So tired from so little

One of the really stinky parts of care giving is that you don’t always do much – but you wind up worn out as if you did.

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I’m sitting here toward what I think is the end of an exhausting Tuesday.

What did I do that has me so worn out?  I’m not sure I know.

I handled our son’s a.m. routines and then went off to one of my two jobs.  I don’t really have a full day off anymore, but on Tuesdays I only work one of my jobs and get done by noon.

Melissa and I had a restaurant gift card from some friends and were looking forward to a lunch date.  But when I got home, she was buried in the agony of a migraine.

I sat in the dark, quiet bedroom with her for a bit.  But her pain was intense and not going away and we finally called our local clinic to arrange a shot for it.

I drove her to the clinic and we sat in the waiting room. They got us in and out pretty quick.

Got her home, got her settled, locked the dog out of the bedroom and then it was time to get our son.

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I drove him to the same clinic for a flu shot.  Sat in the waiting room again.  He wasn’t happy about it but rolled with it pretty well.

Drove from the clinic to his music therapy.  I sat in the waiting area while he worked.  He came out of smiling and the therapist said, “He made my day.”  So I picked up some fast food that he likes as a reward for his good work.

Got home to find that the dog had compensated for being locked out of the bedroom by barking incessantly, denying Melissa any deep sleep.  But the shot had taken the nasty edge off of the migraine.  She was ready to try something approaching food, so I went to make her some tea and honey.

Whereupon our son wanted his dinner on the table.  And the dog needed to go out.

I juggled it all but ate whatever was handy, ignoring the good diet I’ve been on of late.

So I’m sitting here with a less than ideal dinner sitting like a bowling ball in my stomach, catching my breath before handling our son’s bedtime routines and getting the dog out again.  And maybe packing my lunch for my two jobs on Wednesday.  Maybe making Melissa some simple dinner if she’s feeling well enough.  And I suppose brushing my teeth.  Won’t get to the gym.

One of the really stinky parts of care giving is that you don’t always do much – but you wind up worn out as if you did.  There’s something about driving here and there and sitting in waiting rooms and doing common chores that just wipes me out.

I think it is the feeling of having no agenda.  Not just having an agenda interrupted, but having no ability to even set one.  Of just reacting and responding, even in ways that aren’t all that demanding.  But ways that devour a day just as sure as trying to pull out a tree stump or other arduous labor, minus any measurable result.

Togetherness or Privacy? Care giving at the end of life.

My dad was in the hospital for the last week of his life.  There was a family member at his side every minute – except on the last day, when he died during a 15-minute gap between visitors.

I don’t  write that with regret.  I think that my dad represents a number of people I’ve known over the years who, for whatever reason, needed a bit of privacy to die.

We had a friend who was physically incapacitated for his last three years of life.  His wife was an amazing woman who maintained a gentle, joyful disposition while maintaining him at home as his 24/7 care giver.  Her affection for him was radiant.

She decided to take a short respite break, not out of desperation but just to catch up with some out of town relatives.  She found a local program that let her husband spend a few days in a skilled nursing facility so she could go.  While she was gone, he died.

I was able to get over to the facility before his body was removed.  His face, contorted with strain while he lived, was relaxed, youngish and serene in the privacy of his passing.

On the other hand, there are many people who need companions as they cross over.  We’ve all heard of people who were on the edge of death but hung in there for days until the last relative was able to fly in from Lapland to say goodbye.

My dad’s mother was one of those.  He grew up on a subsistence farm in the Ozark Mountains.  His mother died when he was 11.  He recounted how my grandmother, without the benefit of modern hospital care and life support, lived long enough to have every member of the family get to her bedside, where she spoke words of faith and encouragement to them.

I knew a beautiful wife and mother, killed in her 40s by an aggressive cancer.  She was emphatic about spending her last days at home, with her husband, teenage son, a view of the ocean and a small, scruffy dog that I used to tease as “wimpy.”

She died watching a beautiful Pacific day, with those she loved at her side.  When the team came to remove her body, the little dog I’d mocked as wimpy proved to have a lion’s heart.  He planted himself by the couch where she lay and barked and growled, feinted and lunged, forbidding them to take her.  It took her husband ten minutes to convince the dog it was OK to stand down from loyal duty.  The woman did not die alone.  She had all that she needed for her final journey – a loving send off and a formidable escort.

Sometimes those in our care will be able to tell us if they want us there as they die, or if they prefer privacy.  We can do only our best to honor those wishes, since none of us control the details and timing in any but the most extreme life support cases.  The important thing is to hear those in our care and honor their wishes to the extent that we can, even if that means denying ourselves some of what we might want out of the situation.

We might stay close, in great misery, because they want us there.  Or we might long to be by their side but not get there “in time” as they pass away privately.   Stinks for us, but it works for them.  And I think that gives us room to be gentle with ourselves, not assuming guilt over the workings of a profound mystery in which we are more audience than actors.

Our limitations can violate their boundaries

I was in a hospital bed after gall bladder removal. This was back before they went in with skinny little scopes. My scar makes me think that they opened me up with a concrete saw and excavated the sick part with a back hoe.

My mother stayed by my bedside. She filled the air with words, chattering with herself more than with me. She rearranged the stuff on the rolling bedside table every couple of minutes, with constant narration,

“Here, you want this closer, right? You don’t need this. Why do they put these here? This can go in the drawer…”

Just bringing it back to mind makes my insides clench. It was painful while it went on. I didn’t want all the fidgeting and the din of constant nervous talking. I just wanted to sleep and heal up.

What I realize now is how much agony my mom was suffering. Her first son, my older brother, died of cystic fibrosis, and to see me laid out in a hospital must have overloaded her heart and mind with flashbacks.

