Tired

       He is tired. So tired. He closes his eyes and sings along with the choir that has come to entertain the old people. It is near the end of his life. He can feel that. Death has entered through the back door. She waits for him swishing her skirts. A breeze dances by. It tickles his sunken cheekbones. Not quite yet.

     After, he will accept a cup of punch thickened with powder so he can drink it without choking too much. He will refuse the offer of a cookie. His taste has changed. Food he used to enjoy now not so much.

     The shakiness of confusion is evident in his quiet voice. He turns to me and tells me that someone here at the home has stolen his wallet. This is a claim that he makes often. "The boss lady has your wallet in a safe so other people can't steal it," I remind him. He mutters something about social security checks. I know he is thinking about getting a part-time job and his own apartment. But he can no longer do those things. His past enjoyment and independence are now fading memories.

     "It's time for you to go now," he says gently. And I know he is tired. I take my leave, unsure as always as to whether or not he will be alive in a few more days.

                                     ~ sapphoq on life ~

Gonna Drive Away

     A couple of days after the visit where we talked about death, I was greeted with this:

"I want to renew my driver's license."

[Yes, he still has one. I reported him. They re-tested him. He passed, slept with someone, or paid off a politician. Not sure which].

"Uh, maybe in the spring. Winter's coming."

"Okay."


     I can't blame him for wanting to escape all of this dying crap. I want to just drive away sometimes too.

     Through the course of his dementia, my hope has changed. Right now, it's "I hope he dies soon in his sleep before things get much worse."

     His hope has not changed. He wants to exercise his body back to the way it used to be. He wants his brain to power up. He wants his life the way it used to be. And I can't give him any of those things.

     My dreams take me on the trains traveling around the country-- something I haven't been able to do in awhile-- we really do have a great country. My dreams take me into the backwoods with only a backpack and an old dog. My dreams take me on a warm sunny beach someplace I have never been before. My dreams take me on a book tour for one of my books. [I've written one. Once that one gets put out in e-book form, it will be time to write book number two. I used to think that I had a book in me. Now I know I've got a bunch of them kicking around in there].

     His freedom is limited now. And there's absolutely nothing I can do about that.

                                  ~ sapphoq on life ~ 

Lies

I took pictures and I altered them and I made this. Please right-click to download to your computer if you wish to save it and/or use it.

     I detest being lied to. There is no reason to lie to me about where you are when I call you. Hey, vacations are great. Long ones are wonderful. Where do you get off telling me that you can't talk because you are at work?

     The truth would have sufficed. I'm out with friends right now and I can't talk. Can you send me the info? Yeah, I would have understood that. Totally. I get that. 

     It's considered "rude" to take phone calls when entertaining. Even though a large percentage of people do it anyway, it is not cool. I tell people I need to call them back when I am with friends. So the truth would have been respected.

     Things are stressful enough when advocating for a dying parent. I visit several times a week. Until recently, I was transporting to doctor appointments. I watched as yet another mini-mental status was conducted. The results never improved. "I haven't seen her in eight months." I had no words to explain your absence. He loves us both. Now he is actively dying. Your lies roll off your tongue.

     This is not about you and it is not about me. We are losing one person. He is losing everyone. Take your drama and your lies elsewhere. I am burnt to a crisp.

                          ~ sapphoq on life

         

Pools

     One aunt and uncle had a couple of kids and a pool. It was a large above-the-ground in a square shape with a deck. The pool itself was surrounded by long timbers on the outside. I've never seen one like it before or since but I suppose other folks probably had one like it.

     They also had beds of flowers surrounded the house. I liked the pansies especially. "They seemed to be such happy flowers"-- a phrase I must have heard somewhere. I didn't think that then but it's what comes to mind now.

     Their downstairs bathroom also had fish wallpaper and a couple of fish figures on the walls.

     Later, the pool was traded out for an in-ground of the same size, shape, and depth. I preferred the old pool but never said so. Aunt and uncle seemed rather proud of the new one so I said nothing.

     I learned how to swim in a big army pool in the southern part of North Carolina. We'd gone visiting and a day at the base was a treat! I was never afraid of the water that I remember. I always could float well and swimming involved adding arm and leg movements to what I could already do.

     I was exposed to a pool at a Y during gym class in elementary school. We were bused there. I hated that. The locker rooms were not private enough. The kids were too loud. The instructor decided that I needed to learn how to breathe after every stroke of the front crawl rather than after every five or six stroked when I needed to. Because of that, I was put into the "beginner" swimmer class instead of into the more advanced class where my other classmates went and where I truly belonged. I was overly quiet and didn't advocate for myself then. Loud tears at the least, or a screaming tantrum may have gotten my message across better than my whispered short protest. My swimming did not improve during that class. I already knew how to do all sorts of things in the water contrary to what the Y staff thought. 

     Dad preferred apartment living to renting part or all of a house. [Later, he preferred owning a condo]. One of the apartments had a pool in the back. We had lots of fun there in the summer. Once my mother refused to let me take a bathing suit along. I don't know why. Dad allowed me to swim in my clothing [blue laws meant that swimsuits could not be purchased on Sundays] which was then washed and dried before I went back to my mother's. 

     At the apartment pool, I swam, floated, jumped or dove off the board, swam underwater, and perfected my side strokes. [I can swim on either side equally well]. I also learned to do headstands in the water. When not in the pool, we played Rummy 500. 

     Dad saved a little boy from drowning in the shallow section of the pool once. Even the lifeguard did not see that the toddler was in trouble. I learned that choking can be very quiet.

     Dad's days enjoying pools, lakes, and the ocean are over. His card-playing is over now too. When asked if he wanted to play Rummy 500, he shook his head and in a rare act of vulnerability acknowledged that the game would be too difficult for him now.

     Dad admitted recently to no longer being able to "keep up." 

     Dementia sucks.

                    sapphoq on life

Repetition

     Dad has been repeating himself for awhile now. Housemate's mum has just started. For a few months, she would play catch-up with conversations. A few minutes after a group of us was done discussing something, she would bring up the same thing using some of the same words. Within the last month, she has started repeating a question or a sentence several times within five minutes. Then she would act surprised that she'd already told us.

     An example:
          "My sister called me. She said she fell and sprained an ankle."
     This would be discussed. A few minutes later:
          "My sister called me. She said she fell and sprained an ankle."
     And a few more minutes later:
          "My sister called me. She said she fell and sprained an ankle."



     My dad and housemate's mum have never really cared for each other. I could imagine a conversation between the two of them.

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"


     The verdict is not in on housemate's mum yet. But the eerie repetition sounds strikingly familiar to me.

     It is not the long-term memory that suffers in dementia. It is the short-term memory, followed by an inability to create new memories. Thus, many folks with some form of dementia can tell you about their childhood but not remember what they had for breakfast.


     Dad told me the other day that soon he will not be able to talk at all anymore. His expressive aphasia has certainly gotten worse in my unprofessional unasked for opinion.

     
     Dad did not prepare me for his dementia. I suppose dementia is something that is subject to lots and lots of denial aided and abetted by any lesions that happen upon the left side of the brain.

     Dementia sucks. Don't you doubt that for a minute.

sapphoq on life

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.

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 

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 ~

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

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    

Obsession

Tomorrow is Father's Day.  We plan to take Dad out to lunch.  If he is having one of his dementia-related headaches, we will eat lunch with him at the house instead.

Last Saturday, Dad called me wanting me to visit him before Thursday [which I would have anyway] and insisting that I bring him a turquoise book that he left at my house.  He said he wants to discuss something with me.  I said okay.  I thought to myself, oh finally he wants to talk about dieing or something like that.  I could not locate the book.  I'm not even sure we have the book in our house. 

Monday I did visit Dad.  He went on for forty-five minutes about the book of old bank statements.  He said they were statements showing his earnings, that he was a high earner, that he made a ton of money every week.  [At one time he did].  He had to send copies of these statements to the headquarters weekly to show what he was earning in commissions.  Finally, I asked him what he will do with this book of bank statements once I find them.  "I'm going to bring them along to show people that I am a top earner when I apply for jobs."  Sigh.

