"Today I am a horse. Dear God,
did you have to make my poor old horse lose his shoe just before the Sabbath?
That wasn't nice. It's enough you pick on me, Tevye, bless me with five
daughters, a life of poverty. What have you got against my horse? Sometimes I
think that when things are too quiet up there, You say to Yourself, `Let's see,
what kind of mischief can I play on my friend Tevye?'" (Fiddler on the
Roof," book by Joseph Stein and music by Jerry Bock, lyrics by Sheldon
Harnick. Pocket Books, 1965, p. 23).
My wife of some twenty-seven plus years, bless her heart,
has secondary progressive multiple sclerosis. She is no longer able to walk, nor work, has
difficulty at times speaking with fluidity and recalling words that she wants
to say. She is not in complete control
of her bladder, and is frequently struck by the kind of fatigue that sneaks up
on you, requiring you to find a nearby spot to lie down and take a nap. These days, she spends a lot of time in her
bed.
Her disease has progressed over the years, a progression that
was accelerated by a traumatic event and very stressful period in our lives: when
our two young boys were taken away for almost ten months on allegations of
child abuse, allegations that were ultimately dismissed by a court after an
additional nine months had passed.
I have documented that story in past Blogposts here. That’s not my topic today. Today, I am a horse.
I’m feeling a little sorry for myself, and what’s worse, I’m
also feeling a little guilty for feeling that way.
I’m not the one with MS, and unlike Tevye, it’s not that my
horse that has lost his shoe. My
distress is because this week, my wife’s live-in caregiver lost her ability to care
for my wife, let alone take care of herself.
Something happened, and what happened caused me to have to take care of both
of them, with a little help from my eldest son.
To add one more complexity, I not operating at 100% myself: I’m a candidate for hip replacement surgery
and am hobbling about with the pain that goes along with that condition.
Our caregiver only moved in two months ago, and since my job
of the past five months[1]
is more than thirty miles from home, I really needed someone to be home with my
wife while I was at work. Because our eldest
son lives and sometimes works nearby, he had been able to come by to rescue his
mom on a couple of occasions -- when she’d ended up on the bedroom floor after unsuccessful
attempts to transfer back to bed from her bedside commode. On a few of other occasions, she’d had to
grab a blanket and pillows from the bed and make herself as comfortable as
possible on the rug until I could get home to assist her.
On Monday, our caregiver began to experience an attack of Hemiplegic Migraine, a condition that
was first diagnosed by a neurologist some fourteen years ago. She suspected that the attack was brought on
by the stress of a bad experience at a county medical clinic that morning, where
she was supposed to have seen a doctor about getting some prescriptions
renewed, but at which things had gone awry.
As the day progressed her condition worsened, so much so that late in
the afternoon my wife called to ask me to come home earlier than usual to take
our caregiver to the Emergency Room.
When I got home and walked into our bedroom, I found my wife
and our caregiver in our room. Our
caregiver was lying on her side on my half of the bed, her right hand covering her
eyes, in obvious discomfort. Her left
arm was paralyzed and it lay limp at her side.
I helped her get up, and she barely made it to the car, as her legs were
in tremor. Her eyesight was very poor;
she was hypersensitive to sound; she was dizzy and nauseous, and it looked to
me like she was having a stroke. But she
insisted that that was not the case. She
said that the last time she had experienced an episode of Hemiplegic Migraine was a few years ago, possibly triggered by a
head injury sustained in a car accident.
I pulled up to the entrance of the Emergency Room at about
8:30 pm, went inside and requested a wheelchair. An attendant brought one out and we managed to
get our caregiver out of the car and into the chair. The attendant asked what was happening, and she
told the attendant the name of her condition: Hemiplegic Migraine. She was
wheeled inside, and by the time I moved my car and went back in, she had already
been taken to Triage. Like I said, it
looked like a stroke, so they didn’t waste any time.
After a few minutes, they let me in and I was directed to
Bed #1. I stood out of the way of
everyone and watched as a nurse administered a neurological screening exam. The Emergency Physician had already seen her
and ordered a CT scan. They were
monitoring her vitals, she had an IV through which she had already received pain
medication and they were about to give her some more. Unable to move her left arm, both of her legs
were in tremor, and the overhead light and loud voices were very uncomfortable
for her. She thought that she might have
to vomit.
I asked if they could turn off the overhead light and they
did, utilizing indirect lighting. An
x-ray tech came in to take a chest x-ray while she was in bed, during which I
left the room. When I went back in, she
told me that she had felt dehydrated earlier in the day, and asked the nurse if
she could have some ice chips. Because of
her nausea, though, they gave her swabs to put in her mouth instead.
After the second dose of pain medication, she began to itch,
so they gave her some Benadryl for that.
When she was about to go for the CT scan, she commented to
me that it the results of the scan would probably be negative, as they had been
during previous episodes. I asked the
nurse how long it might take for Radiology to provide the results of the CT
scan: probably about thirty minutes. I continued
to wait, asking our caregiver a few questions and getting a few answers,
although it was not easy for her to talk or to compose her thoughts. She did tell me this: most of the people who treated her for these
episodes in the past as well as on this occasion were not familiar with Hemiplegic Migraine; she asked them if
they would look it up, as it was rare and the diagnosis fourteen years earlier
had taken quite some time. She told me
that she had experienced less than a handful of episodes of the condition since
that first diagnosis. The most recent episode,
the one after the car accident, had resulted in her being hospitalized for
about a week.
I called home to speak with my wife, who was hungry for dinner,
so I decided to make a quick trip home. I heated up some leftovers for each of us,
then returned to the ER. The CT results had
just come in and our caregiver/patient was right: they were negative. The decision was made to admit her, and a room
was readied. At about 11:30pm, I
accompanied her as they wheeled her up to her room.
Waiting in the hallway while the attendants got her settled,
I went back into her room to ask if there was anything I could bring for her from
home, but she was pretty out of it and asked if I could call in the
morning. I wished her well and left for
the night.
Just before I went to sleep, I did a GOOGLE search on Hemiplegic Migraine, got several hits,
and read one article. The term was well
documented.
After getting ready for work the next morning, I gave my
wife breakfast, and packed her lunch and snack in our Ben & Jerry’s cooler,
which I left on our bed for her. I fed
the dogs and called the hospital to see what I could bring for our
caregiver. She only wanted a few items,
so I collected them, packed my own lunch and left the house.
It took me about twenty minutes to get to the hospital. While walking from the parking lot toward the
main entrance, I noticed a tall man approaching the entrance from the opposite side
of the driveway, and as he walked, he was talking on his cell phone and putting
on his white coat. It turned out that he
was the neurologist on his way to visit our caregiver/patient, so I introduced
myself and we rode the elevator together.
I told him what she’d told me about her history, as well as the name of
the neurologist who had diagnosed her migraine variant fourteen years before.
I watched as he administered a neurology screening exam,
during which our caregiver/patient mentioned that she had tried to get in to
see a local neurologist, one who had seen her in the past, and she told him the
other neurologist’s name. Unfortunately,
that neurologist was no longer accepting new patients. But she was in luck, he replied, because her
former neurologist was now on staff with that same hospital. I left the room for a few minutes so they
could speak privately. When he left, I
went back in and she told me that she thought that she was going to be
discharged. That frightened her, because
on a past occasion, the tremors she was experiencing had progressed into
convulsions and she didn’t want that to happen again.
A few minutes later, another doctor, a hospitalist,
came in and spoke with her. I mentioned
to the hospitalist that it would be most helpful if she could speak with the caregiver/patient’s
former neurologist who was now on staff, asking about our caregiver’s
history. She said that she would do so, and
I left for work.
I spoke with my wife during the day, neither of us knowing
what we should do. On my way home from
work, I was at a market picking up some fruit and vegetables when my phone
rang. It was our caregiver. The hospital was discharging her and she asked
if I could come pick her up. I asked her
about her condition, and she said that it was much the same. I told her that I would be there in an hour.