The reality was that her needs, in the hospital setting, overwhelmed her capacity to give – she couldn’t sense what I needed and unintentionally tormented me with that flurry of words and meaningless busy work.

As care givers, we need to be on the lookout for our limitations. When we try to work beyond them, our actions can become unhealthy and unhelpful, even ignoring the needs and intruding on the boundaries of those in our care.

Our son Joey always sought Melissa’s touch for comfort. As with so many small children, mom’s touch seemed to have healing power. Of course for Joey this often took the form of snuggling up on her lap, then throwing up a lot without warning. Made him feel better, though.

And it provided rewards for Melissa. That physical closeness – even if gross at times – made up for the layers of separation imposed by autism. And it gave Melissa a sense of impact and value at a time when we couldn’t seem to help Joey intellectually or behaviorally.

So it was painful for Melissa when Joey experienced normal differentiation from mom & dad. “I want bye mom” was a phrase he came up with to say, “Leave me alone. Go away.” It was not easy for Melissa to accept a sudden limitation on what she could give to Joey.  There was a strong desire to hold onto him, even when he didn’t want it.  But she recognized his need for what it was – part of his growth expressed in a rather ungracious (also known as teenage) way.

She honors his new boundaries and, wonder of wonders, he delights in being close to her at special times of each day. Cuddling on the couch waiting for his morning ride is one. Her hand on his forehead for a bedtime blessing still makes him smile.

When we feel the anxiety of our own limitations, it is important to

  • acknowledge and accept that we can’t be or do everything
  • work out our anxiety away from the person in our care (go vent to someone else; get some exercise; engage in a hobby or other focusing activity; etc.)
  • concentrate on those in our care, to figure out what they want and need, and respond to them.

Don’t let them become “THEM”

“THEM” was a 1954 movie, in which nuclear tests created giant ants that menaced the world. It was scary when I was a little kid, but now the primitive special effects, over-the-top music and ham acting make it humorous.

I sometimes cut the tension of care giving with science fiction humor. A friend who is raising several autistic kids gets a kick out of emails in which I ask, “What are the space invaders up to now?” When folks look perplexed by my son’s behaviors, I say, “That’s a sign of friendship on his planet.”

Friends let us use a time share in the resort town of Branson, Missouri one summer. There was record heat that year, and we spent many hours in the shady part of a water park.

My wife and I were buying some cold drinks, when I realized that our son wasn’t with us. I spun around to discover that he had gone out to the pool deck, which was full of sunbathers, and there decided he was uncomfortable in wet shorts. So he took them off. That might have been a cute photo op with a toddler, but it was excruciating for the parents of a teenager. I rushed over, covered him with a towel, and led him away from the mortified sun worshippers. I tried to lighten the mood by lamenting the lack of dress code on his home planet, but I wasn’t getting any laughs. Tough crowd.

When we think about the ones who receive our care, and all the ways their needs can overwhelm our abilities and resources, it can really mess with our capacity to love them. They become “THEM,” beings who are so different that they become “aliens” – confusing and frightening intruders in our world.

It is important to plan down time into our days. Yes, respite for ourselves to find refreshment, but also hours with those in our care that don’t include an agenda that can be frustrated and tasks that must be done. Time to just be around those in our care, chit chatting if that’s available, “Uh-huh”-ing and “Mmm-hmm”-ing at their private language if that’s all the connection we can make.

Heck, spouses, friends and lovers have times where they just sit in proximity and don’t say or accomplish much. It is part of loving. It can help us maintain those in our care as “them, not ‘THEM,'” and shield us from burnout.

Soft landings vs. that other kind

So, how was your day? Mine was less-than-good. My special-needs son was treated badly.

Change is inevitable, but change is very difficult for people with special needs.  People, institutions and systems can make the landing on one side of the change soft and graceful, or rough and painful.

Our son, who is now an adult, has to transition to some new care givers, including some of his doctors.  He has to stop seeing familiar pediatric specialists whose names, faces and places he has known over several years and be introduced to strange faces and places.

We, of course, hope that “adult” treatment will include the dignity due to any adult human being.  This includes not only the doctor visits, but civilized care from all within the doctors’ offices.

Several of our son’s transitions are going well!  But today, we had one of those crash-landings.  An adult neurologist who sees another family member had said they would see our son.  Our son’s pediatric neurologist was gracious and her nurse called this doctor’s office, who responded kindly by scheduling an appointment for our son for today.

Preparing our son for this visit was delicate.  I told him the doctor’s name as we were driving there.  He knew that I would be taking him temporarily from his workplace to this new doctor.  He was nervous, still.  My husband rescheduled an important appointment to be there with us.  We arrived in time, having taken our son out of his normal routine and telling him that he was going to see a new doctor (as we had done before his bus came in the morning).  UNTIL…

Until they said they had no appointment for our son.

Until they told us that after they scheduled the appointment, they’d changed their minds and “decided not to see him.”

Until their desk staff blandly informed us, “He should go to a doctor at that other clinic.”

Until, after a very uncomfortable discussion with a very rude person, we were told that they’d sent a letter to someone saying although they scheduled the appointment they decided to cancel it, without any reason except to say that they felt he should go to a doctor in another clinic, a competitor of whom they are not fond.  But they’d never notified us.

We can speculate on the politics between the clinic where our son’s pediatric neurologist was and the clinic of our son’s supposed new doctor but it doesn’t matter.  The “gal behind the counter” was indifferent.

As this just happened today, I am still angry, not only because they were unprofessional, but because they knew that the new patient was a severely autistic person.

At this point, I am still burning. I want the world to know what they did.  Tomorrow is another day.