Sunday, March 4, 2012

respite: a dilemma

I've just come home from a lovely week away.  Time with my daughter and granddaughter that was so nurturing.  And so healing.  

Respite is essential.  

Today, my first day back, I was able to do all the day-to-day maintenance I usually do, but with much more lightheartedness and energy.   

I am not sure how many more (if any) times I can go away and leave my hubby at home by himself for any sustained amount of time.  It always involves leaning on friends; friends who are so kind to both of us, and so willing to help me to get time away.  But it also always involves not a small amount of worry--will he get his meds regularly, and on time?  Will he have a halfway decent diet (no matter how much I coordinate and cook ahead and write things down for him?)  Will he have another 'incident' while I am gone?  Will he be lonely?  Vulnerable?  Will he do something that, regardless of how benign it might be, will require days of undoing when I get home?

I have worried about these things for years, but this time it seemed a little more like a Wile E. Coyote kind of thing.  (You know, when Wile E runs right off a cliff, seeming not to realize it, then looks down and sees he is running in thin air, and plummets?)  I have seen the day coming for awhile, and don't even know if it is here yet, when leaving hubby home by himself is no longer wise.  

He has missed me this time, and has made no bones about it.  In the past he has kind of defiantly maintained he is just fine without me and doesn't know what I am talking about when I ask if someone might look in on him from time to time.  "It will be a pleasure to live life the way I want for awhile",  etc., etc.  "I might even go for a bus or train ride to the big city by myself while you are gone."  I used to tremble at these last words, until my kids helped me to see that saying these things and being able to execute the plan were two very different things.

He has always been insistent that he does not need anyone here to "watch" him or "take care of" him.  He is a proud  man, and a private one.  He also can hold a grudge.  Mostly at me.  So insisting on a caretaker might ruin the delicate balance I carefully try to create--a balance between caregiving and providing him autonomy.  I work hard to provide him with reasonable amounts of independence.  There is so much he has lost already.  

Yet, he has difficulty articulating things. He forgets many recent events. He drops or breaks things, can't remember how to work things.   He can get confused, has even gotten lost once or twice a block away from the Main St.  in the town we have lived in for 40 years. 

On the other hand, I know I need occasional time away to be able to sustain myself for the long run.  I know that he needs to know he has the ability to take care of himself in some meaningful ways.  Our kids live in other states.  We live several hours away from his brother, and don't have other relatives nearby.

I take time out for small amounts of respite regularly--time with women friends, time for photography, time once a week when he attends a formal respite program.  Time like this for an hour or three is helpful, and I know I'd be lost without it.  But time of a longer nature provides something different--a deep, deep rest.  A time to breathe, to experience life as I used to know it--coming and going as I please.  Time with others whom I love and gather energy from.  Time with my small grandchildren--who require similar things of me, but who are growing, not declining.  Time with loved and trusted and comforting others, who understand, who know how to give to me in meaningful (though small) ways, and with whom I can have interesting conversations, share ideas, and don't have to explain everything.  

Time.   Sustained time.   Enough time.

I know this is not a unique problem.  Every caregiver has to figure it out.  But it isn't an easy thing to do.  

I honestly believe, however, that respite is the key to endurance.  


  1. You believe it because it is true. Respite is the key to endurance. I admire how you have so delicately balanced this. I hope that when my time comes I can be half as patient as you.
    Welcome home. I am so glad for you that your respite was filled with love, and the laughter of small children.

    1. Thank you, Kate. Small children do a wonderful job of healing our hurts, just by being there. Respite. Putting the oxygen mask on yourself first, so you can then tend to those around you. Good advice even when we aren't on an airplane. ;o)

  2. Oh my goodness, It sounded like you had a wonderful time while you were away. I am so happy you were missed and appreciated when you returned. It is not easy for them to understand what we are going through, as we try so hard to make sure they do not realize that things are as difficult as they are.
    I hope this respite gives you strength and also courage to continue to put one foot in front of the other.

    1. Thanks, Cheryl. I know you know all about this. It was nice being appreciated, if even for a small while. ;o)

  3. Self-nurturing, small rewards and time. I finally learned how to take care of myself when I had to take care of others.

    1. Yes, you did, Barbara. And I watched, and I learned a thing or two.... ;o)