Monday, November 25, 2013


     From a young age, I fancied myself a writer.  I wrote my first poem in fifth grade.  I was hooked.

     I had the makings of a writer long before I discovered that I could have an audience.  I was a somewhat quiet child who needed alone time with my books.  I liked books and the outdoors and animals-- things I still love today.  I was not terribly social.  I had acquaintances of all ages but very few friends.  I didn't fit in with the more typical kids in my school classes.  Later, I drank and did street drugs to the point of oblivion.  And still later, I found that writers too-- even frustrated writers-- do recovery.  I did some poetry open mics, got published in over fifty litmags and zines-- many of them more than once, got stuff accepted into three anthologies.

     I kept talking about the novel that I was going to write.  I didn't write it.  I could write poetry after a fashion, churn out essays and a few bad cartoons [which got published, go figure] and some short stories.  But I could not think of what to write in the novel.  I started blogging instead.

     This year, I decided to do NaNoWriMo.  Unfortunately, I made this decision on November 13th.  I did not sign up at the website.  I decided that since I started late, I would end on December 13th rather than December 1st.  And I am writing.  I surpassed the 10K [words] mark and I have 40K [words] to go.  On December 13th, I hope to have a first draft of a novel that will not be putrid.  Rather than striving for the elusive bestseller, I set my goal to write the novel that will not cause everyone to run screaming from the room with burning eyes and queasy guts.

     It's working.

sapphoq on life

Friday, November 15, 2013

The Cellphone

Dad's had a cellphone for a number of years.  He was fluent in its' use and operation but like many other skills, his dementia has taken that away from him. 

     A few weeks ago, we went to the cellphone store to find out why his cellphone would not hold a charge as long as it used to.  After some fancy cellphone testing involving a machine and scary-looking probes, it was determined that "the battery is bad."  Not only was the battery "bad," said battery could not be replaced because it wasn't being manufactured anymore.  Almost everyone in the cellphone-speaking universe is quite enamored with "smart-phones."  My dad was barely able to operate his simple "dumb-phone."  The sales staff gave him the "only dumb phone left in the store" and a two year contract for it.  The staff claimed that the dumb phone was worth three hundred dollars.  Sorry dude, I wasn't born in a Luddite void.  I protested the contract.  I told the guy that Dad would be dead before the contract was up.  To no avail.  Dad wanted the use of a cellphone, his own cellphone.  So away we went with his newer dumb phone. 

     Dad pointed out right away that he had to maneuver the included charger into a hole [slot] located on the left side of the new dumb phone.  His old phone had a charger he could set it into and that was easier.  I knew there was going to be a bit of trouble when is dementia-affected vision could not distinguish the standard picture of a cornfield from-- whatever it was that Dad thought it was.  I couldn't quite make out what he meant there.  But he seemed to be able to associate the yellow in the picture with the word "corn."

     Two weeks passed.  Two weeks of, "Show me how to ______ ."  Dad could not find the location of his contacts.  Once I located the contacts for him, he appeared to be trying to memorize the order of the contacts rather than being able to read the names of the people.  Then he didn't know how to dial the numbers or the shortcuts [which had been transferred for him from the old dumb phone to the new dumb phone].  He also complained that he was missing calls because he couldn't answer the phone fast enough.  [Dad had not been able to understand or to access the voice mail feature for a couple of years now].  He could not remember how to find what calls he missed, even after I showed him a number of times.  I gave up.

     The house has several phones.  The folks who live there are able to use the phone as they wish to and all of their calls are free.  No charge.  The folks who live there are also able to receive phone calls from the outside.  Not only that, the staff will bring a portable phone to them when they do get a call.  Dad will have to get used to this arrangement.  I talked the phone company into cancelling Dad's contract without penalty on the basis that Lewey Body Dementia is progressive and fatal and that his deterioration has speeded up dramatically within the last two weeks.  I told Dad the new cell phone had to be "fixed."  I brought the new dumb phone back to the cell phone store.  End of story.  [N.B.:  It's called "therapeutic lying" and it is a necessity when dealing with Dad and things that must be done.  Therapeutic lying is not something that I condoned before I found that I had to use it with my dad because of what the dementia is doing to his brain].

     Guilt?  Yes.  Always guilt.  The guilt over pulling Dad's cellphone was mitigated by what he told me he had spent the morning doing [before I showed up to get the new cell phone].  Dad had spent the morning trying to get his old[er, disconnected] cellphone to work.

sapphoq on life says:  Don't ever doubt that dementia sucks.

Monday, October 28, 2013


Dad had a housekeeper who I will call "Jenny."  Jenny was old when I met her.  She must surely be dead by now.

Whatever magic Jenny was able to infuse into a household with cleaning products was long gone by time Dad hired her.  She was an old woman on a limited income.  I don't know how Dad met her but it was evident to me that he felt sorry for her.

Jenny came twice a week.  She used to leave the picture frames slightly tipped to one side.  That was supposed to be a sign that she had dusted them.  That was the only way I could tell that Jenny had visited us on the days that she came to clean the house.

sapphoq on life

Saturday, October 19, 2013


Dad had an employee named JimBob.  I forgot about him for awhile but then I remembered him once again.  JimBob was a drunk.  An alcoholic.  A dipsomaniac.  He drank too much.

JimBob was brilliant.  He was an excellent worker when he worked.  Liquid lunches did him in.

Dad didn't know anything about recovery from addiction back then.  He tried to help JimBob.  I don't know what form the "help" took.  I was only aware of Dad spending extra time with him, talking.  But talking is not what JimBob needed.

Most people-- stats say 90% but it may even be a bit higher than that-- don't have problems when they party.  JimBob did.  Once he started, he had to finish it.

Dad finally was forced to fire him.

JimBob, I don't know where you are today.  Or if you are even still alive today.  Abstinent or still using or dead or locked up somewhere.  I hope you've gotten healthy in the intervening years.
I hope someone knew how to help you.

sapphoq on life says:  We do not know enough about how to treat people who have addictions.  I know there are tons of programs-- detoxes and crises centers, in-patient and out-patient rehabs, counseling and self-help meetings and mutual aid societies.  The hard truth is that Twelve Step programs and treatment based on them is not right for everyone.  There needs to be more research done in order to find and develop options that help more people.  The success rate of the ______________ Anonymous groups is dismal at best.  Rehab facilities remain prone to paternalistic viewpoints and attitudes towards their patients as evidenced by the almost automatic assumption that all of the patients are there to be treated, that their "best thinking" got them there, that if there is a lack of a traditional god figure that must be remedied.  The creative and the freethinker get lost or "therapeutically" discharged from such places.  Those with serious mental disorders have even higher rates of returning to active addictions than those who don't do.  Something has to change.

Those are my thoughts tonight.  I hope that JimBob has found his way to health in spite of the Addictions Treatment Industry System.

Thursday, October 03, 2013

Thirty Three Years of Freedom (and some change)

I started writing this one quite awhile back and then I forgot about it.  I don't know if I ever published it or not.  So here it is.  Or here it is again.  If it is a repeat, mea culpa y soy listo.

It was the summer. I was on the beach in Lavallette reading the book "Go Ask Alice" written by "Anonymous." It was an anti-get high book. [My mother took this book away from me!!! She forbid me to read it.  I managed to finish reading it anyway.] This was in my pre-druggie era -- the time when I was waiting to get high and the local head shop-- The Last Straw-- was one of my fave hang-outs. Hippies were in.

Fast-forward: It is several decades later. Day after Thanksgiving 2005. I'm bemoaning the facts that not enough provocative material, comments on the news, or recovery stuff is in my blog. I drift around the internet, finally landing at Drifting through the categories, I discover the truth about "Go Ask Alice" under language sub literary. Oh woe is me.

It wasn't written by a teenager at all.

Worse than that, the book featured characters from divorced families who dropped out and turned on to street drugs. An anti-divorce diatribe. Something I missed in my initial reading of the book. Oh me. Oh my.

I have to forgive myself. I was a child after all. A precocious child but a child nonetheless. A child being brought up in a household not famed for its' knowledge of the difference between the truth and a lie.

I don't blame my mother and step-father today. They had their own sicknesses to deal with.
My parents divorced when I was very young.

Those days were the days when drug addiction was equated with divorce. Can I gain comfort in seeing "Go Ask Alice" as a product of its' times?

Are we a product of our times? The old nature versus nurture trap. Maybe, just maybe, things are not as clear-cut as they seem. What to do?

One of my ex-helping professionals said to me once, "But don't you think everyone is in recovery from something?"

This was after I had categorically rejected the idea of 'teaching [her] how to work the twelve steps'.

Short answer: NO. to both.

Now I am grown. Scarred people exist. I used to be one of those people scarred by years of addiction. I hope I never forget that scars can B L O O M. Something twisted and binding has become the touchstone of healing, strength, and freedom in my life.


Monday, September 23, 2013

Apple Picking

Dad went apple-picking the other day to a local orchard.

"Do you remember when we went?" I asked him.  "We went with cousins Glenn and Ricky."  [In the fall of sixth grade]. 

"Your mother and I took you also when you were in nursery school," he replied.  "You and another little girl that you got along with.  "But I don't know who it was."

I nodded but I sort of thought that he was mixing me up with one of the other sibs.  I was hardly a social butterfly at that age.  My company wasn't sought after.  I was quiet and I kept to myself.   I hope that whoever he'd taken apple-picking in nursery school had fun.  Because it wasn't me.

sapphoq on life

Thursday, September 12, 2013


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 

Tuesday, August 20, 2013

You Say

     You say you get "it." 

     I've done my research also.  I was the one who first brought up his symptoms which fit the diagnosis, even before the two neuro-docs concurred.  I've worked with old folks who had dementia-- a whole variety of dementias-- for many years.  Things got different when Dad caught it.  Suddenly, I was the crazed family member who could not keep Dad at home.  I was the one that the younger staff members looked upon with suspicion wondering if-- or when-- I will come down with it also.

     I know-- from my own brain damage-- that after the brain gets loosened up, the brain goes into survival mode.  Part of that change
is a self-centered centering at a time when all of the middles are 
rapidly exploding into lesions of scarification.  Dad's utter and total
self-centeredness is not something he would have chosen for himself.  Through the passage of time, my own survival mechanisms have allowed me a bit less self-centeredness.  Dad, not so much.  His brain is getting bombarded with lesions and there is scarsely time to breathe in-between new formations. 

     You say you get "it."  You say you understand his dementia.

     Dad is not a case.  He is not the L.B.D. in room three.  He is the man with a failing brain that I love with a fierceness even through all of his atypical neurology messing around in his head.  My heart breaks every day.  My heart breaks next door.  Yours breaks from a distance. 

     This dementia has made us strange to each other.  We cling to our separate life rafts in our separate spheres, each of us with our own twisted and bleeding wounds.  I thought perhaps that our two rafts could connect.  We could traverse the rugged seas in tandem, both of us supporting the other as we also support ourselves and Dad.  The winds whip up in fury screaming, "Not to be.  Not to be."  Instead, I've found a cousin and an aunt [who is not Dad's sister but my mother's sister] and my life partner and a doctor who each bring their own brands of wisdom to my life raft and who help me to support Dad.

     But this is not wholly about any of us.  We are the bystanders.  Dad is the one who is fantastically and utterly consumed.  We are losing one person.  He is losing everyone.  He has already lost so much. 

     You say you get "it."  You say you understand his dementia.  Can you please explain it to me?

~ sapphoq on life ~

Wednesday, August 14, 2013

The Other Day

     I went to see Dad.  It was on Sunday that I went, in the morning.  I found Dad snoozing in an easy chair near the television.  He woke up and decided that we could sit on a couch to visit.  He almost fell getting there.  "Careful!" a few of the old folks who were sitting in easy chairs near the television said to him as they watched him lurch across the room.

     Dad sat down.  He held his head.  It is always the left side.  He was having another dementia headache.  "Yes, get me something ," he said when after several attempts he recognized what I was asking him.  One of the old ladies turned to two others, "He is getting worse since he been here."  The other two nodded.  "Yes, he is."  Dad was too focused on his headache to pay attention to what they were saying.  To their credit, they kept their voices low.  Even if they hadn't, I would not have "corrected" them.  I was a guest.  And I had no right to "correct" an older adult who were merely stating a true observation.

     The staff doing meds that day gave Dad a non-aspirin over the counter pain reliever and some orange juice.  He thanked her.  "I love orange juice," he said.  After a few minutes the headache was lessening somewhat.  Dad closed his eyes and rested.  I noticed that his hair was greasy.  I knew that his self-care skills were declining.  Damn, I thought.  He may live long enough to have to go into a nursing home.  These days, Dad was looking more and more that way to me.  I made a mental note to have him evaluated sooner rather than later.  "You might as well leave," Dad said.  I understood.  "I'll see you Friday, Dad.  I love you," I leaned over and gave him a soft kiss.  "I love you too," he replied.  I waved goodbye to the old ladies in recliners watching television and made my exit.  

sapphoq on life

Monday, August 05, 2013

Traces of Glucose in the Family Tree

My dad's mother came to live with an aunt after his father died.  I remember her as being a woman of few words with a bun sitting in her bedroom quietly.  My dad had gone to pick her up.  I wanted to go to but I wasn't allowed.  My aunt introduced us and left the room.  Grandmother wanted a kiss but I pulled away.  I wasn't ready yet.  A few weeks later, we returned for a visit.  That was when I did allow physical contact and I sat with her quietly for a few minutes.  I was in second grade.  I also didn't talk much.  I regret that I don't have any other memories of her.

Grandmother had diabetes, type I.  It used to be called "childhood diabetes" and she had in fact had it since her childhood in Germany.  She died of complications.  I don't remember that.

Years later, my dying cousin filled me in on more of my paternal grandmother's story.  Fluent in at least six languages, she had left Germany after graduating high school.  She migrated to Brazil where she worked as a governess for a physician's family.  When they moved to the United States, she moved with them.

My dad told me that she had met his father in the new country.  He was a recent immigrant from Italy.  They began a courtship.  My grandfather wanted to have sex with her, using a metaphor about eating an unripe banana.  My grandmother threatened to throw herself in front of a train if he were to "pluck the unripe banana from the tree."  They got married instead.

The kids came one by one.  During the Depression they went to live on a truck farm.  Times were different then.  When they returned to their home city, they had chickens in the backyard, several large gardens, a few cats, and a dog.  My grandfather was a gardener.  There was one bush outside of the house that he had cut to resemble a wave, Dad has said.  My grandmother sold the eggs from the chickens and took care of her children.  Money was tight even after the Depression.  Grandmother wanted a houseplant.  That wasn't in the family budget.  So she propagated a sweet potato vine which had a place of honor on the mantel piece for all the years of my dad's growing up.  My dad remembers her making pot roast.  He also remembers when he tried smoking cigarettes for the first time and he accidentally set the front porch on fire.  "Maaaaa!" he yelled for her as the flames licked the side of the porch.  [The fire was extinguished].

In her later year, an aunt-- mother to the dying cousin who had died by that time-- was diagnosed with type II diabetes.  She was a heavy-set woman.  During her last year of life, she suffered through amputation of both of her legs.

My mother was diagnosed with type II also, even though she was not overweight.  She succeeded through dietary changes to reverse the disease.  She is the only woman with type II that I know who had.

Dad's latest wife had restricted his carbohydrate intake to no avail. His dementia did not go away and he continued to walk to the corner store to sneak carbs on a regular basis.  He had always liked peanut butter cups, ice cream, and pastries.  I got Dad testing when he came up here.  After finding out that he certainly did not have diabetes, his first requested stop was to a local store.  "I'm not diabetic," he proclaimed loudly.  "I can have a chocolate bar."  He did.  Dad still has a sweet tooth.  Even so, he does not indulge it nearly as much as I have indulged my own fondness for sugar.

I had always labeled diabetes as a niggling concern in my anxious brain.  I didn't want it.  But I also didn't make any lifestyle changes to avoid or delay the onset of diabetes in my own life.  No, I made one dietary change.  I stopped using creamers and sugar in my coffee.  I drink coffee black and I have now for over five years.

I had a medical appointment recently.  After a routine urine test, the doctor came back into the examination room.  He frowned at the paper he held in his hand.  "Your urine came back with traces of glucose," he said.  "I want to send you for more bloods."  I took the paper and left.
The next morning found me [starving] at the blood drawing station.  Four tubes and one bruise later, I left.  The entire next week found me exclaiming at anyone who would listen, "I lost all of this weight and I might have diabetes anyway!"  I was angry.
Never mind that I had abused my physical body for many years via the ingestion of large quantities of sugary snacks, not eating breakfast or lunch consistently, several experiences with yo-yo dieting, and little attention to nutrition.  Even my aborted experience in TOPS and a "successful" maintenance of a 65 pound weight loss for more than a year in TOPS did not result in consistent healthy eating habits.  I would skip breakfast almost daily.  Some days I skipped lunch in favor of ice cream or chocolate or both.  I cut back on my eating for two days before every weigh-in.  That was how I managed my temporary success.  In spite of the weight loss, I continued with some eating-disordered behavior.  I wasn't starving myself or throwing up.  I was justifying my continued love affair with sugars and fats because well, hey, I was no longer obese.  There were some other folks in TOPS skipping meals and playing loose with their eating habits.  They were honest about what they were doing.  I was not.  Since leaving TOPS about a year ago, I gained back 24 pounds of the 65 pounds that I had lost.
I made a decision.  The night after my bloods were drawn, I decided to begin to follow a healthy eating plan regardless of whether or not I had diabetes.  And I did.  I have eaten breakfast every day since that night.  I have eaten lunch every day since that night.  I have eaten fruits and vegetables every day since that night.  I have concentrated on healthy snacks instead of garbage snacks. 
I went back to the doctor the following week.  I had lost two pounds.  "Your bloods came out normal," he said.  I told him that I had been talking with acquaintances who have diabetes type II and I have found no one that follows their prescribed food plans.  "That's why we have so many bad diabetics here," he told me.  "By 2050, one of every three Americans will have diabetes II."
It is now a week later.  I am still following a healthy eating plan.  I think I could get used to this.
cross-posted in shortened form to several other places

Monday, July 29, 2013

Dad's Home

     It is very difficult to consider taking away someone's right to self-determination.  I have found that it is necessary in order to keep my dad safe and the community safe from him.  If it was up to Dad, he would get a job and a car and his own apartment.  [Amazingly, he still has a valid driver's license from his home state despite my best efforts otherwise.  I reported him as an impaired driver but they gave him back his license anyway.  He went on to have five car accidents in five months and they allowed him to keep his driver's license...].  Dad is not able to navigate around his neighborhood these days on foot, stay away for anything like four hours at a time, or keep himself safe.  If it was up to my dad, he would not take any medication for anything.  He would go to a dentist but not to any doctors unless he was developing a flu or something like that.  And he would also be treating his growing baldness with an expensive chemical treatment from a bottle.

     To those who were and are able to keep their loved ones at home, all I can say is "Bully for you."  We endeavored to do the same.  But it didn't work out so well.  My housemate was upset because having Dad in residence was like living with two of me.  Dad's politics and obsession with a certain news station were grating to the housemate.  From morning when Dad's pacing woke me up until he went to bed at night, I was his entertainment.  Even in his dementia, he wanted to go, go, go.  He refused any outside help-- he didn't even want a friend "housekeeper" coming in to our home so I could get an hour or two off for errands-- and also refused to even consider any form of day program or respite.  Having to watch that he was taking his pills was also wearing.  Dad did not want to go to his medical appointments either.  I wasn't able to leave for twenty minutes in order to walk the dog without worrying that Dad would let in anyone who knocked on the door.  So no, this wasn't working.  In spite of my best efforts, I could not make it work.  Dad was not and is not tractable.  I have the greatest respect for those who take care of their loved ones in their homes.  Please don't judge me because I wasn't able to.

     The assisted living facility takes Dad to all of his local med appointments, administer his meds, ensure that he is as safe as he possibly can be, shop for his personal needs, provide entertainment and socialization daily, and observe him for any changes in his mood or behavior.  Although Dad can be demanding at times, at least our visits have become social visits.  Dad consistently has indicated that he does not want me to help in his personal care routines.  He accepts help from the attentive and caring staff much easier than he ever did from me.  

     There are some things that Dad is still able to do.  He follows politics and voted in the last election.  He can pick out what he wants to wear.  He can shower and shave.  He can decide whether or not he likes someone.  He can express pleasure and displeasure and worries and joy.  He has opinions.  Here are some things that Dad can no longer do: balance a checkbook, dial a phone number successfully, accurately relay his medical history to medical professionals, recite his current address, cook, play cards, drive safely, reason out a complex problem, write clearly, decide to pay his bills without prompting.  Actually, Dad is resistant to paying any bills except for his rent and his cell phone.  Consequently, he no longer pays his bills.  That is taken care of for him out of necessity.  Dad does not understand why dentists cannot take time payments or that his cable bill and his cell phone bill are two separate bills from two separate companies.  Some days [although the days are fewer and farther in between these days], Dad recognizes that he has dementia-- but he can no longer recall which kind he has-- and he will say that his "brain is failing."  Other days [most days these days], he says he is in excellent health except for his eyesight and that his forgetfulness is just regular "old age."

     There are things about my dad that I wish I had never learned.  There are other things about my dad that I treasure knowing.  I love my dad.  It is difficult to witness, this losing of his self.  I am privileged that I can visit my dad and comfort him [sometimes] and laugh with him and make sure that he is getting his needs met and some of his wants.  Even though Lewey Body Dementia sucks-- all dementias suck-- I would not have missed the experience of having my dad living nearby for the world.  Eating lunch with Dad, sitting on the sunny open-air porch with Dad, hanging out with Dad while listening to some musicians that the house has brought in for entertainment, socializing with Dad and his housemates, spending quality time with Dad-- this is the stuff that memories are made of.  

     There is a new dog living at Dad's house.  The new dog is a joy.  All of Dad's housemates appear to really like the dog.  The dog is willing to be petted but is not demanding of attention, doesn't jump on the furniture, is quiet and doesn't really bark.  The dog's presence has gotten Dad and the others to talk about dogs that they have known and loved.  The dog is an older dog who was not able to tolerate being left alone in his foster home.  Because the dog found a place in assisted living, he was saved from a certain death.  The dog is never alone.  The house is never empty.  In a sense, my dad too was saved from a certain kind of death.  Dad considers the assisted living house to be "home."  After his recent hospitalization, Dad remarked, "It's good to be back home."  Dad is comfortable there.  He is comfortable enough to kick me out.  When he's had enough of visiting, he says to me "It's time you got going."  And I can go now, knowing that my dad is cherished and looked after and that he has other people there all the time.  I hope that Dad will die in his sleep at the assisted living home.  I don't want Dad to have to be transferred to a nursing home.  I'd rather he go to bed one night at the assisted living place and drift off and just not wake up again.  Dad is as happy as he can be in spite of the lesions that are ravishing his brain.

sapphoq on life    

Wednesday, July 24, 2013

The Free Lunch Is Not Free

dedicated to @JeremyCrow4Life who got me to really think about these things at a time when I didn't want to.

     My cousin has my life and I consequently must have someone else's life although I don't know whose life this is.  After several false starts, I defected from my chosen career-- an action that was necessary to my well-being but that I view with strong regret nonetheless.  My final career [to date; I am planning a return to something else in the near future] was prematurely cut short by a serious accident and I am quite lucky to be alive.  Cousin chose the same career that I did and is getting on swimmingly.  I've got one marriage and no human children.  Cousin has had two marriages-- one at a time-- and some children from one of those.  I live in a small house in the middle of nowhere with a shedding dog and some other animals and some fixing that I continually have to do whether I want to or not.  Cousin lives in a stylish condo in a stylish city with a stylish does that does not shed-- and maintenance and fixing is part of the monthly fees.  I have tussles and at times outright wars with my weight on an on-going basis.  Cousin is slender and athletic.  How did my cousin get my life?  I don't know.  [Maybe I do know].  How did I get someone else's life?  I don't know.  [This is my life].  Damn this reality stuff.

     I would have liked to be a ginger.  I think red hair is sexy.  I wish I had the green eyes that only two percent of the human population has.  I want curly hair but instead mine is naturally limp.  My hair is disappointing.  Instead of fussing with dyes and perms, I grow my hair out for the little kids with cancer.  Since I don't appreciate my hair, I donate it to an organization that can use it to give someone something that they will treasure for a time.  I don't like sticking stuff like contacts into my eyes so I deal with my eyes the way they are.  My vision did not make it out of the accident unscathed.  In spite of good enough visual acuity, my eyeballs are engaged in a continuous riot against playing nicely with each other or with the brain.  I've gotten used to the photo-phobia, the permanent double vision in one eye, the ocular-motor dysfunction, the perception problems, and the feeling that my eyes are on some kind of acid trip without any L.S.D.

     [I will skip over the internal whining dialogue as that stuff isn't of interest even to me. . .and pick up where my thoughts are more rational and also are leading to productive action]. 

     We are not all "born equal" nor do we have "equal access" or "equal opportunity" through out our lives.  Some babies are born sickly.  Others are born with obvious mental defects.  Some are born blind or deaf or with other sensory issues.  Others are born with senses intact.  Some are born into addiction.  Others are born into average families and circumstance.  The toddler who is immediately sucked up by the System and stuck into the Special Education mode may find reduced expectations and experiences.  The child in an overcrowded school where violence in the hallways and the classroom is a daily occurrence runs a definite risk of a substandard education.  The child whose relations-- like their past generations of relations-- are dependent upon the State [welfare, disability, social services...] may have to make his or her own way in the world in order to break the trend of not working.  The teen who yields to drug addiction [including the drug alcohol] will live to regret what might have been unless the addiction takes him or her first.  The adult, like me, who has had a major interruption in his or her life, has to work hard to get away from certain "helping" professionals-- whose goals are merely to fill a quota-- and then persevere in order to achieve his or her own challenging goals.  As adults, if we choose to do so, we get to grapple with the reality that there is no equality among fetuses, babies, children, and adults.  We can blame our finances, society, political systems, disabilities and abilities, and emotional states for our troubles.  Or, we can wage war against that within ourselves that we use as excuses and barriers which "hold us back."  If we want something different, we have to do something different.  The System's price for hand-outs is an impoverished life.

     I am at a juncture and I am excited to be here right now.  I know what I know and I know what I don't know.  My laziness and my fear no longer get to dictate my actions or non-actions.  Some of my circumstances I cannot change.  I cannot rewrite my past.  The accident does not disappear because I want it to.  I would have been far better off had the stoned driver rammed someone else's car into a house rather than mineThe actions that I took-- in-between thinking "This is it.  I'm dead"-- in response to someone else's actions that I had no control over saved my life.  My experiences to date do not yield to the subjective reality of the New Agers that has infiltrated popular culture.  I don't do wishy-washy.  Yes, in my younger days I wanted to believe that we "choose" everything that happens to us.  Yes, I wanted to believe that there is a "reason" for everything.  I know now that I ascribe meaning to my life.  Some things happen that are truly beyond my control.  I make other things happen.  Dad used to tell me that if something is worth having, it is worth working for.  I had a chemistry prof whose favorite saying was "Go for the gusto."  What I do next with this life is up to me.
sapphoq on life




Monday, July 15, 2013

The Hospital Makes a Mistake

Dad recently spent a week in the hospital.  He needed to be there for a medical problem and that might have been okay if he'd been given his dementia med during the time that he was there.  I was away during much of that week on a family commitment.  In fact, I was away when he was taken to the hospital by ambulance.  It was not until his last night in the hospital [and I'd been back home for two days or so] that I found out that the dementia drug wasn't being given.  There is simply no excuse for this oversight.

The hospital had options.  Staff from his house could have brought down his dementia drug so he would have had it for a week.  His dementia drug could have been ordered by the hospital.  The hospital doctor could have ordered a similar but equivalent dementia drug.  The hospital doctor could have asked for a neuro consult if the hospital doctor wasn't comfortable with ordering Dad's dementia drug or a similar dementia drug.

I happened to be in another state.  Even so, my phone number was available to the hospital.  I did not get a call notifying me that the hospital did not have Dad's dementia drug in stock.  As far as I know, no one at his assisted living place got a call either.

As a result of the hospital's oversight and Dad not getting his dementia drug for a week, Dad decompensated.  He evidenced periods of confused thinkingDad thought he was being kidnapped.  He was worried about the laundry being done.  He wanted to leave.  He was not able to sit up in bed or roll himself out of bed.  He didn't know where he was.  He tried to beat on the nurses who wanted to help him with his personal care.  Previously continent, he became incontinent.

Once out of the hospital and the schedule for his dementia drug was resumed, he knew where he was again.  He knew he had been in the hospital.  He was no longer worried about the laundry being done.  He became continent again.  He didn't try to beat on anyone.  He was able to sit up in bed and to roll himself out of bed.  He still thought at times that maybe he had been kidnapped but this line of thinking was soon dropped.  Dad went back to his previous pattern of functioning with some days being able to think more clearly than others. 

a horse pulling a wagon [which is not in the photo] with the caption w.t.f. on a background of cirrus clouds in the sky
Yeah, I took the pic.  If you want it, right-click to save to your computer.

To whoever was responsible for the oversight with Dad's dementia drug during his hospitalization, I can only say w.t.f.   

sapphoq on life