Loneliness

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.

Tony Gaines Starz

Tim (right) and his lifetime pal.

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.

Melissa StarzOur 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.

 

ALLIES. Find ’em.

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.”

Triumph_Allied_Forces

Heck, get a Canadian power trio to help if you can!!!

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.

Here’s another call to build supportive bonds for care giving, from an adult child caring for her parents,

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.

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: