Asking for a friend

 How does one separate the behaviors that come with advance stage Parkinson’s from the person with the disease?  Are they not one in the same?  I remember when my dad was on the skids and my mom said she didn't know if she could continue living with him.  He was saying some pretty horrible things to her.  I counseled her with "that's not Dad talking, that's the disease.  He loves you and cares deeply for you."  Oh.  Ok then.

The duopa pump is not anywhere near as great as expected.  The only "good" day my Dad got from the pump was the first day.  And my guess it is because he expected it to do something.  Since then he has had periods of stiffness and latency in cognitive response followed by periods of the wiggles that come with parkinsons.  I don't think this the golden ticket my dad thought it was going to be.  

We went back to the neurologist because he is either wiggly or stiff.  The dosages on the pump was to be adjusted in increments of .3mg over an hour.  He was "too wiggly" from the doctors perspective and "too stiff" from my Dad's perspective.  The end result of another 6 hour appointment was increasing his dosage by .1mg.  That's point 1mg.   And I'm supposed to believe that .1 is going to make a difference?

When I dropped him off at his residence I asked the staff how they think he's doing.  The think he's transformed and not near as rigid as he was.  I asked about cognitively - the response was "we see gaps."  Was also informed he continues going into the common space wearing his 'underwear' and he doesn't shut the door when he goes to the bathroom.  

Was also informed that the care provider got him some coffee icecream like he had the other day they went to the icecream shop.  He looks at the lady and says "I don't like coffee."  That's weird.  "What kind of icecream did you have when we went out together?"  "I don't know..." WTH?

My Dad used to have gigantic muscles in his calves.  Now he has none - It looks like bone.  He used to have strong quads and hamstrings.  Not so much anymore.  His arms have the tone of an aged woman with a layer of insulation between the bone and his skin.

I don't know what to do with him.  I am not seeing any measurable improvement.  The only thing I've seen over the last two years is decline and it's accelerated since my mom died and it is accelerating more quickly since he moved out of the brookedale into the starwood.

Another thing - he decided he was going to automate his charting of how he is feeling with the duopa pump.  I saw him on Friday and he showed me what he was working on.  It was incomplete.  I asked him if he wanted any help with it.  He said he was still working on it.  When I picked him up today he was putting the final touches on his masterpiece.  He gave it to the doctor and she was asking him questions about it.  He couldn't answer the questions confidently.  At one point he just said "it's on there.  Whatever it says."  Then she reviewed some of the entries in his chart.  I told the doctor he sent me messages on those days, and read to her what he sent to me.  There was no alignment in any of it.  The doctor made an adjustment and stepped out.

I exited with her to continue to conversation about his cognition.  She did not have any confidence in his chart.  I told her that his cognitive responses have been pretty bad since Friday and the way he is now is par for the course as he's been for the last 1.5-2 years.

I stepped back into the room and sat with him and asked him if his chart was accurate or if it is made up to have something to show her.  He said "I think it's accurate."  It doesn't match anything from the conversations we've had over the last couple days.

Someone will be calling me to schedule his cognitive assessment.  The doc said we should plan on a three hour appointment.  I'm gonna go out on a limb and say he may be able to fake it for 15-30 minutes  but there's no way he is going to be able to have high engagement over 3 hours.

So now I'm trying to decide how to proceed.  Do we keep trying various treatments and having adjustments made to his pump or do we just put him on auto pilot and manage his situation for comfort at end of life?  Why are we doing all this if there is minimal to no improvement in his symptoms?    

The body may be able to last beyond 80 years old.  But the examples I have seen and continue seeing tell me the human mind is not designed to function as intended beyond 80 years on this planet.  What we are doing by extending life is an injustice to maintaining anything recognizable as quality of life.

I guess the course of action now is to monitor his weight.  If he continues to decline, we know where we stand.  There was an article I read pointing to him being inside of 12 months until expiring.

Being a caregiver is hard.  And I'm not doing it full time.  But it feels like a full time job.  And it is affecting our relationship and it is taking it's toll on me mentally.  Neal Shah has quite a few insights into care giving and it's toll on the care giver and the relationship with the person in decline as well as other family members.  That's all fine and dandy.  But how do I care for him as he declines and it doesn't affect me?  How do I cope with this in a productive way and not let it take it's toll on me emotionally or my energy.  It is draining.  If I don't do it, who will?  

We were together for 6+ hours today.  After exchanging pleasantries there was little to no conversation between us except how are you feeling?  How is the hamburger?  Do you feel any different?  

At least when my Mom was on decline I could have a quick conversation exchanging pleasantries and then continue having a normal conversation with my Dad.  When I visit him, there's no one else left to have a normal conversation with when I visit him.  Unless it is with a staff member get a run down of what they see or don't see and a progress report of his care.  Aside from that...  not much to say.  

