Wednesday, February 8, 2012

everlasting adaptation

A journey with dementia is a long, difficult series of adjustments to a new 'normal'.  Just as the old saying goes, "Want to make God laugh?  Start making plans",  there is a truth about living with dementia that sounds something like, "Want to make sure something is going to change soon, and not for the better?  Start thinking you've figured out how to deal with things as they are, and that life is now stable once more."

It's not an evil consequence of cocky assurance.  It's just the way it seems to be.  There always seems to be a new loss just around the corner.  A new reality to figure out how to deal with.  A new mourning.  A new adaptation to make.  This adapting eventually leads to a new 'normal'.  Which, in turn, morphs into the next loss.

Sometimes the losses tumble into one another, stacking up before old crises have been resolved.  Those are the really difficult times.  Those are the times of fear and anger, panic--and thoughts of just running away.

As dementia has made itself comfortable in our life, setting up housekeeping and leaving its socks on the floor, it seems that the losses and consequent need for adaptation come faster, and deeper.  

It sometimes frightens me when I begin to notice something which would have formerly sent me into a tailspin, and I respond to it with a kind of calm purposefulness that says, "OK, what do we have to do to learn to function in the presence of this?"  Don't get me wrong, it is a far better place than days of frozen fear, feeling helpless, crying buckets and hiding in bed all day.  But it feels as if I have lost some feeling, sometimes.  Become numb.  Can't locate emotions appropriate to the situation.  

I am a counselor of over 40 years, so I 'know' some things that are nevertheless at times difficult to see in myself, or to apply to myself.  I 'know' that the dementia dance is a marathon.  I 'know' that a person can't function long-term in a place of panic and despair.  I 'know' that for the most part, we humans eventually adapt to what is placed before us in life.  I emphatically don't believe that things happen for a reason.  I do, however, believe that what happens to us can most of the time be borne, although it almost always takes some growing and a lot of change.  All that 'knowing', however, doesn't help the concern I sometimes have regarding my diminishing emotionality.  I fear I might be losing  something crucial to my central self.  I wonder sometimes if it means I don't care.  I wonder if I will continue to numb, until I can't feel anything anymore.

My daughter once drew me into a new way of considering this necessary numbness.  As I was off on a fear trip of losing touch with my feelings altogether, she asked me how I reacted to my grandchildren.  Did I react with feeling in response to them--their actions, their growth, the sound of their voices, their very being?   Thankfully, my answer was, "yes, yes, yes, and YES."  Ok, thought I.  Point well taken.  

I still have my feelings.  They are still there.  But I guess I am learning to protect myself from the pain of dementia, because it is a necessary thing.  It helps me to put one step in front of the other.  Helps me to keep on keeping on, as the saying goes.  Enables me to be a more loving, functioning presence in my husband's life, so that we can walk down this path together and he is not alone with his own fear and loss.

Don't get me wrong.  I cried just yesterday while thinking about  dementia and our losses.  The difference is that my feelings are controlling me a little less as time goes on.  

Where are you, or have you traveled, on this path?  Do you, sometimes, worry about becoming  numb?


  1. I don't know how far you are in this journey, but I remember so well the fog, the numbness. To be honest, It doesn't leave. I think I am surviving because of the numbness. If I truly felt all I was going through, I don't think I could handle it.
    The fog clears in bits and pieces.

    1. Just like real fog, isn't it? Being numb does help with deep pain--it is a protective, good thing. i appreciate your reply, Cheryl. Thanks. ;o)

  2. When I was going through the toughest times with loved one's issues, I was always surprised by my delayed reactions -- how I could do the calm one foot in front of the other thing during all the crises and then when I least expected it -- wham, I wasn't doing so well. I would get upset at some little thing two days after or depressed six months later when some major crisis had passed.
    So the feelings are there -- they just come out when they feel like it.

    1. So true. So true. This happens to me, as well. I am the picture of collected functioning, then out of nowhere, I fall apart. It happened the last time we went to the hospital. I suspected a bleed, but there wasn't one. He came home from there all relieved and full of beans. I felt like I needed to crawl into bed and sleep the rest of the day. Fortunately, a good friend had arrived for a visit. Otherwise, I would have done just that. Both of us lightened up in her company. Friends. We would be in a whole different place without them, and it wouldn't be pretty. ;o)

  3. I am nowhere near the place you are now. My husband is a brain cancer survivor and suffers from short-term memory loss, issues with speech, and odd behavior. He is often angry, and impatient with me. He has the type of tumor that will keep recurring, so every two months for the past (almost) 8 years, he has had an MRI to check for recurrence. He feels he has nothing to live for, but he can still write a check, dress himself, and do numerable other daily things. And for this, I feel blessed. I just wish he did as well.

    1. Oh, Kate--8 years of this uncertainty is horrible--both for you and for your husband. To have to face the fear that the verdict might come out badly every 2 months for all that time is so horrible. The adrenaline must just start calming down, then it starts all over again. The anger and impatience that accompany brain injury are the worst. One's own beloved companion becomes someone else, and comfort and trust are replaced by wariness and (understandable) distancing for self-protection. The very person you would turn to in hard times becomes the person that personifies the hard times. Do you think that maybe all of us who are spouses of the brain injured will end up at the dessert table in heaven? (I heard Anne Lamott say that in a talk, and I think this is the destination I would like best.) ...Sitting with you, and Anne, and a bunch of very relaxed and relieved 'fellow' travelers--and no worries about anger, impatience, wheat or gaining weight... xo