I arrived a few minutes early and went up to her room. She told me that the hospitalist had been
very dismissive of her condition. She’d
told our caregiver that she thought her symptoms were psychosomatic, and that
there was nothing further that could be done for her neurologically in the
hospital. An attendant wheeled her
outside in a wheelchair and I took her home.
The hospital did issue her a prescription for some pain medication to fill
at an outside pharmacy. She was just
going to have to ride out the rest of the episode on her own at home.
In that condition, she was of no use as a caregiver to my
wife or of any assistance to me as backup.
We were going to have to ride it out, too. She could barely able to get up and walk to
the bathroom, but at least she could do that much.
On Wednesday night, I fixed dinner for my wife and asked our
caregiver if she would like some of what I had prepared. She accepted it and I took that as a good
sign.
The following morning, I had her prescription filled for her. By Thursday evening, she had some limited use
of her left arm and she was slowly improving.
I expected that it would take some time for her to recover from this
episode. We have not been able to talk much
yet, as she was not really capable of doing so.
I hope that by Saturday afternoon, we will be able to have a
conversation, and I have invited our eldest son to join us. My wife is convinced that our caregiver will
not be able to provide her with the care she needs. She may well be right. I need help.
I cannot possibly shoulder the load I’ve had to carry this week for very
long.
As Tevye would likely say, “It isn’t easy.”
[1] In
November, 2011, I lost my job of the previous six and one-half years in a
massive lay-off affecting 175 people.
Since that time, I have found only temporary employment and have had two
extended periods of unemployment. Thus,
I have been my wife’s full-time caregiver for the lion’s share of the past two
years. In May of this year, I obtained
my most recent temporary position, one that holds promise of becoming a
full-time salaried job. Thus, I was very
glad when two months ago, we found a day-time caregiver for my wife. When this week’s episode took place, however,
I found it very demoralizing. Enough with the celestial mischief, already.
Here's what it's about for me: in April of 1999, my wife and I had our two sons taken from their elementary school one afternoon. They were first placed into a group home and then into foster care. It never should have happened.
I very much appreciate the incisiveness of the criticism -- much deserved -- leveled by Mssrs. Heimpel and Wexler against the Times' reporting in the recent series of articles by Mr. Therolf. Celeste Fremon is correct when she identifies the straw man arguments constructed by David Lauter in his response. I hope that Mr. Lauter will get past them, make his way into a more forthright self-examination of the Times' reportage and continue this very important conversation.
The underlying fuss, beyond the reportage, is about a curious system of financial incentive/disincentive, imposed upon counties by federal policy that reimburses counties ONLY for the costs of out-of-home placement of children, even though other alternatives may be more effective, less costly and most importantly, less damaging and traumatic for children and families.
Presently Los Angeles County, along with Alameda County and the State of Florida, have been granted waivers from compliance with that federal policy, and are able to use federal reimbursement dollars in the best interests of child welfare. That waiver is making a very positive difference in Florida outcomes, and under the right child welfare agency leadership, it can do the same in Los Angeles County.
Though we were lucky in the foster care department (incredibly supportive family friends volunteered and were approved to act as our sons' foster parents, although we were not allowed contact with them absent a monitor for many months), our children, my wife, who has multiple sclerosis and whose condition worsened considerably under the stress of the separation, and I endured much emotional trauma. Our family nightmare, which took place in Orange and not LA County, ended when we were reunited ten and one-half months after that horrible day in April, 2009.
Our lives were forever changed -- and not in a good way -- because of an institutional bias toward removing children from their homes that prevails in most places in this country under the current child welfare funding scheme. Far too many families experience similar treatment. THAT's what the fuss is all about.
Yes, child abuse and neglect are real. And yes, child protective services are a necessary thing. However, they need not be the necessary evil which they far too often are. If we are going to provide those services, let's fund them in ways that eliminate institutional bias, give children what is best for their welfare, help deserving families that need help, and improve outcomes, both social and fiscal. Let's get child protection right. * * * * * *