I don't know of any employer that would put up with the last 3 months of things that come up when caring for an elderly parent with parkinson's and parkinson's dementia.  Too many things interfering with being able to have a consistent availability.  Dealing with surgeries, multiple appointments, getting his taxes done, etc - all these tasks take time.  And the time these things come up is M-F from 0900-1700.  Its not a weekend activity.  

How do I shake the funk that comes with all of this? 

 

Pope Lenny

 Pope Lenny says the planet is ruled by a group of tyrants. Probably referring to Trump and  Bibo. What about xi jon ping?

What about mumdumi, Tim Apple, Howard Schulz, Jamie Diamond and the other elite ceos and c-suite executives?  Or the clown mayors of Chicago, Boston and Los Angeles?

They do more to suppress people. Most people in power suppress instead of enable. 

Life on the Edge

Apparently what I write is mean and controversial.  My blog was temporarily suspended due to someone reporting it as either spam or hate speech.  Unhappy when I found this information as I've got three years of my life documented on here.  I appealed and the powers that be reinstated it.  Apparently opinions are offensive.  However, my opinions are based on personal experience.  So I don't know where the disconnect is.  Maybe I should be like every other person talking about other cultures and their quirks and features by starting each sentence containing a controversial noun, verb or adjective and preface it with the word "allegedly."  Whatever.  So, my thoughts ride the line between what is acceptable and what is unacceptable according to the googler.  I occasionally put a finger over the line.  Shame on me.

Today my Dad had the follow up to have the parkinson's medication titrated.  This appointment was scheduled for 90 minutes and we ended up being at the office for 7 hours.  They set the pump up and made a handful of adjustments after hourly observations.  If today's results are an indicator of efficacy for treatment, my dad will benefit from the duopa medication delivery system.  An additional drug was added to his regiment meant to slow cognitive decline/dementia/alzheimers.  I had to speak with the doctor privately because having the conversation in front of my dad would have been met with denial and everything is fine.  Everything is not fine.  

One of the cognitive assessments they gave him was to count backwards from 20 with your eyes closed.  He botched it.  It jolted the reality that he does have parkinson's dementia - even though he will vehemently deny it.  He is being scheduled for an in depth cognoscopy for a future date. 

I was giving my sister a briefing of the day... and my report to her was, "For the first time in years I saw Dad with Parkinson's instead of seeing Parkinson's with Dad."  The first time I've seen him smile or heard him laugh in 2 years.  Pretty amazing.  Hearing him belly laugh as I filled up dead time with tales from the auto parts store was a treat.  He's not a rigid pile of human flesh.  That's what he looked like for the last two years.  I saw my Dad for the first time in years.  A gold star day to treasure.  Too bad there wasn't anything like this for my mom.

 Fingers crossed he continues responding well to the medication. 

 

Mf government

Making it okay for oil refineries to produce E15 gas under the guise of reducing pricing spikes? The government has just legislated the legal destruction of the internal combustion engine by producing gas that ruins it. Think of it as BH Obamas cash for klunkers program that resulted in the government sponsored mass scale destruction of reliable cars in favor of new, inferior engine technology that is documented as being more complex, more expensive and less reliable over the long haul than the engines they replaced. Not one single citizen voted for this. The administration just does this  Lee Zeldin in an asshole.  A wolf in sheep’s clothing  

These pieces of shit are actively destroying transportation needed in society.  Communists bastards  

 The government destroys everything they touch. Bureaucrats should be destroyed.

 Fuck the government, the enviroterrorists and the EPA.  Burn it to the ground. 

Alzheimer’s reduction

They say doubling up on the recommended dosage of flu vaccine might reduce chances of getting Alzheimer’s by up to 50%. What other kinds of nonsense are being used to get people to take more vaccine injections? There’s also a chance taking a double dose of flu vaccine has no effect on the chances of getting Alzheimer’s.

Zooran

Zooran implements unpopular destructive policies with a smile on his face and a tone of optimism in his voice. Reminds me of BH Obama. Both dogs are dangerous.

Jihad. Caliphate. Allahu akbar. Taqiyya.

These are not words of people wanting to integrate. They are words of people wanting to deceive , conquer and dominate. Ladies - Grab your burka and wear a chastity belt to keep these monsters from mutilating women. What looks peaceful on the surface is barbaric compliance and a will to patiently play a chess game meant for eventual Islamic domination through any means possible. How else do you explain 80% reliance on government assistance, the building of numerous mosques, the building of Muslim exclusive communities, the infiltration into the higher levels of government and a calling for prayer being broadcast on systems meant for use during natural disasters? How else do you explain a group of people refusing to assimilate in a new country while clinging to the ways of the world they left? En mass these people turn everything they touch into a backwards third world shithole. They do not believe in equal rights. They fundamentally believe in an outdated caste system driven by male dominance of their own kind. They are animals.