Tim writing this time:
Sorry the blog updates are less frequent lately. It seems we’ve entered a slower, less
drama-filled season of this ordeal since moving Dad to LTAC on Easter
weekend. That said, the daily challenges
are just as real and relentless as before. With the semester finally wrapping up, I was able to make a
quick trip to Cincinnati yesterday and today to see Dad and give Mom a little
relief. Relief is spelled: E-V-Y
and E-M-M-A, both of whom tagged along and spent the afternoon with their Nana, getting her to take them to the zoo, out for ice cream, and snuggling in for a
tea party before bedtime at the condo.
A double-dose of “Vitamin E” for Mom! Even though Mom spoiled the girls, I think she got more good
out of it than they did!
Meanwhile, I was able to spend some time with Dad. Overall, he is doing better it seems,
though the changes are coming very slowly and slightly. When we last saw him two weeks ago, he
could open his eyes a little (mostly just his right one) and slightly shake his
head left/right, as well as his continued ability to move his jaw to
communicate. As of now he is able
to open both of his eyes almost fully, though closing all the way is hard. His head can shake back and forth much
stronger now, especially when he’s emphatically trying to say, “No!” about
something. He is also able to nod
up and down slightly. He continues
to improve his weaning off the vent, and his heart rate and blood pressure have
stabilized – so hopefully this means his autonomic functions are returning to
normal.
Perhaps more encouraging, is that even with these slight
improvements, Dad is able to be more of a “participant” in this process. He is able to communicate clearly when
he does or does not want something from the medical staff – for example,
letting them know that he did not want a new picc line due to previous battles
with infections through that line, but rather, preferred an new, extended IV
option that can last up to 29 days (less daily pokes!). Even though he is having a very hard
time sleeping at night, he was also able to deny an increase on his sleeping
aid since he doesn’t like to be knocked out at night. These feel like small things, but if he is asked, he is able
to give direction to his caretakers and be more involved in decisions about his
care.
Of course, he needs to be asked – which we find is a
constant thing we have to remind various medical staff to do. Because he has no ability to call the
nurse for help, or after being re-positioned say something like, “Hey, this new
position is more uncomfortable than before!”, he is at the mercy of whoever is
caring for him to stop and ask, “Are you OK? Do you need anything else?” Most of his caretakers seem to be on the ball. However, we are still amazed to find
various staff who do not address his basic comfort needs, which can sometimes
lead to several hours of unresolved pain or discomfort in the middle of the
night.
Please note:
the staff at Drake LTAC have been really great, with the majority of
them being attentive to both Dad and Mom’s needs. But until Dad gains the ability to call the nurse and speak
his needs, he’s at the mercy of not only this awful syndrome, but the varying
degrees of support of those around him as well.
On that note, I want to express again our appreciation for
everyone who has stopped by to visit and sit with Dad on the evening
shifts. I know how busy life can
be, and it means so much to us that you have carved out time to keep him
company and be an advocate for his needs.
This is still a need we have – and in an attempt to make it easier to
sign up for an evening spot, there is now a permanent link on the right side
bar of this blog which will direct you to the Lotsa Helping Hands website where
you can sign up to sit with Steve.
For those visiting with him, here are a few things to keep in mind:
- Please
don’t feel like you have to “entertain” him. He may enjoy talking, or listening to music or talk shows,
but often he just wants to rest/doze in the comfort of knowing someone is there
for him if he needs something.
- When
talking with him, try to stick to simple yes/no questions. I’ve found myself sometimes asking
“choice” questions (“Do you want me to get the nurse or help you myself?”),
which his unable to answer. The
key questions that are always good to start with are:
o Are
you in pain?
o Do
you need repositioning?
o Are
you too hot/cold?
o Do
you need the nurse?
- If
you ask him to spell out something with the alphabet system posted on the wall
above his head, realize that he gets tired and confused by this process after
about 2-3 words (especially if he has recently been given pain medication and
is drowsy). If his spelling is lost
in translation, just ask him if he wants to stop for now and try again
later. Also, he is moving his jaw
very frequently now, even when not communicating. This can make it confusing to decipher whether he is saying
“yes” or “no” to a question or letters he is spelling. Just tell him kindly that his motions
are unclear and could he concentrate on giving you a “clear yes or no” to your
question.
- When
he needs to rest, I usually just tell him that I’m sitting right by him and
that if he needs something, to just move his jaw up and down rapidly so I can
notice and respond. This works
well.
- Lastly,
if you have not seen Dad in a few weeks, be forewarned that he looks pretty
rough. With his eyes open most of
the time now, they are red and sagging.
His muscle tone is minimal and he has lost weight. Looking at the pictures on this blog
from before this syndrome hit, it’s hard to process how much this has taken a
toll on him. However, that’s still
my Dad in there and he needs us to hang with him until his strength returns…
We feel so blessed by all of you who have helped out already
and continue to show your love and support to our family. Thank you!
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