Soft sky
nipntuk
believe I've come this far - so many mornings not that long ago when this would
have been *bedtime* for me. I don't seem to sleep much at all lately - always
attuned to the sounds coming from a room three floors below.
Mr. L. is now being watched constantly by little cameras perched around the
house. Nifty little things - they see in the dark, controlled by a little
hand-held video monitor with a joystick that lets them pan in nearly 360
degrees. Sensitive little microphones pick up the sounds of Mr. L.'s finger
sucking and every little moan and snuffle. I "sleep" with the monitor next to my
pillow, as troubled by the sounds I don't hear as by those I do.
I try to get in my best REM in the hours between 11 and 3, when Mr. L. seems
most settled. About two out of three nights he makes it through without much
drama, but the others he seems tormented - fighting with his covers, trying to
walk around in the dark, ending up on the floor crying like a baby if I don't
intercept him first. He's now in Depends - I'm able to give Frank any tips need,
might need, such as a little extra tape around the legs to prevent wicking....
(just kidding...)
NYE I asked a very trusted family friend to come sit with Mr. L and the guys
while Deb and I took in 'Avatar' (LOVED IT!). My friend arrived to find Mr. L.
and I sitting together on the floor of the dining room, Mr. L. screaming his
lungs out for reasons which we can only guess at. Half and hour, this little
melt-down went on. The one previous to this, he went off in the Doctor's office
- impressing her with his pugilistic prowess and incredible endurance, given how
frail he seems otherwise.
These outbursts are inexplicable - like a tantrum brought on with no clear
antecedent, inconsolable crying followed by trashing and screaming that would
leave most of us completely spent after only a few minutes. But each one seems
to go on longer, giving me an ultimate workout as I try to wrap him safely from
behind, avoiding his head butts as best I can while whispering reassurance into
his oblivious ears. He must be terrified - he must be in agony. It just kills me.
Back to the ER at the Neurologist's urging on Saturday - another several hours
spent trying to get a clear CT scan, which ultimately uncovers nothing but the
steady atrophy we already know too well.
"Maybe medication changes" was the Attending's best guess.
Yup. Maybe that.
Since the time of his second seizure, he has been unable to walk without help,
unable to dress himself, feed himself or attend to the simplest task for more
than a few minutes at a time. He's been tearful, infantile, disoriented and at
times highly agitated. I can only hope that these losses might be recoverable -
at least for a little while. If not, then we move onward with what we have.
Yesterday his Program Manager from the agency returned from her maternity leave.
We talked about my upcoming weekend trip to retrieve my RV from Santa Clarita,
where it's had a new engine installed. I am so looking forward to a weekend on
the road - a blessed break from everything!
Deb's gotten certified to be the backup Provider in my absence, though she is
not really cut from Provider's cloth. She's understandably uneasy about meeting
Mr. L.'s many needs - even for only a two day stretch. I've also arranged for
family and friends to stay here for backup to her backup. Never-the-less, Ms.
Program Manager wrings her hands.
On describing to the Program Manager the various challenges we've experienced
during her leave, she asked me a little incredulously, "So you're still wanting
to keep him home - not to move him...?" The question just makes me bristle.
She's pushed this issue too many times - including an ambush during a recent
Interdisciplinary Team Meeting in which she pushed hard for me to move him from
his own room to the office next to my bedroom for 'safety' reasons. It flies in
the face of everything we know about dementia - upsetting familiar routines and
tread worn paths at the time when the person can least adapt to changes. She
would have him fall down a flight of stairs he doesn't know, rather than climb
up (or have me help him up) the ones he's managed for years upon years, only to
satisfy her own sense of anxiety. And when I resisted her misguided urging, she
then pulled her trump card - suggesting that if I didn't 'care more about his
safety' that perhaps he should be placed elsewhere. I was incredulous, and
immediately began marshaling our family resources to counter this twit and her
bogus, boneheaded bullshit.
Her main contention is that Mr. L. would not be able to evacuate in case of a
fire. True enough. I'm convinced that he couldn't evacuate from *any* level of
the house, should such an unfortunate event happen. Long ago I built an exit
window into his room, jackhammering through the foundation to accomplish it. We
have smoke and CO detectors, and fire extinguishers on every level. Together
with the video monitors, I'm thinking that there aren't many more levels of
safety we can practically employ.
I put together a letter with a table showing comparative risks, and circulated
it to the team.
These are the US stats for 2008, in deaths per thousand:
home fire 1/100000
pedestrian 1/64500
homicide 1/20000
Drug Overdose 1/15000
Car crash 1/7000
Medical Accident 1/3000
I asked the team if they felt that we should refrain from taking Mr. L. in for
clinical treatment, in that his risk of death is more than 33 times greater in
the hands of a medical practitioner than at home in a fire. I asked the team if
they would like to be ripped from the arms of their family and placed with
complete strangers - likely ending up in a nursing home at the 11th hour because
someone decided that they were somehow better served by being protected from the
smallest risk (never mind that they are already dying from an incurable
disease!). The team seems well persuaded.
I asked my Ex, who knows him as well as anyone on earth, to step in and assume
guardianship so that we will have a decision maker who is 'family', rather than
'agency'. These people seem poised to swoop in on the drop of a dime, being
always more focused on papers, policies and procedures than people. Somehow I
can't envision them acceding to the dictates of their ilk in their own times of
illness or decline. Even so, we do have a couple people on the team who seem
more empathetic and reasonable, and who seem to be in a supportive and caring
frame - thank God. And it's been the Doctors who've really been the guiding
light for us, making clear that the time is coming when we should spare Mr. L.
the gauntlet of medical interventions and concern ourselves only with his
comfort. That time is too fast approaching, after our lifelong walk together.
It's heartbreaking, but it's happening, and we've long foreseen it with a mix of
acceptance and foreboding.
So when Ms Program Manager posed her question again, I felt in a much stronger
position to reply to her that "This is Mr. L.'s time for family - we will walk
him through it no matter what."
- And we will.
Sun's up. Time to roll.
Charlie M. 1958
<snip>
> So when Ms Program Manager posed her question again, I felt in a much
> stronger position to reply to her that "This is Mr. L.'s time for family
> - we will walk him through it no matter what."
> - And we will.
>
> Sun's up. Time to roll.
>
>
I'm sorry for the difficult times, Steve.
Reading your posts about Mr. L make it clear how hard it must be to
balance your role as professional caregiver with that of loving friend.
Not that I'm implying there is anything unprofessional in your treatment
of him.... only that it must be very hard to accept intervention from
outside supervisors when you clearly connect with him as a beloved
family member more than a professional charge.
nipntuk
Thanks Charlie. Long ago Mr. L. ceased to be a 'consumer'. Can't begin to tell
all the stories here, but he's been family for decades. The kinds of
professional boundaries I've managed to keep to are those which you'd strive for
in any relationship - being sure to respect rights, trying to be current in
responsibilities, a good communicator, etc..
Some things you just dispense with - political correctness, 'detachment',
prohibitions from expressions of love or affection - these are things that would
actually be inhumane over time - to never receive a hug or be told that someone
loves you. To hell with that. And you have to be able to laugh, which some
people really seem to take offense with. So it goes. If you can't find the
humor, you'll miss all the best experiences, IMO. It's how I've survived in my
field for 33 years now.
There was a time when my nine year-old daughter came out of a public pool to
face off a group of other kids who were taunting Mr. L.. She squared off her
stance and said to the dozen or so little bullies, "You wouldn't like it if
somebody treated *YOUR* brother that way!!"
Mr. L. was absolutely her brother - even as she developmentally ran circles
around him from the time she was about five. I was really proud of my kid, and
what her experiences with Mr. L. had done for her.
He's given us so many things over the decades - not the least of which was on
the day I made the decision to stop using - when he came to me as I was sobbing
on my couch, and put his arms around me and said, "It okay, Teeb... It okay..."
There's a quote I like from Steinbeck, that I've held as both a warning and a
measure:
� Where does discontent start? You are warm enough, but you shiver. You are
fed, but hunger gnaws you. You have been loved, but your yearning wanders in new
fields. And to prod all these there�s time, the bastard Time. The end of life is
now not so terribly far away � you can see it the way you see the finish line
when you come into the stretch � and your mind says �Have I worked enough? Have
I eaten enough? Have I loved enough?� All of these, of course, are the
foundation of man�s greatest curse, and perhaps his greatest glory. �What has my
life meant so far, and what can it mean in the time left to me?� And now we�re
coming to the wicked, poisoned dart: �What have I contributed to the Great
ledger? What am I worth?� And this isn�t vanity or ambition. Men seem to be born
with a debt they can never pay no matter how hard they try. It piles up ahead of
them. Man owes something to man. If he ignores the debt it poisons him, and if
he tries to make payments the debt only increases, and the quality of his gift
is the measure of the man. �
John Steinbeck, Sweet Tuesday
I do feel a certain debt, to others generally, and to Mr. L. specifically.
I understand that it'll never really be paid in full, but it's the working at it
that's made me feel like that sense of discontent ain't all that bad.
Anyway, I wanted to thank you and everybody for their kind words over the past
few weeks - I know I haven't been much at followup, but I do have my hands full
and ARAA's not a good fit for my life right now. But I do appreciate it... very
much so.
F.H.
<snip>
> Yesterday his Program Manager from the agency returned from her
> maternity leave.
> We talked about my upcoming weekend trip to retrieve my RV from Santa
> Clarita, where it's had a new engine installed. I am so looking forward
> to a weekend on the road - a blessed break from everything!
<snip>
What Charlie M. said. Also, are you flying in? Santa Clarita is about
50 miles from here. I could pick you up, do food, (my treat) visit,
deliver you to your vehicle or quarters.
Ted H
nipntuk <car...@hotmail.com> wrote:
> Charlie M. 1958 wrote:
>> On 1/5/2010 10:11 AM, nipntuk wrote:
>>>
>>> Sun's up. Time to roll.
>>
>> I'm sorry for the difficult times, Steve.
> Anyway, I wanted to thank you and everybody for their kind words
> over the past few weeks - I know I haven't been much at
> followup, but I do have my hands full and ARAA's not a good fit
> for my life right now. But I do appreciate it... very much so.
Steve, I thank you for sharing what's going on in your world.
About all I can say is my hat is off to you, and I'm with you in
the fellowship of the spirit.
--
Ted H.
Sharx35
"nipntuk" <car...@hotmail.com> wrote in message
news:X9WdnQMfi6jQ-d7W...@forethought.net...
If there was ever a good example of putting the Program into ACTION, that
post has to be it. Well done, Steve.
>
>
mikewestvale
> "nipntuk" <carp...@hotmail.com> wrote in message
My thoughts exactly, that is what this group is about despite some
interlopers silly idea of quoting text and entering stifling
discussions as to the pros and cons of recovery.
The proof is in the pudding and this is indeed tasty pudding.
I am in awe of such patience and love for another.