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.
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.
We are almost sitcom laugh track worth ’round here today.
Joey, our 23 year old with autism, has a nasty cough and is home in a NyQuil haze. He’s intoning Disney movie lines in a voice that sounds like the audio of a slow motion replay.
Melissa (mom/caregiver) is suffering from a double shot – one shot of staying up all night to care for Joey and the other a shot of recurring pain from a chronic illness. She’s closed her eyes for a few minutes (btw I think she’s pretty when she sleeps but that’s just editorializing and so I’ll move on).
I (Tim – dad/caregiver) am sittin’ here typing this while my eyes keep closing and head drops on the verge of sleep. I have the day off but I’m sleep deprived from some kind of phantom leg pain (possible arthritis although disc problem is another one the doctor threw in to consider).
We are all beat up in one way or another, but not by one another. If anything, there’s a tenderness in the house that is surprising given how cranky pain can make any one of us.
When all else fails (and hey, what doesn’t when you’re a caregiver?), your kindness remains a gift to those in your care. On days when all of you are hurting, you find out that everyone in the household is a care giver and a recipient of care at the same time.
Letting another’s head rest on your shoulder is a successful intervention, “How are you?” is deep communication and “Sit down, I’ll get that for you” is heroic service.
Sometimes what’s left is you, and you’re plenty.
I sent a prayer request to a friend in the midst of our family sick day, and what he sent back says it pretty well,
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (2 Corinthians 1:3-5)
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 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: