I am seriously uncomfortable talking about sex. To me, this
is something that is private and should never be discussed. Ever. Not in a
million years. Well, okay, that is an exaggeration. Of course I talked about sex with the kids –
heck, even around the dinner table. But certainly not in every day casual
conversation or on a public blog!
And, yet, here we are.
Talking about sex.
Caregivers handle a variety of tasks, problems and
situations. We wipe bottoms, change wet adult briefs, give baths, clean wounds,
fight with social service agencies and insurance companies, provide special
diets, find the right living situation or day programs, shuttle to and from
numerous doctor/specialist/lab/imaging appointments, manage medications and do
the best we can to keep our caree happy, healthy and safe.
And many have to navigate the delicate subject of sex and
their caree.
Count me in that group now.
We recently changed Robert’s medication in order to get
better seizure control and bring his ammonia level down. One of the
side-effects of a high ammonia level is excessive sleepiness. Robert wouldn’t
admit to sleepiness yet would fall asleep at the drop of a hat.
The neurologist’s nurse practitioner (the person we usually
see at the appointments and who is terrific), agreed that sleeping through life
was no way to live.
We decided to try something new even though I loathe
medication changes. There is ALWAYS a problem. However, the high ammonia level was
concerning as was his seizure clusters.
The neurologist’s NP reduced his Depakote which was the
cause of the high ammonia levels and added a recently FDA approved drug,
Fycompa. The change was dramatic! The seizures are few and far between and his
ammonia level is going in the right direction. Robert is awake although still
requires a great deal of sleep.
At first we did not have any of the difficult side-effects
of a medication change. I even sent a note to the neurologist’s NP exalting the
miracle of this new drug regimen! Robert was awake, there was not a terrible
change in his personality as there was with the Trileptal nor did his balance seem
affected at first as it was with Vimpat.
Robert started out slow on the drug (only 2 mg in the
evening) and then it was increased to 4 mg in the evening. Soon after the
increase to 4 mg, Robert developed a terrible cough and I assumed he was headed
toward pneumonia. He could barely walk as his balance was completely off and
his legs seemed weak. As he walked he sank as if he was going to sit down. It
appeared he had no strength in his legs and he needed a lot more sleep. I also
noticed a huge increase in his water retention making his feet look like clubs!
He had the usual symptoms of when he is headed toward
pneumonia (terrible cough and problems walking) but his pulse rate was not
consistently high, his cough was not producing any mucus, his blood pressure
went a little low but not “look out for sepsis low” and his oxygen level was only
marginally lower than normal. His temperature was also normal but this is not
unusual for him, even with pneumonia (it is also common for the elderly not to run
a fever with pneumonia).
However, I was confused. Even though some symptoms indicated
he was headed toward pneumonia, it was without the usual consistently high
pulse and colorful mucus.
He also seemed to be developing a yeast infection on his
penis because he was frequently rubbing it when going to the bathroom. His
penis was red and he said it itched and was slightly painful. During this same
weekend, he also started on a strong dose of antibiotics for the pneumonia symptoms.
I was certain these couldn’t have caused a yeast infection since the “itching” started
before he was on the antibiotics.
A few days after starting the antibiotics, Robert was
difficult to wake up for his Day Program. He was groggy, slurring his words, and
couldn’t keep his eyes open. An altered mental state and difficulty waking is
just one symptom of sepsis and since his pneumonia and sepsis seem to go
together like peanut butter and jelly, Richard and I made the decision to send
him to the ER.
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| Robert during his recent visit to the ER |
After spending an excruciating 10 hours in the ER and
checking for a UTI, pneumonia and any other type of infection, as well as blood
clots (because of his severe edema), and describing a possible penis problem (I
have never had to say “penis” more often than during that visit), we were sent
home with Lasix and a yeast infection cream.
Almost immediately, the Lasix did the trick with his edema.
The cough, the balance issues and what I started to refer to as the “PP” (penis
problem), persisted. I checked in with the neurologist’s NP and she suggested
the problems were due to the Fycompa. As with many anti-epileptic drugs,
balance can be affected as can the mucus membranes. Within two days of taking
him off the Fycompa, Robert’s cough all but cleared up and he was walking with
much less difficulty.
Yet, Robert continued rubbing his penis.
Oh. Ewww. God.
I slowly realized there was not a yeast infection problem but
Robert was engaging in a behavior rivaling any teenage boy.
Please hold while I check my caregiving manual. Nope. Not in
there.
Seriously? Robert is more awake now that his ammonia level
is going down but this is what he wants to do with his time?
Oh. My. God.
Once Richard and I realized what was going on, we also
realized this was happening for hours at a time. No wonder he was so sleepy in
the morning! We realized this wasn’t just about newly awakened feelings but appeared
to be a compulsion.
After some research, I found that epilepsy in the temporal
lobe region can cause hyper-religiosity and hyper-sexuality. For some reason –
perhaps the new medication, the reduction in the Depakote, a change in his
seizure activity – something is causing Robert to have this sexual compulsion
which is affecting his daily life.
And now mine!
As a caregiver, it is affecting my ability to care for
him in several ways.
First is my extreme discomfort with this behavior. I have
seen Robert have similar impulse control issues when he was a teenager and I
am not very comfortable reliving this behavior. It became so bad thirty-plus
years ago that Robert actually tried to sexually attack me when we were alone
in my dad’s apartment. Robert seemed in a trance-like state as he came toward
me when I was in bed and I had to physically punch him in the nose and run out
of our dad’s apartment in order to get away from him. Our family went through
much hand-wringing and had many family meetings about what to do with Robert at
the time. Should he be placed in a group home? Why is he doing this? What
should be done?
The solution was for me to cease contact with Robert for at
least several months and, as far as I know, Robert’s medication was changed. He
and I never talked about it again.
It was a terrible time in our family history which I am sure
is what is contributing to my extreme discomfort with this current situation.
Richard and I also have cameras in the house so if we are
not in the same room as Robert we can still keep an eye on him and monitor any
seizure activity. This is how we came to realize what was going on.
Ack. The things I cannot unsee!
Obviously, we can no longer monitor the camera in Robert’s
room once he goes to bed. I am sure we are missing seizure activity.
Another concern for me is a lack of sleep is a seizure
trigger for Robert. While we have not yet seen an increase in seizure activity
since he has gone off the Fycompa, I expect it at any time. The lower dose of Depakote
and the lack of sleep is a recipe for a seizure cluster if I ever saw one.
While we sort through Robert’s new behavior with his
neurologist to determine if this is neurological, medication or
seizure-activity related, the reality is that caregivers do sometimes have to
deal with the sexual side of their carees.
This could be a loss of sexual intimacy between partners or spouses when one is caring for the other; a son or daughter might have to deal
with this issue with their opposite sex, still sexually active parent and
assisted living facilities may have situations come up between residents as
well.
While this particular situation is a challenge for me right
now, it is one of the many challenging aspects of caregiving. No matter what
new challenges are presented to caregivers, they are met with research,
conferences with doctors, possible medication changes and fierce tenacity.
Generally, I would add patience to that list but find myself
currently challenged in that regard.
For me, even when my patience is waning I know that my
persistence in finding a solution will get us through whatever challenge we
face.
When a caregiver sees a new behavior – regardless of what
that is or how uncomfortable we are with it – we have to figure out what is
causing that new behavior, how serious of a problem it is and if it is
affecting quality of life. I may have to eventually accept Robert’s new-found
activity as a “new normal” but I won’t until I have ruled out that it is not
indicative of a serious neurological problem.
Phew, we got through this! Talking about sex and caregiving wasn’t
so bad after all was it?
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