Monday, April 30, 2012


We are in another state visiting our daughter and family.   I am coming down with a chest cold, which I caught from my sweet granddaughter.   It's the end of the day, and she is in the other room, resisting mightily going to bed.  The little one keeps crying;  complaining about needing to poop, needing water, needing her lovey, etc.  This ordinarily wouldn't bother me much--a developmental issue, is all.  Our daughter is an excellent mom.  She will handle it well.  My husband is bothering me, though, tremendously, and our granddaughter's crying puts me over the edge.  

How am I to maintain any semblance of serenity when he seems so unbelievably aggravating on an ongoing basis?  

He and I have been together all day, and I feel as if I am going to explode with frustration and anger if A. doesn't stop talking to me for awhile. Lately he mumbles in this throaty, faint way, full of fumbles and re-starts due to a multitude of unremembered words.  He keeps trying to explain himself.  Even though most of what he wants to say (assessed through my current filter of fatigue and lack of much patience) is not worth the effort to begin with.  Most recently he wanted to remind me that when our kids resisted going to bed, we went in and rocked them.  Problem is that we rocked them when they were infants.  Our grandbaby I is 2.  Rocking is not the answer at this age.  I respond in what I think is a kind and thoughtful way.  He doesn't understand me.  I have to repeat myself, say things differently, hoping for a better outcome.  Today, with laryngitis setting in, it has been a huge effort.

At the same time, I am trying very unsuccessfully to download a talking book for A.  I am trying to prevent what has been happening in the last few days from happening anymore:  A sits for what seems like hours in a darkening room and stares off into space.  This makes me nuts.  This behavior appears to me to be asking for something.  I translate this into, "Here I am at L's house.  There is nothing to do, everyone is paying attention to the baby."   He has made up his mind for unknown reasons to resist any attempts on the part of others to turn on the tv for him.  Watching tv at this time of day is what he usually does.  For all I know, all he does when the tv is on is stare at that, too.  But his sitting and staring inspires something in me that feels like, "If he is unable to amuse himself, it is your job to set something up that will stimulate him.  Entertain him. Sustain what is left of his mind."

When A is not staring into space, he is either ritually unpacking and repacking his suitcase looking for things, or heading out to the nearby shopping center for the third, fourth, fifth time in the day.   

I think about patience.  I do not want to yell at him.  This is not his fault.  But damn, it is not my fault, either.  I don't feel well.  I want to go to bed.  He will go to bed if I do.  I do not want that.  I want to be by myself, finally, while I sleep. I want to enter the oblivion of sleep without him awake beside me tonight. His presence can delay sleep, reminding me of all I have lost, all that needs doing, and the utter futility of most of it.

So, even though he said to me about 15 minutes ago he was going to bed, and even though I encouraged him to stay up for a few minutes to talk with our son and grandson if they called (and now they haven't called), when I tell him it's ok for him to go to bed he says he'll stay up, he's not tired.  Ten minutes pass, then he tells me he's going to bed.  This is one of the many things that make me crazy.  No matter what he says, he reliably will contradict himself in a matter of minutes.  

My tired spirit yearns for this nightmare to have a predictable end.  (And yet that end I wish for would mean the end of my husband's life.)  I tell myself I could do most anything with a predictable end.   I'd cope in part by counting down the days.  Fantasize about what I would be able to do when this is over.  Be busy making plans to go places, be with friends, be alone, sleep, create things with the energy I now spend simply to perform maintenance, plodding ahead one day at a time.  This type of dementia has no predictable end, however.  Who knows how long?  My fear is that when it ends, I will be in my 80s, my relative youth spent, nothing left of me to begin again.

I know the message for me right now is 'self care'.  I should remind myself that I didn't cause this, I can't fix it, and I need to look after myself.  And I am doing the best I can.  And that A is well enough cared for--it is I who needs looking after. Yet I keep looking for something a little more original.  A new way to look at things.  An epiphany that makes it easier to stay the course.  

What I know, however, is that tomorrow will come, and an indefinite number of tomorrows after that, and we will all still be here, including this mostly gentle, benighted man who is masquerading as my husband.  And he will need care, and patience, and loving companionship, and this is how my life will be.    


1 comment:

  1. Dear Mike,
    I am so sorry that I never commented on this post. I read it the day you posted but was at work. I've been thinking of you on and off all week and it's been a busy one.
    I've always admired your tenacity, and people often say the same of me, but I also know that when the day is done and you are alone with your thoughts, the tears sometimes come. And suddenly you wonder how you got to this place, and why things have to be the way they are.
    You already know what to do. And that is to take care of you. {{hugs}} xo