Governor Dennis Daugaard of South Dakota officially proclaimed November as Family Caregivers Month! Give his official Proclamation a read – that’s you lurking somewhere in the statistics and words of praise.
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:
Our publisher’s site features a bit from our book today.
If you are grappling with frustration, especially if it’s born of perfectionism and the constant setbacks of care giving, you might find this little selection useful.
If our efforts to raise houseplants have been hit and miss, imagine some of the misadventures of raising a son with autism. Caregiving provides instant and constant experiences of inadequacy. Just as we’ve tried various strategies to keep the plants growing, we’ve sought out an array of therapies, settings, medications, specialists, diets and more to bring out the best in Joey’s life. And even with all that help, there are plenty of withered efforts to report.
It’s not all gloom and doom. Some of the spiritual uplift (we hope) of the book comes in as well.
Hoping you have some good growth and blooming amid all your fails and weeds today.
The news is that agency staffing issues will delay our son with autism’s move to a group home (which seemed imminent about ten minutes ago) until mid-October.
Meanwhile, he’s descended upon us with increased nagging and bargaining for his Christmas list (yes, he starts early). Mom and Dad are both on the ragged edge right now after bouts of illness and long work hours, so the din of his demands is a mental and emotional pummeling.
Yesterday we began to dish up a big ol’ plate of vengeance. He came home from his day program with this very sweet guide to respectful communications:
THINK Before You Speak
T – is it True?
H – is it Helpful?
I – is it Important?
N – is it Necessary?
K – is it Kind?
BTW we stipulate that this is sound advice, not just for empathy-impaired people with autism but also for married couples, workplace relationships, social media, etc. etc. etc. The world could be a much better place – Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen. (Ephesians 4:29, The New Testament)
And yes, that’s a rack of his daily meds at the bottom of the picture. I’m so tired that I gave up on the photo cropping function and I don’t much care.
So we used this against him with great delight,
Joey: Be a good boy there will be presents?
Hateful parents: Joey, is it NECESSARY to talk about presents today?
Joey: When it’s winter there will be presents.
Atrocious parents: Joey, is it HELPFUL to talk about this before the snow comes?
Joey: When the snow comes there will be presents.
Should-be-arrested-and-executed-parents: Joey, is it KIND to keep talking about presents?
Hey, you find respite where you can get it. That’s care giving. And it makes even a smiley faced flower stink some days.
On this end, we’re still waiting on a new meeting date to get our son’s residential placement going.
This morning while waiting for the bus to his day program, I ran into a young woman’s blog piece about living with her brother and his autism.
What she describes gave me a brief shiver of memory. We endured some of this stuff for years. Yes, our son has come a long way; no, that doesn’t erase the gut reaction when reading
First of all, nobody truly recognises how tough it is merely to care for someone who needs assistance with everything. Stephen is 6 ft. 2 and has to be bathed, washed and nappies changed. Physically, and mentally, it is downright exhausting. His sleep schedule is non-existent and his meltdowns are unpredictable. His self-harming happens unexpectedly and can last for indeterminate amounts of time. These are the children you don’t see in autism awareness adverts; headbutting walls, smacking their heads, nipping and biting and scratching. It is the most draining thing to devote hours upon hours simply trying to prevent someone from hitting themselves, and a task that seems so stupid and meaningless in nature when you know that, come a few hours’ time, it will simply happen again.
And the decades between the young woman and our aging (aged?) selves evaporate as she describes our common worry,
I am 19; I should spend my days fretting about having enough money to go out at the weekend and passing exams to get my degree. My biggest fear about the future should be whether I’m going to achieve my dream job, what countries I will travel to. Instead, I worry about what will become of my brother. He understands nothing of pain and manipulation and danger. My brother is so bearing on the spectrum that he needs round the clock care, and when I am the only one left to do that, how will I cope?
OK, back to waiting.
Just caught some stats from across the pond,
- Research by Sense has shown that up to 50% of disabled people will be lonely on any given day…
- A report by Carers UK revealed that 8 out of 10 carers have felt lonely or isolated as a result of looking after a loved one.
That’s right, half of people with special needs experience loneliness in the course of a day. But on top of that, 80% of those who care for them feel lonely or isolated – and care giving is cited as the source of the emotion.
We get that here. Care giving wipes out spontaneity, for one thing. A friend calls and says, “Hey, wanna go down to the bar and watch the game?” and all you can say is “I can’t” or, at best, “Well, I can watch the first quarter but then have to get home.”
Social life withers because the needs of the people in our care keep us pinned down with tasks or plain old being “on watch, just in case.”
When some neighbors invited us to join them around a fire pit on a cool evening, Melissa and I had to take turns. One of us stayed in to watch our son, the other socialized, then we switched. We couldn’t have fun as a couple.
And many folks are uncomfortable coming into a care giving environment, and friends or family who are willing can come only so often without being turned into exhausted, lonely care givers themselves.
We just enjoyed a great weekend. A childhood friend (of Tim’s) and his wife spent two days here as part of their drive around America. They didn’t ask much of us – in fact, they were clear that they wanted to see us, not go sightseeing around Sioux Falls.
So we relaxed and shared great memories and ate and laughed and talked about what was on our hearts and minds and… were anything but lonely. It was wonderful.
Our son with autism, Joey, was his usual self, staying on the periphery until he was comfortable with the strangers. You can see the “I’m not sure about this” posture in this picture. But notice that he’s not detached – he’s looking right into the camera (eye contact is elusive when autism is in the house). Melissa (middle) is obviously not feeling lonely, stressed or like a caregiver for the moment. (Note: being a caregiver doesn’t mean you can’t be cute, too.)
