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    

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 mine.  The 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

      

              

     

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 thinking.  Dad 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. 

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 

Love Without gods

"God is love" starts out a verse from first John that I remember from my jesus freak days.  It had a hold on me this love thing.  "Love one another."  "The greatest of these is love."  Love, love, love.  Something about it appealed to the hippie dippy innards of my fundy soul.  Feel the love.  I wasn't feeling it.  I didn't fit in.  As usual.

Like an artist lacking the correct audience, my gifts and talents went unappreciated.  I hadn't figured out yet that when the organization becomes unsupportive, it's time to leave the organization.  I sat but there was no shat.  Still, I remained on the pot.  Hoping.  Hoping I would feel the love.  Hoping that the prayer-spells would work.  I didn't blend in.  I was a streak of raucous hilarity in a funeral home.  I was stifled.

The other day, someone asked "If you don't believe in any gods, then what is love?"  I recognized the supposition behind the question-- If god is love, then what is not-god.  And the unexpressed assumption-- without god, there is no love.  I had thought those very things once upon a time myself.

Love is an emotion.  It does not require being anything else.  Sure, some stuff can evolve alongside of love-- commitment, sexual things, admiration, respect, friendship.  All of that stuff is not required.  Love is an emotion.  And that is enough.

sapphoq on life   

Superstitions

Mum's side of the family wrapped itself around superstition like a warm blanket on a chilly night.  I grew up listening to my grandmother reading our horoscopes to us over the phone and my aunt telling fortunes with playing cards.  Everyone was a believer in dreams, cards, astrology, crystal ball gazing, palmistry-- you name it and at least one of us believed it.  I taught myself how to do my own natal chart using the books laying around my grand's living room, read Edgar Cayce quite young and some of the Seth books, was familiar [in principle anyways] with channeling and ghosties and all manner of spooks.  Two relatives saw a disembodied spirit of a woman down the cellar at the same time-- no problem.  Another one wore an Italian horn around the neck-- I knew the finger signs for it and what it meant, when to invoke it, and how to "jinx" others at will.  The psychotic psychic fair carnivale atmosphere blended right in with the house active alcoholics, child abuse, and a standard version of a major religion.

I began with fits and starts to break away from all of these things in my adolescence.  Much to the horror of my mother, I traded in my childhood religion for various shades of fundamentalism-- all of which was quite against the "evils" of fortune-telling.  I discarded that and returned to embracing the grip that superstitions had on me.  As a young adult, I tried bunches of non-christian theologies and polytheisms.  In the midst of non-new age witchery, I again jettisoned some of the errant nonsense I'd be taught in my youth.  The astrology went first.  The rest of it followed.  Then I found that the superstitions of my youth were also intimately involved with [other peoples'] paganism.  I tried being a "cultural" pagan without any religious beliefs.  I said I was a cultural pagan but secretly I was hoping that those sessions of raising energy and the rest did something.  I had some run-ins with various representatives from the witch/new age/wiccan/pagan/heathen/ groups around me both face-to-face and on-line.  It all blew apart and became too stupid and too hard to maintain.  I defected. 

I answered the question, "How's that cultural pagan thing working out for you" with a heart-felt "Not too well at all."  I became an atheist.  My brain was relieved.  I no longer had to get it to assume awkward twisting intellectually-dishonest positions in order to endeavor to blend in even a little bit with the folks around me.  I became more of my true self.

When I was in the throes of pentecostal-ism, one of the mantras that we used was the bullshit lie that "It takes more faith to believe in evolution than it does to believe in [Genesis] creation."  My schooling, particularly science classes, should have left me better equipped than that.  But it didn't.  It was the very earliest days of Unintelligible Design.  The biology teacher was saying things like "the seven days in Genesis is equal to the seven ages" in an effort to counteract our [there were several of us Jesus fags] extreme fundamentalism.  I didn't know that evolution was not something to be believed.  Properly, evolution is a theory that one accepts in part or in totality or not at all.  I didn't even know how to find evidence, never mind evaluate it.  I learned some of those skills as I veered deeper into an atheist's worldview.  I am still learning.

My dad witnessed all of the changes I was going through.  I remember he told me a story.  It went like this:  A woman would never allow her kids to throw their friends' coats on the bed.  One day one of her kids thought to ask why.  "Because that is what my mother did," she replied.  So the kid went off to ask grandmother.  Grandmother said, "Your mother's little friends had lice."  Dad then explained to me carefully about how superstitions come into being. I kind of got it, but not enough to be able to examine the legacy of crap I was handed from mum's family.  Later on, I heard another version of the same story involving cutting off the ends of a roast before putting it into the oven.

I think there is supposed to be some kind of cutesy ending or witty moral but I don't have one.  I've found that critical thinking skills are crucial to guarding against gullibility.  And I just keep on learning.  Or, next time you cut the ends off of your roast before putting it into the oven, go ask your mother and grandmother why.  Traditions get passed down and risk becoming superstitions when the sensible reasons for our actions fade.  Or, now through the agent of my dad's dementia, his own head is filled with errant nonsense and it is of the variety that I cannot penetrate.  Or-- oh screw it.