No, you’re not crazy.

Well, maybe you are.  But since care giving puts a whuppin’ on body, heart and mind over time there’s no surprise that our lives reflect the damage.

I’m currently reading Being Mortal but Atul Gawande.  The author is a surgeon who also writes outstanding prose that invites the lay person to look at medical issues and medical professionals to look at the human impact of their work.

Yesterday, I read his description of an adult daughter caring for her father,

Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial… The burdens for today’s caregiver have actually increased from what they would have been a century ago.  Shelley had become a round-the-clock concierge/chauffeur/schedule manager/medication-and-technology troubleshooter, in addition to cook/maid/attendant, not to mention income earner.  Last minute cancellations by health aides and changes in medical appointments played havoc with her performance at work, and everything played havoc with her emotions at home… 

She felt her sanity slipping.

Misery (or is it madness?) loves company, and I was reminded of what I wrote in the intro to Raising A Child With Autism,

Maybe you are an amateur trying to be caregiver, therapist, clinician, advocate, mommy, daddy and everything else to a loved one living with autism. You feel like a lone idiot with a leaky hose when the job needs a landscape company.

So if you’re out there feeling depressed, or enraged, or exhausted, or or or or… just repeat after Dr. Sheldon Cooper:

sheldon not crazy

Flashing before my eyes

Not my life, but my son’s life.  That’s what flashing before my eyes.

Today we have the meeting to set up his move to a group home.  All of the staff will be there, both the folks from his day program and from the house where he will live.

It’s a positive thing, of course, something for which we’ve (my wife and I) waited for a long time.

I can’t speak for her feelings, and I can only guess at our son’s, so I’ll shift to first person here.

I realize that my role in my son’s life is not over, but much of what I can do and shape is.  I’ve formed what I can in his life, second guessed myself to the point of agony, been critiqued and judged plenty from without, as well as encouraged and supported at precious points along the way.

I can look back on…

 

JOEY Yucaipa

 

…who Joey was…

 

 

Daves mom and joe

 

 

…who he’s become…

 

 

 

20170723_110957

 

 

…and ponder who he’ll be.

 

 

 

 

Something of me travels with him, of course.  And I pray that it is whatever is true, whatever is honourable, whatever is just, whatever is pure, whatever is pleasing, whatever is commendable (Philippians 4:8).  God knows and every day reminds me that there’s plenty of me that needs to be ignored and forgotten, and I can only pray that little of that drags along with Joey.

So a new leg of the journey commences, over territory we’ve not been and over which we’ll have ever diminishing control.  But ain’t that life.

An old priest I knew always included a warning in his message at the baptism of a child.  You (parents) know that you’re handing your child over to God now.  You’re no longer in charge of the outcomes.

As my life flashes before my eyes, and Joey’s plays across my imagination, I’ll trust that warning, and know that all of our lives are in the hands of the One who’s cared for us beyond all deserving.

 They will declare,  “The Lord is just!  He is my rock!  There is no evil in him!”  (Psalm 92:15, NLT)

Medical Meet & Greet

I need you to soothe my head
Turn my blue heart to red
(the late Robert Palmer. More later)

Our allies in care giving are precious. The folks who coordinate and provide services to our son with autism (Allies! Yay!) were quite helpful with recommendations for a new primary physician (Allies!  Yay!) to see our guy. I want to distill some of that experience in ways that I hope will be useful.

  • Let the person in your care help direct the search.  Note his/her day to day preferences.  Is your loved one more comfortable with men or women?  Younger or older adults?  Will the distance to the doctor matter – how does the person in your care tolerate travel?  Any and all subjective impressions can help you seek out the right doctor.
  • Know your needs.  We wanted a younger doctor who with potential to take care of our son for years to come.  We wanted a practice where every appointment would be with that actual doctor, not a Physician’s Assistant. (That’s not a knock on PAs, it’s just that our son does better with familiar people rather than serial strangers).
  • Ask around.  We do it all the time for all kinds of goods and services, so ask for recommendations.  We made an appointment to meet a particular doctor based on recommendations from professional staff we trust.  Friends who are caregivers can give you good insights from their experiences, too.  (You can tell I’m an aging caregiver.  I prefer old school “human intelligence” gathering to online stuff like Yelp.  I want to know the source of a review or recommendation, and I’ve had professional friends burned by crummy reviews made up by crummy people.)
  • Schedule a meet & greet.  Start building a relationship before there’s an emergency or acute problem.  We made an appointment for our son just to meet the new doctor.  I don’t want to be flippant about this.  I realize that for some of you, insurance issues might inhibit you from making appointments of this sort, especially if you are going to check out more than one doctor.  Our son’s disability coverage made this doable for us.
  • Ask questions and share info.  Don’t consider any question rude or stupid, or any anecdote about the person in your care to be trivial.  My wife was clear about our son’s resistance, up to and including violence, to short tempered people or while in a post-seizure state, and she asked the doctor about his ability to remain calm and patient.
  • Observe.  The person in your care needs to be at the meet and greet.  You will sense dynamics with the service provider right away.  The new doctor did the normal stethoscope thingy on our son’s back and chest.  Our son pushed the stethoscope away – but with a big smile.  That is our son’s way of bonding.  He goofs on people he likes.  He wasn’t pushing it away in discomfort or anger, but in order to establish a kind of play time with the doctor.  This was a good sign.

I hope some of this is helpful.  There’s the saying about “being your own advocate” when interacting with the medical world.  Caregivers need to practice that for those in our care as well.

OK, I said I’d get back to Robert Palmer. Here’s your dose of 70s music: