother of Invention and the Human Spirit is pretty strong, so you're often more resourceful and stronger than you might think you'd be, when you just have to be.   It is Good to have a Network of at least Emotional and Social Support tho', which is why the transition to Rural Living and a less Supportive Community has been particularly difficult for us.  Everything here in the way of what could be a Respite is so much further away and the Community is not a Supportive one towards anyone.  Mebbe it's just too New, or too preoccupied with Self, I'm just not sure of the reasons it is as it just is.

I do Wish that Social Services and the Adoption Court Process had recognized that the trappings of an affluent Neighborhood do not necessarily translate better than a Poor one to 'suitability' for the Adopted Child.   Where the Community Support was better even if the living conditions seem 'substandard', as they put it, in regards to Old Bohemian Valhalla.   In hindsight, tho' the protracted three years of trying to Win the Right to Adopt my Grandchildren had taken it's toll on me, perhaps I should have just fought harder to stay put and hold my ground.  To not cave in and just play The Game to meet 'The System's' idea and lofty Standards of what would be the best and most suitable living conditions and arrangement for us as a Family.   Moving On Up has not been 'All That', we're not suitably impressed and it's not the Illusion it was on the surface.  It's made our lives harder and much more expensive.

I've been more than a little bitter about that actually, our situation was already complex enough and complicating it further just added stresses I didn't really Need.   But I did Need to keep my Family together and not allow Strangers with good Intentions to presume to know what would be best for Children I'd already raised for 15 and 10 years and they only met with on their Caseworker Caseloads.   With numerous rotations of Caseworkers I might add since the Good ones rarely last and the incompetent ones you Hope don't last!   I was going to say or get transferred to other Cases, but I wouldn't Wish that upon any other Family in The System.   I am Thankful to finally be freed from the confines and constraints of The System... somewhat... since I do still have to fill out Post Adoption Forms to receive basic Services for the Children that I could never afford out of pocket and Adoption Court does graciously provide for those who Adopt the Special Needs Hard To Place Child.

I Share most of this back story so that those who've never navigated The System in place will understand why so many of us in Caregiving Land are hesitant to ask for assistance or Services, no matter how much easier it might make Life IF you can receive any and jump thru all the necessary Hoops.  To whom anything is Given, well, MUCH is required and it can be such a draining, exhaustive, anger induced, humiliating and convoluted Process... and what Caregiver even has Time or endurance for all of that added onto what they're already shouldering!?   I know I don't, when I absolutely HAD to, I did if there was no Choice at all, but if I can avoid it and not HAVE to, forget about it! {Said in my best Sopranos impersonation voice.}   If things Worked I'd Work it so to speak, but Experience has taught me well what I'd rather not Deal with on top of what I HAVE to Deal with daily anyway.

For my Loved Ones, and because of their particular Disabilities and Social Anxieties, not having to Deal with a posse of Strangers coming into the Home has been a Huge relief to them.  It used to make them very Anxious, Upset, Resistant and Fearful when random people Assigned to us had to become a part of their Lives for any reason.   The transition of acceptance of a random person they did not know and who might not even last until the next one we could receive entered Stage Right and then departed Stage Left in short order was a real battle for me to run damage control behind as well.   It is disruptive to Routine to have too many invading the Sanctuary of Home, even if for Services that would or could be Helpful.  If you know anything about Serious Mental Illness and Traumatic Brain Injury, the Routine is paramount to those who suffer and any disruption of it can short circuit the whole Regular Scheduled Programming! 

Preparation for any break in Routine is something I have to ease them all into gently and far in advance so we can even have a relatively smooth transition of what they are to expect and Deal with or Cope.   The System I have in place right now Works for us almost all of the time.  That fateful day it did not Work so well, it happens... but it could happen regardless of what System was in place actually... Shit happens.   So we've just decided unanimously, as a Family, and after discussing any and all Options that might replace said System, let us now return to our Regular Scheduled Programming.   We talked individually and collectively about how they could do Better when faced with a disruption in The Force so to speak.   Having those Backup Plans of Action to make them each feel more confident they can manage during brief interludes when I'm not available or present made them feel a lot more comfortable I don't have to alter everything on the turn of a dime.

I'm actually Glad to return to our Regular Scheduled Programming and Comfort Zone, because the Alternatives were rather limited to say the least and were actually giving me Anxiety Attacks, which isn't Good.  In Unity we will move thru each Challenge as best we can and try not to have to add a bunch more people to the mix that might not be Helpful even if they show up.   Today was actually even a very Good Day as we slowly and methodically returned to our 'Normal' and it made everyone feel more Settled in their Spirits and Proud we made it thru a rather hairy Episode together as a Unified Front and as a Ride Or Die Family Unit.  I want to Thank everyone for their Concern, Emotional Support, Words of Comfort and Advice, Positive Energies extended towards us and Online Friendships, it means more than you could ever know to have this Wonderfully Connected Community here in the Land of Blog!   It makes me realize that whenever Real Life falls Short, just Blog!  *Winks*


Blessings from the Arizona Desert... Where Return to our Regularly Scheduled Programming is in Process... Dawn... The Bohemian


  1. Phew! Sometimes it is helpful to see how we affect others. It has taken me a while to get that.
    Nice if we can learn lessons from when life goes sideways! Hugs, Jazzy Jack

    1. Yes, the dynamics of every household are affected by how everyone interacts and what particular challenges that can present, especially if you have Loved Ones with challenges.

  2. Happy to hear things are returning to normal.

    1. It is a relief to have a semblance of normalcy within the Family Unit!


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