A few months ago I gave
some advice to anyone experiencing Alzheimer’s as a caregiver. That being “prepare for the next steps in the
disease…..” As I write today, I can tell
you I might have been preparing for the next step, but that wasn’t good
enough. I should have been looking two or
more steps ahead. At the beginning of
October, Marcia went to the Adult Day Care of Somerset County for the first
time. “The Plan” was to have her go two
days a week to get used to going, and keep her Wednesday through Friday schedule
pretty much the same as it had been.
Over time, we could gradually increase the number of days at the Day
Center, and slowly add in home health care.
I felt this was a logical and thoughtful plan. Until…..
On October 22, Marcia had
a huge seizure, just a few minutes after my alarm went off. A week earlier, she ran out of Klonopin, the
drug she’s been taking to help manage the myoclonus tics she has been having
for quite some time. As I learned the
hard way, refilling a prescription for a controlled substance was not as easy
as refilling any other drug. The net of
it is that Marcia was off Klonopin for about a week while waiting to get the Rx
refilled and her myoclonus tics got more frequent and more severe, causing her
to fall, spill food and/or drink and startle people around her who had not been
familiar with this part of her experience with Alzheimer’s.
Even before my alarm went
off that morning, I could feel and see almost continual tics (sort of like mini
seizures). As I got out of bed, I turned
on the light in our bathroom and could see Marcia’s eyes were open. She got out of bed to go to the bathroom and
I walked with her because these tics were non-stop, one right after
another. Once in the bathroom she had a
full seizure. I was holding her when the
seizure occurred and set her down on the bathroom floor and she lost
consciousness. Call to 911 and a trip to
the ER followed. While in the ER, she
had another bigger and longer seizure.
So thankful to have been in the ER for this one. Three nights in the hospital, CT scans, an
MRI and significant doses of drugs to address the seizures and see if there was
a specific cause (stroke, hemorrhage, etc…).
While there were no signs of anything that would cause a seizure, all of
these pictures of the brain did show what one might see in an Alzheimer’s
patient (atrophy, more area of fluid than a normal brain, etc..). We could only assume that Marcia might just
be susceptible to seizures and the medication she was on was effective in
preventing them as long as she was taking it. If I hadn’t run out….
It’s been more than a
month since Marcia was released from the hospital. It took about 10 days before she was cleared
to return to the Day Center. The
hospital wouldn’t clear her because her balance was not very good. Heavy doses of medication and very little activity
were the cause of this. Her balance did
return to normal pretty quickly after leaving the hospital. But that’s about all that has returned. The doctors felt it would take as much as a
week for the hospital medication to clear her system, but there was no
guarantee she would return to her pre-seizure self. Her speech is little more
than one word at a time, she looks fatigued almost all the time, she sleeps
more and just has a harder time doing things she used to do prior to the
seizures.
Last week, Marcia and I
went to NYC to see her neurologist for the first time since her hospitalization. The medication administered in the hospital should
have cleared her system, and should not be the reason she has not yet fully
recovered. Dr. Honig adjusted her
medication by reducing the seizure drug by half. We’ll see if her cognitive abilities improve
and if the myoclonus tics come back (there have been none since the
seizure). We are hoping more energy,
better speaking ability and more independence, but may have to balance a higher
risk for seizure with improved cognitivity.
Dr. Honig also thinks Marcia should not be alone, and this is the part
where “the plan” needs to be tweaked.
He’s not that concerned about seizures returning at this point, but more
concerned if we were to have a fire or other home emergency where she would
need to make a phone call or make quick decisions.
The problem is that Marcia
doesn’t like going to the Day Center.
She seems to do fine while she’s there, but she resists going every
morning she’s scheduled to go. Having my
parents and sister-in-law with us has helped keep her under some trusted
supervision, but we are back on our own now.
I’ve worked at home a few times, and the Thanksgiving holiday has come
at a good time. I’ll be using vacation
time and possibly take FMLA leave (family leave) until we can get her set up
with some home health support to supplement days in the day center. I may put requests on the Helping Hands
website for people to come and spend small chunks of time with Marcia. For the foreseeable future, I expect we might
have Marcia properly supervised, but not very happy. And I’m not doing a very good job pushing the
right things if I’m continually making decisions that make her upset. She hasn’t been happy when spending time in
the house, and she doesn’t like going to the day center. And there really aren’t many other
options. I’m praying she’ll adjust to
both in time and make the most of her situation.
No comments:
Post a Comment