Progression

As my dad's Lewey Body Dementia continues its' relentless spiral progression, I feel like his "world" is shrinking.  I have no other words to describe this feeling.  Dad was a world-class traveler.  He went to many places, had an International Driver's License, was familiar with many cultures and customs, knew how to do so many things.  Last week, we took a trip to the cell phone store and the diner and the new Walmart's down the road.  All three businesses were along the same highway, barely five miles from his present adult supervised living house.  Four hours later, Dad was sated from a delicious lunch but also quite tired.  He does not know what county he lives in-- although so far he does know the state-- nor his address. 

Dad got here "too late."  Too late for me to take him to all the places that I know and love.  Too late to go hiking in the woods, to become familiar with the birds that visit my backyard, to even take a road trip to a scenic overlook he had taken me to years ago when I was a young child.  Certainly too late to swim in the local lakes and creeks, to enjoy my half-grown cat retrieving his toy mouse, to go to a local pig roast or ride in the sidecar of a friend's motorcycle.  Too late to discover old foundations and abandoned towns, to explore quaking bogs and deserted farmland, to take the happy well-behaved trained dog for a walk around the neighborhood.  I had longed to do these things with Dad.  He was not interested in visiting or was unable to.  Working six days a week, raising a child in his old age, endeavoring to salvage a stormy marriage all conspired against our getting together "here."  Instead, I visited "there."

When the dementia forced his marital death throes, Dad did make it "here" for a summer and an autumn but then went back to the wife who left him alone for Thanksgiving and divorced him shortly after.  He made it "here" again when his [newly] ex-wife went off on vacations several times and he could no longer be trusted to live in the condo alone for even a week.  [Yet the leased car remained in his possession.  Go figure].  Even during the five months that Dad lived with us several years ago, it was already too late.

Dad was in no shape then to stroll with my dog around the neighborhood or even walk alone in my neighborhood.  He managed a short walk along a paved bike path one day.  He didn't understand my haphazard garden plots.  He did sit on the deck with me once in awhile but was unable to focus on the birds at the feeders nearby.  

When the ex-wife broached the subject of us looking after Dad so she could go on well-deserved vacations, I insisted that the leased car remain "there."  We met at a half-way point and exchanged Dad and his suitcase between us.  When Dad came up this last time "for good," he reluctantly moved from our home into adult supervised living.  My guilt was tremendous.  But I knew that I was not equipped to handle Dad, give him the routine he needed, or the safety he required.

Dad was able to reminisce.  He could recall shared experiences from my childhood, he told stories about his own growing up, he recounted some of his travels.  He is losing the ability to reminisce now.  I noticed it the other day at the local diner.  No, he didn't remember the incident I was talking about.  The blank look clued me into the certain knowledge that he had no idea at all what I was talking about.  Time has become immediate. 

Sunday I celebrated thirty three years of continuous clean time free from the slavery of active drug [including the drug alcohol] addiction.  For the first time in a very long time, I did not tell Dad about this particular anniversary.  I knew that his world had shrunk.  His world no longer includes the stuff of memories.  He is living from moment to moment.  "I want a hot dog" is something he is still able to tell the waitress.  When asked by the waitress if he wants relish, he is able to respond with a negative.  He cannot think about chopped onions on his own.  I think for him, and again he indicates that he does not want them on his hot dog.  

We talk about the weather.  We talk about the new cell phone that he was forced to purchase because "we no longer make batteries" for his six year old cell phone.  Dad is concerned that he won't be able to plug the charging cord into the new one.  [The old cellie had a charging stand].  He says, "This store is too big.  I don't want to shop here," when taken to the new Walmart.  This is the Walmart that he begged to go to.  It is too big.  It is beyond him physically.  The aisles stretch out into infinity.  [No, he will not use the electric get around chair offered by the store].  The stores will have to be smaller now on the rare occasion that he agrees to leave the house.  I can adjust.  It's alright.

Dementias suck.  They make the world smaller.  They wreck havoc with memories and relationships and with life itself.  I know enough to know that I am losing one person by degrees.  Dad is losing everyone.  Dad is losing everything.  Dad is losing time and place.  There is nothing I can do except to be there when he falls.

sapphoq on life 

Footnote

"Is this the daughter of ___________________  ?"

     She doesn't sound like a bill collector.  Bill collectors always sound nasty, like I am the criminal refusing to pay his bills.  There are no papers signed.  He wouldn't sign any.  And now it is too late.  He is not able to legally advocate for himself.  He is no longer a viable adult.  His pants are ragged because he refuses to spend any money to get new ones.  Sometimes he puts flesh-colored sticky pads on the rips.
 

