MY STORY REVISITED #136-DO YOUR FORMS
this picture i ran across this morning online
its taken from a lecture i gave on alzheimers disease in 2016
it was in the time when i was being evaluated for the biogen aducanumab study that i was eventually approved to be in
the video is about an hour long
i talked about alzheimers research that was ongoing at that time
now 6 years later
the bace inhibitor studies didnt pan out as they made things worse
the insulin nasal spray is only now getting started
the solanezumab didnt work either
the a4 study is just now finishing up and results should be available soon
the aducanumab study well we all know about that one
it got approval amongst some controversy
medicare says they will pay for only if its in a research study
in my old blog below i review the paperwork that an elder lawyer suggested
i had an old will from the mid 1990s that needed to be updated
it would be 5 years before we got ours redone
it took the pandemic and me thinking i was going to die to get ours all finished
we did all these below including a trust
the trust was mainly to save taxes on our deaths to prevent probate costs
we chose someone who does mainly elder law and whom we saw lecture several times at the alzheimers symposiums
update on biogen aduhelm or aducanumab study called embark that i am in
another infusion in two weeks
a tau pet scans in about 3 weeks
an all day memory testing in 4 weeks
a mri in about 6 weeks
so far no side effects
so far no memory issues
_________
05-01-2014
DO THESE
it doesnt really matter how old you are
you should have these things done
dont wait until its to late
then
it becomes harder and more expensive to take care of things
yesterday i went to the second annual alzheimers symposium
in temple texas
its the one that i gave a presentation to on my story with
possible alzheimers disease last year
this years focus was on the caregivers
the first presentation was given by an elder lawyer
his first topic was guardianship
you dont want to have to do this
as its expensive and the control of your or your family member is
under the control of the court system
he said avoid this if possible
the best way is to be prepared
by having all the forms and documents mentioned below
done correctly
and there will be no guardianship
you dont want some lawyer or judge having to ok checks for
you or our loved one
the younger you do all of this the better
one speaker a bioethicist from california is the caregiver for
her brother who was in a car accident and now has a head injury
without the paperwork being done ahead of time
a guardianship may have to be done
if you do all this right he said then you get to determine guardianship
do a medical power of attorney or power of attorney for health care
put one person in charge with alternative persons if that one is not
capable or able
unless i piss my wife she off royally i have her as my medical power of
attorney with my sons listed as backup
my wife she and i have had discussions about what i dont want
side bar another speaker the bioethicist showed a graph of what
physicians dont not want done if their health is terminal like with
alzheimers or cancer etc
100% said no cpr-the survival rate for cpr in these situation is 0%
most said no cpr no ventilation no dialysis no surgery
no invasive testing no feeding tube no antibiotics no iv hydration
but >90% said they wanted pain medication
the two lowest was iv hydration and antibiotics at 60%
we must know something you guys dont
after practicing for >25 years i would say 100% no to all of those
things especially cpr and ventilation
if it happens to me as i get demented i plan to come back
and haunt the heck out of whoever did it to me
now im not talking about right now as im in great health
except for that alzheimers cloud thing hanging over my head
do a hippa release form
if you havent ever got pissed off when you try to get information
on a family member you may not understand how important this
one is
he suggested to not use the one from the hospital but get one
on line that covers things better
without one you may be shut out of your spouses medical
information if they become incapacitated
do a directive to physicians or living will
make sure this thing has things like no feeding tube no cpr no ventilation
no chemotherapy etc if you become incapacitated with a terminal disease
dont let others wonder what you would want
if things get complicated or if the doctors or hospitals screw up or
if another family members doesnt agree
this and the other forms are so important in overriding their objections
do an out of hospital dnr form
he suggested to google it and use a printed out form
without this if the emt paramedics come to your home or
to the nursing home etc they might do all that stuff that drs dont
want them to do to themselves
hopefully flashing that form in front of them will stop them
do a durable power of attorney
this gives someone and he recommended picking one person
with backups if that person is not able to do it
this gives them the right to do your financial and legal stuff when
you are incapacitated
and can prevent you from having to go to court for guardianship to
do your loved ones financial and business stuff
he recommended the durable power of attorney be updated every
few years as some banks etc will not recognize one eg that is
15 years old
he also suggested a living trust but not everyone agrees with
this recommendation
this one provides another layer of protection
some of these things can be done without an attorney
but some need their input
interesting was that the attorney i used for my will etc
was at the conference since she has become more involved
with elder law
since her dad had alzheimers disease and she learned
first hand what mistakes could be made and prevented
i plan to pull out all my documents this week and review them
i know that i plan to add more specific details to my directive
to physicians or living will
i dont have an out of hospital dnr
my hippa form is not a more involved one
i am not sure if i will do a living trust
i plan to seek other counsel on that one
be sure and use forms specific for your state as each states laws
may be different
so dont wait to get all this done
wait to long
and
a local judge and lawyer will make the decisions for you
and
not your love ones
__________
i did all these except i didnt do the cpr since i feel like i right now am a good candidate for cpr
however
when my dementia worsens i want my no cpr form done and tattooed on my chest
not everyone needs a trust
if not sure consult a lawyer
dont let the state decide what happens to you and your estate
the organicgreen doctor
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