Before that, beginning in 2009, he lived in an assisted
living facility for older adults (he had an exemption since he was under 50
years old) for two years.
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In the last part of 2008 and early part of 2009, Robert had a
long-term stay in a hospital due to a life-threatening infection which was perilously
close to invading his brain. Robert had
been in a study at UC San Francisco for the Deep Brain Stimulator and the piece
in his chest had become infected. That
piece of the device was removed but the leads going deep into the brain
remained, in the hopes he could continue in the study. (We later learned Robert
was in the “active” group and the DBS was actually helping to control his
seizures).
The infection returned with a vengeance and since these leads
were a pipeline directly into the brain for this infection, Robert underwent
emergency surgery to remove them.
Before these events and recurring infections, Robert had lived
independently (with some family oversight and a live-in companion) for many
years.
Once he recovered from the infection (which took a couple of
months of intravenous antibiotics and a stay at a Skilled Nursing Facility), a
decision needed to be made about his living situation.
It was a difficult decision but one which had to be
made.
Caregiving is a series of decisions. How serious is the infection? Does he need to go to the ER? Where should Robert stay while he is on the
intravenous antibiotics? Will it be safe
for him to live independently again? What
Skilled Nursing Facility is the best fit for him? Should he be moved from his home an hour and
a half away to a facility closer to me and my family?
And that was in the first few months of caring for Robert.
Deep end of the pool – meet Robert’s Sister. Sink or swim – go!
The decisions have not stopped since then but I’ve become
more accustomed to fielding them. The
placement decision is one I haven’t ever been completely happy with. I did all the right things when searching for
facilities for him: created checklists, conducted interviews, had Robert visit
the facilities, but there were always one or two (or several) issues that I had
to deal with during his stays at the facilities.
I never found him the perfect home.
My husband and I thought a solution would be to turn our
garage into a bedroom for Robert. That
wasn’t as easy as it seemed (although my city is now aware they have a “Reasonable
Accommodation” code which, by law, they
have to follow).
Reluctantly, due to construction issues and costs, we gave up on that idea and I resigned myself to Robert living at a facility 40 minutes
from my house with a few people on staff I had issues with. (I’m not normally a difficult person but when
the nurse tries to change Robert’s medication schedule because it will be
easier for her, then I become quite difficult).
I decided Robert would live with us on the weekends. We didn’t have a room but we have a sofa
sleeper and a freezer full of Rocky Road ice cream. Robert enjoyed his visits (and ice cream) from
Saturday morning through Monday morning (and all holidays) and we enjoyed his
company.
Until I was informed we were allowed to have only 73 overnight visits a year (unless we paid a ridiculous amount of money to have
him stay with us). I had about 20 days
left in the year when told this in the middle of summer – and we hadn’t hit any
of the major holidays!
Super.
During this time, the issues at New Home were really piling
up. I had to find a doctor for Robert not
affiliated with New Home because their doctor was incompetent (and I do not say
that arbitrarily). The previous House
Manager didn’t order briefs timely so Robert ran out (and she called me for
assistance). Seizure logs were not
accurately kept and, worse, suspiciously looked made up when I did get
them.
Nurse Ratchet (who was amazingly still employed by New Home)
was not doing her job and neglected to prepare the proper paperwork for Robert’s
new doctor in order for him to get his medication. (She was eventually let go after three of
these incidents).
Fortunately, the floor staff were all wonderful and I could
count on them to keep me apprised of anything going on with Robert.
Management changes were made (thank you!) but I still was
not completely satisfied with Robert’s care.
I created a pros/cons list of Robert living with us. He wouldn’t have his own room but he was
comfortable enough on the weekends so that didn’t seem to matter. He needed to have his social needs met but
his Regional Center confirmed he could keep going to the same Day Program if he
lived with us. I would have to keep
track of his medications and incontinent supplies which actually terrifies me
but, as my best friend said, “You can’t do any worse than his care facility did.”
So true.
For months, my husband and I discussed Robert living with us. We reviewed the pros/cons list over and over. We discussed the idea some more.
Then I picked Robert up at New Home and, as we walked out
the door, I noticed a used brief stuck halfway inside his jeans and the other
half sticking out over the top of his waist band. I changed his pants (he was wearing his own brief
so I have no idea where the other brief came from unless it was his nighttime
brief) but he had a terrible rash from where it had been against his skin.
A limit of 73 Days. Incompetent doctor. Self-centered nurse. Running out of
supplies.
The Dirty Brief Incident.
It was too much. This
seriously put me over the edge.
My husband and I asked Robert if he would like to live with
us and he said yes. He hesitated when I
asked him if he would miss his roommate so that means, “yes” but I’ve already
asked New Home if I can contact his roommate’s mom so they can visit each
other. The Wonderful New House Manager
has offered to help care for Robert if we need her and she said we could bring
Robert to visit his old roommate.
We don’t have a definite move-in date yet but it will be
sometime in April. (I just have to make
sure his medication is transferred seamlessly).
I suggest you buy stock in whoever makes Rocky Road ice
cream!
(Now that’s how you
bury a lead).
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