"Someone reported him as ... "

     I wonder who.  The last guy I talked with from the V.A. about some money that my dad owes?  During that conversation, Dad was yelling in the background, "You aren't telling him right.  I don't owe them any money."  This statement of massive entitlement from my father-- my dad who had taught me that there is no such thing as a free lunch and that anything worth having was worth working for.  He had taught me that ages ago, in another time, before the dementia started rotting out his brain.  
     Now, he refuses to pay any bills.  Unfortunately, his ability to dial the phone has remained intact.  Just the other day, he screamed at the dentist's receptionist, "Who are you to tell me that I owe 160 dollars?  I've only had the dentures for three weeks and they broke."  This is becoming more than a theme.  This is becoming a gigantic problem of emo-epic proportion.
 

"We want your father to come in for a competency test ..."

     I know what the testing will show.  It will show what I already know and what I've known for months.  Dad is rapidly losing his battle to make some order out of his shattered life.  He shifts papers around, has no clue how much money he has in his checking account, stopped subtracting the numbers months ago.  He does not understand that he has had his partial plate for more than a year now, that he owes some co-pays for his health care, that he will never get a job selling cars again, that he will never drive again,  have his own apartment or a woman sleeping besides him in bed and having coffee with him in the morning before he goes off to work again.  He will never stop off at the neighborhood bar for a cold one again.  He will never walk to the corner store by himself again.  He cannot find his way home again.  His diminishing insight has tumbled to zero.  I am left holding my tears.  He denies that there is anything amiss with his neurology now.  He did know for awhile but not anymore.  Who's to say which way is "better"?
 

"The only other appointment is at 4 p.m. and that is too late."

     Yes, you are quite right.  The later appointment is too late.  Yes, of course I will bring him down.  He is my father and I love him.  Every time I think I've had it, it gets worse and worse.  It's a nightmare that I can't wake up from.  Sometimes, we can do all of the right things and the right things don't happen.  There is no longer any hope, not even the hope that he will die quietly in his sleep soon before the real horror has set in.  The real horror is setting in.  And I cannot stop it.  And so, the appointment is made for a competency test which my father has zero chance of passing.


"See you then..."

     Dad never wanted to live here.  He was happy with his second family, with business as usual until the bottom fell out and he lost it all.  When his world comes crashing down, I have to rescue him.  Over and over again, I fix the time on his clock or reset his cell phone or tell him that he has had a complete workup of his head and no Dad, there really isn't any tumor there and no Dad, you don't have brain cancer no Dad, that scab on your leg does not mean that it will go septic and they will have to cut your leg off.  I know that one day I won't be able to reach him.  This is a nightmare from which I don't think I will ever wake up.  This is my father's nightmare and he will never return from it whole and alive.

sapphoq on life 

   

There Are Some People

There are some people that I will "never be good enough for."  I am too political or not political enough.  Obsessed with recovery or working a lousy program.  Over-involved or distant.  Co-dependent or too independent.  Intense or dull.  A bitter atheist or not enough of an atheist.  A dam liar or too honest.  And so on, ad nauseum.  Oh well.

Not everyone wishes me well.  Not everyone has to.  I don't wish everyone well and I don't have to.  Nathaniel Branden  taught me this:  
        " 'Loving everyone' sounds suspiciously like spiritual
           promiscuity--the abandonment of all standards."

Some years ago, a call went out for volunteers in my hometown to sign up to answer calls for a get help phone line.  I signed up.  The woman with the clipboard made a remark to some people next to her something to the effect that I was too whacked out to do this.  Consequently, I never did get any calls from that particular phone line.  Oh well.  Two similar phone lines in two other counties did add my number to their answering service.  To this day, once in awhile I still get calls for help from them.  I've learned to go where I am wanted.  

Not everyone wants or needs my help today.  Ninety nine percent of people don't and they are doing just fine without my ideas and opinions.  I don't want everyone's help either.  I like pears and I want to have pear trees.  Most of the folks up here have apple orchards.  Even if they mutter about how pears suck, I don't have to bad-mouth apples.  Because I want to grow pears and not apples, I will get with successful growers of pears.  If I want what they got, I will do what they do.  I want pears so I will seek out people who know about growing pear trees, not people who know about growing apple trees.  

Self-esteem is about self and steam.  Self-esteem is not based upon some deity's esteem for me.  Nor is it based upon the esteem of others for me.  Rock stars can have bunches of cheerleaders yet some of them still self-destruct.  It's nice to have the approval of one's deity, if that is what one wants.  It's nice to have fans gathering around cheering one on.  But those things are not enough.  If they were enough, there would be no need for personal growth.  We would never have to grow up.

There are some people that I will "never be good enough for."  I have to be good enough for my self.

sapphoq on life