I went to visit Dad again this past Thursday.  I still could not find the book of bank statements.  It may in fact be in a box in his closet at the adult supervised living house.  I don't know where it is.  But I am increasingly certain that the thing is not at my house.

Dad was having a headache.  "Did you find the book?" were his first words to me after a brief hello.  "No," I said.  "I am disappointed," he said heavily emphasizing every word.  He spent some time demanding that I look on top of the bookshelf in his old bedroom.  [The bookshelf has been moved].  He got short with me.  He then said he needed the book so he could get money from the headquarters.  When I inquired how this was going to occur or why, he stated that the headquarters will give him money "because it is the right thing to do."

When I called before dinner today [Saturday] in regards to plans for Father's Day tomorrow, Dad made it clear to me that I was to locate this book of bank statements.  He said "I want to go over some things with you."  I figured this meant perhaps that Dad wants me to type a letter for him to the headquarters indicating where they should send the money that he feels they should give him.  Dad doesn't say "goodbye" before he hands up anymore.  He just hangs up.  After he told me again to look for this book of bank statements, he hung up.

Dad is obsessed with money.  He believes that he has no money.  He wants to get more money.  He wants to leave us his kids money rather than pay a dentist money for a new partial plate.  He wants to find a dentist that will take "time payments."  Or rather, he wants me to locate said dentist.  He wants to get a job selling cars.  He wants to be given a demo to drive around in for selling a bunch of cars.  He wants to then move to his own apartment.

Dad does not believe that the State will seize his assets when he lands in an extended care nursing facility due to the progression of his Lewey Bodies Dementia.  He used to have long-term care insurance.  He cancelled it.

Dad wants to work.  But he is barely able to keep himself upright.  He staggers.  He sleeps more.  His physical condition and his mental state are deteriorating. 

I am not looking forward to tomorrow.  I hope that he does not get nasty when once again I show up without his turquoise book of old bank statements.  I just want to have a peaceful visit with my father.  I love my dad. 

This may be the last Father's Day that we will have together.  Or even if it isn't, this time next year he will be in even worse shape than he is now.  Dementia sucks.  It really and truly does.

sapphoq on life        

Haircut

Dad called me Saturday night.  He wanted me to bring a turquoise book of papers that are his.  This was what I think he wanted as his speech was a bit mumbled.  Dad asked, "Are you coming before Thursday?  I want to go over some papers with you."

So I looked for the papers which I was pretty sure we didn't have.  I do have his burial suit here, but he took all of his records with him when he moved.

I went to visit this morning.  I told Dad I couldn't find the papers.  "They are on top of the bookshelf in my bedroom," he told me.  I said I would look again.  He went on about these papers for some time.  He said they were copies of statements that he used to have to send to headquarters [when he was working some years back] and he was a top earner.  It occurred to me to ask him what he was going to do with these papers.  "I'm going to take them with me when I apply for jobs," he said without missing a beat.

Dementia sucks.  

He is falling apart physically.  He does not walk.  He lurches.  His short-term memory is failing.  His brain is turning to mush.  And he still wants to work.

He can't work.  He is beyond working and has been medically incapable of working for quite some time now.  Not even volunteer work [which well-meaning people have suggested].

There is a new hair stylist who comes to the house now.  I don't know what happened to the old one.  Dad's haircut looks really nice.  Feathery and not the kind of haircut that is stereotypical of the demented.  So there is that.    

Confabulation

Confabulation in dementias [and several other neurological conditions as well] is the tendency of the brain to fill in the gaps for a faltering memory.  Last week, Dad's was in full bloom.  We went to the neurology clinic at the V.A. for a routine exam.

Dad has been extremely angry at the dentist-- specifically at the receptionist.  Several of the fake teeth had departed from his partial plate, necessitating that it be brought to the dentist office for repair.  Because the repair required welding, the broken partial and the separated "teeth" had to be sent out to the lab.  Because the whole mess had to be sent out to the lab, there was a charge of $160 dollars.  I was able to return the repaired partial to Dad four days later.  Things got dicey after that.

Dad's view on bills-- excepting his rent at assisted living-- is easily summed up by the words, "I don't owe them anything."  Occasionally for variety's sake, the words change to, "I can't afford it."  Dad's words concerning the dental bill were, "That should have been free.  I ain't paying it."  Dad's anger at the receptionist in particular has been of epic proportions.  He wants to tell me about it at length pretty much every time I see him.  Dad wants the partial to be fitted better to his mouth which translates to he wants to go to the dentist.  I have to find him a new dentist.  Although our dentist is still willing to see Dad, I can envision disaster happening.  Dad showing up at the dental office would not make for a pleasant surprise to the receptionist that he screamed at over the phone.

I prompted Dad to tell the neurodoc about the incident.  In actuality, Dad had called the dentist's office [because unfortunately some days he can dial phone numbers] about the bill.  This particular call quickly evolved into a one-sided screaming match.  Words on Dad's end of the call were things like, "I did not have the partial for four years,"  "I don't owe you that,"  "I'm not paying it," finishing with "Who are you to decide how much I have to pay?"  

In Dad's version of events to the neurodoc, it was clear that he did not remember how much the bill was for.  "Forty dollars," he told her.  He did explain that the receptionist somehow had set the price of how much he should pay.  Naturally, since I had described his anger as bordering on the psychotic range of things, Dad was perfectly calm when talking with the neurologist.

Prior to talking about his partial, I prompted Dad to tell the neurologist about his pants.  Or rather, his imposter pants.  Because the pants that Dad insists upon wearing every day are in actuality his pants which were purchased for him several years ago.  Dad explained to the neurodoc why he insists upon wearing only the one singular pair of pants which are ripped and now growing a hole in a most inappropriate place.  "A man that used to live at the home stole my pants.  He died.  The staff gave me his pants.  His pants are too big for me.  This was the guy that died before the last guy who died."  The neurodoc had to check, "Does he have other pants?" she asked me.  "Oh yes."  Not only that, they are still decent looking from lack of constant wear.  Dementia-- what a wonderful drug. 

My dad was always a sharp dresser.  He still tries to be.  But things don't work out that way anymore.  It takes more effort now for Dad to remember how to do things.  His co-ordination is not what it used to be.  Thus, achieving the well put together look now escapes him.  And he absolutely will not ask for help with anything at all.

I cannot explain why Dad will only wear that one pair of ripped and torn pair of pants.  Nor why he will only wear a particular pair of shoes.  [I am glad that the assisted living place does laundry twice a day].  Just as soon as his money situation is straightened out, I am going to buy Dad five or six pairs of pants of the exact same make, model, and color of his current favored pair.  Then his favored pair will be-- ahem-- mysteriously shredded beyond repair in the washing machine.  It's called therapeutic lying on the forums.  Much as I despise dishonesty, dementia sometimes insists upon it. 

But I can explain the filling in of failing memory with random untrue snatches of supposes.  Confabulation is what happens when a demented brain is confronted with a blind spot in a narration.  The perceptually impaired brain learns to fill in the missing visual component much like the demented brain manufactures new quasi-memories that never happened.  There is a blankness.  The brain says to itself, "Oh crap.  We can't have that."  And boom.  Bits of visual information rearranges itself.  Or bits of new versions of events emerge.  Dad believes the confabulations.  The essence of confabulation is that it is not conscious lying.  And that is the hell of it all.

No one can argue a demented person out of their confabulations.  It does not work.  It may be almost cruel to try.  Confabulation sucks for the family and friends who remember the demented person before they "got this way."  As badly as all of this has sucked for me, my dad is the one whose functioning continues to spiral downwards until a guaranteed death. 

After the neurology appointment, it was time to leave confabulation and Dad's failing brain alone for a time.  Dad and I went to a small diner.  We sat and ate a leisurely lunch.  Dad enjoyed his chili.  I tasted it.  I said, "This reminds me of the chili we used to get at the ski lodges."  Dad smiled then.  "Yes it does."    

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