MORE read, discuss and do?

We recently shared an article on practical preparations for being a caregiver to an aging loved one.

What if very early diagnosis says that your newborn is living with autism?

New research suggests that autism can be detected in the first year of life by brain scan, rather than waiting on traditional behavior observations in the second year.  (Here’s a news summary of the scientific article).(Here’s a news summary of the scientific article).

A suggestion: if this pans out, absorb the early shock and then start setting up your support systems.  It is an early and useful opportunity to get your care giving resources and your life in position before the major behavioral issues emerge – while your child is still dependent like a typical baby.

Worth reading, discussing and doing

Forbes Magazine has a #LifeHacks piece called 4 Critical Things To Do Before Becoming A Caregiver.  It is concise – almost a simple checklist of ways to prepare “General, Legal, Medical and Financial” documents and plans before becoming a care giver to a family member.

Ideally, discussion and preparation should go on while the family is in good health.  Spouses should talk about plans as they age; extended families should talk things out with parents, grandparents or other aging loved ones.  Families like ours, engaged in long term care of a special needs child, need to get ahead of these matters as well.

Unfortunately, care giving falls into many lives without time to prepare, as the result of a catastrophic illness or accident.  This article will still serve as a valuable resource, even under difficult “catch up” conditions.

While the article does mention getting “Names and phone numbers of religious organization and points of contact,” we would amplify this to include discussion and documentation of funeral/burial wishes, whether religious or not.  Don’t underestimate the wear and tear on care givers and other survivors;

  • the unexpected cost of a funeral, often setting up stress between unexpected price and available budget, leading to guilt and family squabbling;
  • the bombardment of questions – “What music at the service?  Burial or cremation? Who is going to speak?” – that comes in right when survivors just want to be still, remember and grieve;
  • the challenge of providing an event for a large number of people, many of them strangers to the survivors, on short notice;
  • oh, so much more.

It is a great gift to the family to have talked out and written down the loved one’s wishes in advance.  Most funeral homes and many churches have worksheets that ask all of the relevant questions, and having these available at the time of death takes a great deal of strain off of those dealing with loss.

Inside out

I have to laugh at our family on this quiet Saturday morning.

We’ve had a couple of ER trips over the last two weeks, all of which we handled just fine.

Major crises become run of the mill in care giving families.

But little crap can set us off like 4th of July fireworks.

Joey’s birthday is coming up; Melissa got him to articulate a list of desired videos (video = present on Joey’s planet.)

So the other night, a healthy, happy Joey was musing about “Soon there will be presents” and then decided to offer a bit of theater expressing his desire for their arrival.  He went to the front door and knocked from the inside, a perfect tap tap tap simulating the arrival of a package via UPS or FedEx.

The knock awakened the aging dog and set her to barking up a storm.

This in turn rubbed Melissa’s and my last nerves raw and we broke all of the rules about calmly explaining things to a person with autism.  We went into full “Knock it off” mode.

This made Joey laugh – he finds anger amusing to a point and them absorbs and gives it back .  So he started knocking again and the dog started barking again and and and and and and and…

Here’s a video about knocking. I think the only pipe I’ll be hitting is the one with the crack in it.

…when such a thing happens…

Everyone reading this book – indeed, every human being – needs to know that when such a thing happens, we are not alone.  Victor Lee Austin, Losing Susan, Brazos Press 2016.

If you are a family care giver, or if you know one, Victor’s book (and it really turns out to be his late wife Susan’s book just as much) can be at once a splash of cold water that wakes you up and a strong arm around you for comfort.

20170206_141154He tells the story of his wife’s long terminal illness and his efforts to care for her with great love and humility in a pure sense of that word, by simply being objective and not forcing any judgments.  Some questions are left hanging, and this book gets across how normal and necessary that is.  No tidy answers to the big questions, but great insight into family care giving and a gift of compassionate companionship for those who are caregivers.

Just as many combat veterans need others who’ve been in battle to process what’s happened in their lives, care givers will find in Victor and Losing Susan a level of understanding and acceptance that helps process uncomfortable emotions and experiences.

Reading this is a reminder that care giving thrusts orderly souls like Victor’s into chaos, free spirits into stifling routines, thoughtful people into impulsive action, rational people into irrational situations, spontaneous people into detailed planning, extroverts into isolation and introverts into a land of disintegrating boundaries.  And what’s worse is that this all involves the loss of the person most a part of us and most able to buffer us in life’s hardships.

As I read this book, I was struck by how much I would like to see couples read it while preparing for marriage.  God forbid that they should have to walk the same course as Victor and Susan, but they will walk some part of it.  This book, by telling a family story rather than framing a lecture, brings out the deep reality of

In the Name of God, I take you to be my wife (to be my husband), to have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love and to cherish, until we are parted by death. This is my solemn vow.  (Book of Common Prayer, 1979)

That kind of promise will take us into situations for which we are radically unprepared and, in all honesty, incompetent.  As Victor describes so well,

I never had any confidence about how much I should push or encourage her and how much I should step back and just let her be.

I’ve talked to a lot of people who have to care for others whom they love, and we always recognize this point of commonality.

This common lack is why care giving can’t be pulled off all on one’s own.  We need companions and, if we can recognize it, we need God’s grace.  Losing Susan is a voice for both.