having your own quest

...a revision of a letter I once wrote to my friend and fellow caregiver, Kate:

One evening at my camera club meeting, three members who had recently been chosen to be in a juried show talked about their work.  My favorite speaker was a man who passed on to us something his mentor had told him.  He told us to look less for the "postcard image", and instead to seek out "precious light".  "Take photos in that light," he said, "even if the photos are of a bubble gum wrapper on pavement.  Get to know 'precious light' and how it works--until your response to it is automatic.  You can then go back to looking for compositions.  Your images will never be the same after that."

Since then, I have been thinking about "precious light" and how I will know it.  He assured us that we would know it if we set out to look for it, but I fear I won't be able to see it.  One day, I suddenly remembered one of my favorite passages from Annie Dillard's "Pilgrim at Tinker Creek", in which she, too, talks about the importance of light.  A paraphrase here, in which she encourages being aware of light: "You cannot cause light, but the least you can do is put yourself in its path".

I'm mentioning this because I am thinking two things about these two pieces of advice.  First, at this point in my life, it would be good to quest for photographic "precious light" if only to provide a focus outside the other concerns of the day--a worthy and absorbing distraction.  Caregiving is hard, hard work.  It can consume you. Second, the advice strikes me as a good metaphor for all of one's life.   I think that in order to endure, we caregivers need to remember our own need to pursue some kind of "precious light"--some place or activity or practice that bathes us with nurturing and renewal.  

We cannot neglect that and expect to remain whole.

a ceremony of losses*

LOST:

balance              eyesight          comprehension          

patience              glasses               joy                                       

keys           phone            remote

travel in retirement     driving ability       sense of direction

crossword puzzles    ability to tell analogue time     

stamina         wallet           glasses

reading       bike riding         swimming

memory        farmhouse         freedom

glasses

ability to understand electronic gadgets

socks     dialing a phone     writing checks

talent in fixing or building      wife's carefree spirit

electronic chargers       playing sports         shoes

magnifying glass       hat          gloves      

spontaneous movement             glasses            vitality

confidence          judgment             career 

everyone's phone number      self determination

distinction between freezer and refrigerator

horsing around with grandkids

cribbage     backgammon         independence 

directions for everything     (can't read them anyway)

speed      hiking        trust in own abilities

operation of thermostat,    oven,      dishwasher    

fluency         words         story telling.....

         

...his remarkably quick and lively mind.

*  Fragment of a sentence in the memoir,  "Out the Window" by Donald Hall 

in The New Yorker Jan 23, 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?

credibility

One of the most difficult and painful aspects of the dementia experience for me has been the frequency with which others' assessment of my husband's functioning is in deep contrast to  my own.  To put it succinctly, "He looks really great..."  Or, "He doesn't seem confused to me."  Or, "How can you think he has memory problems?  We had a long conversation today and he seemed quite sharp to me."   Or, "I haven't seen that in him."

I've met these comments with deep ambivalence.  

On the one hand, I am delighted to learn that my husband has been able to have a normal interaction.  That he was able to keep up, use his memory and intelligence and charm as he wants to and always has.  That others are not embarrassed or wary of being in his company.  This means he won't be isolated, because isolation is not good for anyone, and those with dementia are no exception.

On the other hand, there has at times been deep pain in hearing these remarks, particularly when they come from loved and trusted people.  I've worked hard to remind myself that they might well come from simple kindness--wanting to minimize or not call attention to those things they did see, but don't want to pain me by remarking on.  Or it might come out of their own difficulty in acknowledging the decline of their dear friend or relative.  These reactions are real to me--they mirror my own inner dialogue.  I don't want to see what I notice, either.  I don't want to accept those losses, the little deaths.  So, we look for the positives.  The things that are still there.  And try to find joy in that.  

I believe that positivism is good.  Very good.  I spend a good portion of every day in a positive place.  And yet....

And yet, there is a part of me that has needed very much (and still does) an affirmation of the things I see every day.  Someone who will say, "I notice what you notice."  "You are not making things up."  "You can trust your observations."  "How are you doing with this?"   "It must be hard, do you want to talk about it?" 

Otherwise, I can feel more than a little crazy.  I've doubted myself.  Wondered if I am exaggerating.  Felt I am being passively unkind to my husband.  Felt guilty about being disloyal.  (Disloyal is big.)

But mostly, crazy is what I have felt.  

As time has gone on and my husband's deficits have become more apparent, I feel less  self doubt about my observations.  I find some affirmation in what others notice.  Time has taught me that what I witness when we are alone is real enough.  How he is when he is with others is always the product of considerable energy on his part.  He works so hard at normalcy.  He can pull it off for short periods.  Other people don't know that he goes home--or gets in the car--and falls asleep instantly.  That it sometimes takes him days to 'recover' from being sharp for a sustained period of time.

No matter how much more difficult it is for him to hide his advancing losses, others are still several steps behind me in what they see.  It's hard to get used to that.  I battle the self doubt still.  And the conflict between wanting him to show his best side, be connected and happy, and the real need to be affirmed in my experience of him--it's still there.  

Thank goodness for the few people in my life who 'get' it.  They have kept me from the funny farm. 

mystifrustication

It took me all day to set this blog up, good people. I'm a bit fried as a result, but wanted to start with an initial post.  What follows is an old entry from what I call my Dementia Diary, which I have been keeping on and off for years.

  

I'm glad you stopped by, and  I'm glad I finally put this together.  I aim, as this post I hope demonstrates, to portray my ongoing experience with honesty, feeling and a bit of humor when appropriate.  Here's an example from several years ago.

"September 30 2008

Report from Planet Braom Omkiru   

...fingers on keyboard.  Right hand one letter off to the right.  “Brain Injury” becomes "Braom Omikru."

A perfect metaphor for what it is like to live with Brain Injury--signals scrambled, things don’t look right, best intentions go awry.  Mystification and frustration balled into one.  Mystifrustication.  

I’d write more but after a 13  hour day with only a one hour quiet time, I want to go to bed.   More detail next time.

sincerely,

Ms Tifrustication"