The point is that any and all of you who know families in care giving mode – and by that I don’t mean just with autism, but Alzheimer’s, chronic illness, aged parents, disability and just about any situation that can confine one person and others to provide care – have great power to intrude on loneliness and isolation.
YOU are a gift. Yeah, it’s great when a neighbor clears my driveway in winter. That saves me some stress and strain. But even greater is time to laugh and talk and BS about stuff. All of that human social glue that care giving dries up, you can spill afresh by your time with caregivers and those in our care.
And don’t forget the goatherds. They get lonely, too.
Just got another kind review of Raising a Child With Autism on Amazon:
This is a book you pick up and don’t want to put it down until you’ve read it all they way through front to back. As a mother of a 22 year old daughter with Down syndrome I could relate on so many different levels. It gave me peace to reaffirm my belief I am not in this experience alone, my Creator is with my daughter and I every step of the way. Highly recommend the book, bought 4 to give to friends/colleagues.
It’s a book for all kinds of family caregivers. Yes, autism looms large because that loved one in our care is a person (now 23 years old) with autism. But as the reviewer notes, there’s value in shared insight and encouragement across “conditions.”
We need all kinds of allies. As we say at the top of this blog, Don’t be alone… The person who reviewed this book in one short paragraph notes family, friends and colleagues. We need to build up those relationships, in person, in print, on the internet, wherever we can. The support flows both ways, ultimately.
As a primary caregiver for my parents and other family members, I’ve found that I need different kinds of assistance. Some people help me with direct, hands-on care — assisting Dad with things like eating, getting out of the house or personal care such as bathing and toileting. But I also need help with hands-off care: dealing with paperwork, grocery shopping, cleaning the house or making phone calls and appointments…
…When I feel alone as a caregiver, I take an inventory of our team of family and friends who feel like family and realize how much backup I really have. The keys: Don’t be afraid to ask, and think imaginatively about how caregiving can become more of a group effort. You’ll be surprised how many people are willing to help when the job is right for them.
I whined about Mother Nature last night, so I guess I can do the same about God the Father this morning.
Care givers have ample experience with unanswered prayer. Prayer that the diagnosis be wrong; prayer that the condition go away; prayer for resources that don’t come; prayer to “do it right” and fix everything that needs fixin’.
OK, sometimes the prayers are answered. But the great mystery is that so much of what’s good, true and beautiful comes when we are rebuffed,
Three different times I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong. 2 Corinthians 12:8-10, NLT
So up and at another day, friends. Let’s affirm the reality together, and let the power flow…
No, it’s not hump day, just Tuesday as I’m typing this.
For most folks Wednesday is the celebration of starting downhill toward the weekend.
But for caregivers this can work in reverse. Folks who take care of kids with special needs take our breaks on weekdays when schools and community programs are in session; the weekend provokes anxiety. And the closer it gets the higher the anxiety rises.
People with autism, like our son Joey, like structure and familiarity. Day programs in classrooms or work spaces provide precisely that. The weekend interrupts it. It is no surprise that Joey’s seizures, which are blessedly few and far between these days, tend to break through on the weekend at home. Melissa had to be in-home EMT on Saturday when Joey pitched out of a chair with an intense seizure.
And of course this was a long weekend, what with the Memorial Day holiday to further disorient and agitate both Joey and his caregivers (Melissa and me).
He did, at least, enjoy my grilled hot dogs and brats, of which he ate five. With buns.
Yeah, that hump day thing isn’t as happy for us as it is for most.
Note: I still don’t know why the video refused to embed in the post prior to this one. Well worth watching if you click on the embed code that’s spilled all over the page.
We went to a wedding over the weekend. All three of us – our son with autism included.
There was much in our favor. The couple came from an extended family of friends that our son, Joey, knows and enjoys. The atmosphere was happy earthy rather than formal and uptight. The weather featured a few of the rationed really-nice-days allocated to South Dakota every year. And there was food to be downed.
As I shared earlier, the rehearsal went really well for our whole family. And we were going back to the same place with the same folks for the wedding and reception.
Maybe it was the volume of the music in the reception hall. Maybe it was the bigger crowd of people. Whatever it was, it brought out Joey’s “best.”
Here’s a surveillance photo of the suspect. Notice that the look isn’t very happy. That little bucket was full of chex mix for snacking – he pulled it to himself, spilling some and playing tug-o-war with us as we tried to retrieve it. Calm words about “sharing” failed. Then he ate all the chex out of the mix and left us with just the pretzel bits.
What you might not be able to tell from this pic is that he’s not in a chair. He’s on his knees on the floor. We tried to coax him into a chair but that agitated him.
Then he scooted on his knees out into the middle aisle of the reception hall – just as the wedding party was set to make its entrance.
Joey’s figured out that he’s big enough to physically resist mom, so I had to hunker down on the floor and drag him just enough to clear the aisle until the wedding party made it through.
Then he stood up and started walking around in front of the head table, which of course was when people wanted to be taking pictures of the couple and their gorgeous bridesmaids and groomsmen.
I managed to stay just calm enough to convince Joey that he didn’t have to sit if he went and stood by the windows along the wall.
The long and short of it is that Melissa and I enjoyed our friends’ wedding very much, we all had a nice dinner and drinks (several drinks in reaction to Joey) and then came home and collapsed.
Care giving is a game of home court advantage – you usually wind up losing on the road.
My picture of defiant Joey – actually the whole vibe of trying to handle him – reminded me of this recent movie scene: