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Robin Hobb's Infrequent and Off Topic Blog

In Which Life Throws Me a Curve Ball

Happy Halloween, everyone.

 

I have such wonderful memories of this holiday from my childhood in California.  After we moved to Fairbanks, Alaska, Halloween was more of a challenge.  What costume can you wear over a parka?  But for the time I lived in Terra Linda, California, Halloween was wonderful.  Ray Bradbury Halloweens, of warm winds and children in costume running in clusters from door to door. A time when I could go for blocks, for hours, and no one worried that I was out alone.

 

The leaves were mostly off the trees and the wind would send them skittering down the streets.  The streetlamps made our shadows stretch and shrink as we ran past them, pillow cases in hand, so greedy that no mere brown paper bag could hold enough loot.  Some houses were dim, candles in the window, spooky music playing from open windows.  You might have a witch or a Frankenstein's monster opening the door at those houses.  Scary, but the candy was worth it.  

 

My dad had lost most of his hair by then.  He had a sort of headband, with the two halves of an arrow so it looked as if an arrow had been shot through his head.  He would be absolutlely serious when he opened the door, waiiting for the costumed kids to shout that he had an arrow throuigh his head.  

 

I wrote my very first short story one Halloween, sitting in my witch costume at the kitchen table, waiting for evening to fall so I could Trick or Treat.  I can quote the first page.  "Once there was a cat.  He was black.  His name was Dick."  

 

These are the days when I wish my driveway was shorter and children lived nearer than several acres away.  I don't get any trick or treaters.  I will still put a couple of lit pumpkin decorations on the corner fence posts and hope that perhaps the passing drivers will smile at sight of them.

 

But this Halloween is also a bit dreary for me, and not because of the wind and rain.  There has been a change in my life. And it's going to affect me and how I do things for a long time.

 

Tonight, I desperately wish I were 8 years old again and running off to Trick or Treat.

 

But I'm not.  My life has taken a sudden turn.

 

The care of an elderly relative has fallen to me.  (I'm 70, no spring chicken myself!)  She cannot be left alone, as she is a fall risk.  Every day, there are multiple bedding changes, loads of laundry to wash and dry, trips to the bathroom, meals to prepare and so forth.  The care level is past the load of when the children were small and in diapers.  There are daily attempts by me to try to re-awaken what was once a very sharp mind.  Tries for a real conversation beyond "Would you like a cup of tea now?" or "Shall we try a visit to the bathroom now?" This person was extremely important in my children's lives.  The  Auntie who bought fancy dresses I couldn't afford for special occasions, the one who put an Atari Play Station under the Christmas tree, and the game cartridges to go with it.  This was my partner in caring for both my elderly parents from the time of disability to the day of death.  

 

So.  Now her care has fallen on me.

 

I'm not going to give a long explanation about how in the US, medicare does not cover long term care as in a nursing home or assisted living.  I'll save all that for another day, but I will let everyone know that those options have been considered and rejected.  For now. 

 

I know I cannot sustain this indefinitely.  At 70, I can only do so many lifts from wheelchair to toilet and back again.  Only so many into the car, fold the wheelchair, do the driving, unfold the wheelchair, and lift from the car to the chair.  I know that.  But for now, this is my life.

 

What does that do to my writing?  The same thing it does to my gardening and home preserving and long walks with dogs.  All that is severely curtailed.  As when the kids were small, I have to rise very early to get some time alone with the keyboard.  And when Fred is around, he can keep an eye on things so I can weed a strawberry bed or take the dogs for a run.  Life goes on, just on a bumpier path.

 

And it means that writing events and conventions and all that fun is now on pause.  To my disappointment, I will not be able to attend Dragonsteel Mini Con in Salt Lake City in November. Months ago, we had planned that as a road trip from Washington to Utah.  But now I cannot be absent from the farm for even two days, let alone five or six. I can't go to chat with Brandon Sanderson, and be on panels and sign books.  It's simple.  I can't.

 

Let me be clear.  I am not asking for sympathy and please no advice.  I have binders full of advice from experts.  Medicare, Medicaid, COPES, etc. etc. We've looked at our options and made our choide.

 

What I would ask of each of you is to take, not a minute, but an hour and ask yourself, "What if that were me?"  Not just as caretaker, but as the person needing care.  Talk about it with yoiur family and friends.  Make a plan.  Tell people what the plan is.  Write it down.  Change it as time goes by.  Don't let it take anyone by surprise.

 

I probably will do an informaitonal post later about the difference between Medicare and Medicaid and the big holes in what you might think is a safety net.  But not tonight.

 

If this is a Trick that life has played on me, well, I've had more than my share of Treats.  I can stand up to this.

 

Happy Halloween!