Monday, March 12, 2012

a 'stuck' place

Here's an example of a place we regularly get stuck.  We had a variant of this conflict just last night, although what happened below took place a while ago.  These days I try hard not to belabor anything, to explain less and exit as soon as I see trouble brewing.  It still comes out of left field, however, no matter how I set my radar.  The pattern, no matter how I try to duck it, always delivers us to the same place in the end.  From  a year or so ago:

Circumstances:  I left for work at 8:45 am and return about 6:50 pm.  Tired.  Hungry.  Knowing there will be nothing prepared for me for dinner. My husband is in the TV room,  and greets me enthusiastically.  He is eating an apple.  He has obviously finished his meal.  I tell him I am tired;  it has been an exceptionally long day.  He keeps eating the apple as I warm up leftovers.  He moves the tv table away from his chair so I can use it in front of mine.  We are watching the news.  It is now maybe 10 minutes since I have gotten home, and 5 minutes after I had sat down to eat.  He starts talking over the news to tell me about something he needs me to do to help him.  Nothing of great urgency, though he clearly has been thinking about this most of the day.

His request is confusing and predicts a complicated series of steps to work through to a solution.  I begin to ask questions--in a voice that quite likely betrays my fatigue and a feeling of being overwhelmed (fed by my hunger).  He gets instantly irritated,  and says "Forget about it.  I won’t ask you for anything ever again.  I’m always wrong, you always criticize me, I don’t want to talk about this anymore, forget I asked."  Then he storms off.
He comes back downstairs after about 25 minutes and I attempt to give him a hug to start over.  He rejects this and says he doesn’t want to hug me, doesn’t want to talk about this either.  He is clearly still very angry.  I ask if I just can explain to him why I reacted the way I did--reiterating again for what seems like the 9 millionth time my desire after a long day not to be hit with things to do just when I get home.  Could he write a note to himself or me, wait until I’m settled, etc?  He goes on to reply testily he always does things wrong, and then twirls his finger next to his head  and says, "I have something wrong with my brain”-- meaning therefore he can’t remember to not tell me these things when I just get home.  (He regularly complains when I mention his memory issues, as he feels I exaggerate them.  But here, he is using them as a reason why he can't do what I ask him to.)  He is clearly very angry with me-- for how many things at this point??  

We have words about how he needs to make accommodations to his memory problems, and he responds he has made SO MANY accommodations...then three minutes later says he hasn’t made many accommodations when I say we both have had to make them, and will continue to need  to do so.  He goes back into, “I won’t ask you for anything, I  don’t want you to do anything about this, I don’t want to talk about it, I don’t want to live with you.   I do fine all by myself--it’s just when you come home.  I don’t want to live with you anymore.”  Final statement:   “Will you just leave me alone?”
Before the final “Leave me alone”, I attempt to get to what this was coming from, and his response is more about he always gets criticized, can’t do anything right, I can either let him live somewhere else or I “can love him”--when I ask what he means he mimics me in a hostile way and says, "Isn’t that why we’re still together, because you  LOVE me??"
So I leave him alone the rest of the evening.  I have fantasies about leaving him alone forever, letting him move  somewhere else, as far away as possible.  I am so very sick of these episodes.  He doesn’t seem to  remember all the times when I say thank you, when I tell him he’s done a good job at something, when I do things for him in an easy, relaxed way; when I come up with things for us to do together, when I have  bent over backwards to not get reactive to his hostility, instead just skipping a minute or 5 and then starting again with pleasant talk and hope for the best.
I am so sick of this.  SO sick of always having one more thing that needs to be done.  (It took me until way after 9:30pm  to accomplish the thing he had asked me to do earlier.  Some nice end of the day.  And I am the bad guy.)
And so my angry heart mumbles to itself tonight:  “Go away.  Live somewhere else.  Be happy or confused or burn the house down, I don’t care.  You leave me alone.”  I will go to bed early.  Try hard to let this go, so I can fall asleep and get some rest.
And tomorrow,  I will start all over again.


  1. I wish I lived close enough to give you a hug. To tell you that you will survive. To let you know that I understand that feeling of complete despair. That anything is better than this.
    Just know that I have felt everything you are feeling. I have had every thought you are having.
    Much love,

    1. Many of us (quasi family) who have been reaching out to this particular blogger for years (and years!) and who have watched things deteriorate sometimes slowly, sometimes with lurches have learned so much about the specifics of the situation our dear friends are facing. And we innocently have said all the wrong things that simply isolated them more and more from us.
      Reading all the comments that have been added to the blog is a heartening education and a poignant reminder that our neighbors' problem is only the tip of the human iceberg. So many patients and so many caregivers comprise a silent pall hanging just out of sight in every community. I salute each of you who have taken the time to reach out to those following in your steps. Even you who have been there cannot fully appreciate how much this helps to penetrate the awful isolation.
      Thank you all.

    2. Cheryl--I feel that hug. Your words bring comfort and the affirmation that all this is some strange kind of "normal" in life with dementia. It means so much to me to know that you visit this blog. Ahead of me by a bit, you lead the way and shine the flashlight to let me know I haven't veered too far off the path. My friend Myrt sees your kindness, too. Thank you. ;o)

  2. For a moment, I thought "this could be my house". Especially when he said he's, "always wrong - I have something wrong with my brain". I admire your tenacity and your honesty. I've often fantasized about living far far away.
    Dear Lord, make me a bird so I can fly far far away.

    1. I know, Kate. These are experiences and thoughts we all have. It's part of the journey with dementia. I think it is better for us to talk about it than to keep it in a shameful part of our hearts, thinking we are the only one who reacts that way, and imagining all the other loved ones do things perfectly. NOT! ;o)