Caregiver Sleep Problems

I've spent a lot of time lately talking about epilepsy.  It is always on my mind, consciously and SUBconciously.  I mean, most of Weslee's tonic clonic and clonic seizures happen in the late night or early morning. 

He had his first tonic clonic (grand mal) seizure in April 2011, just one month after he got diagnosed high functioning autistic. That's over eight years ago.  Eight years of split attention and only the lightest of sleeps. 

Most people won't understand this.  Hell, sometimes my own doctors don't get it! I started missing time a couple of years ago.  Memory failing. Didn't say anything to anyone, not really.  But after a year or so, I did bring it up at a doctor's office.  The PCP sent me to a neurologist who ran an EEG right then, and told me I have a blip on the EEG, probably seizures, and immediately prescribed Keppra.

I'm thinking ... what???

I didn't take the pills but I did make an appointment with my son's neurologist.  Second opinion.  Did another (longer) EEG that didn't show anything unusual.  They advised me to NOT take the pills, and to see a sleep specialist.

That doctor said I should have a sleep study.  I said I already know I have insomnia (can't get to sleep), hypopnea (can't stay asleep), restless legs syndrome, and sleep apnea.  Wanted to get me on a CPAP machine right away, but I poo-poo'd that.  Um, very firmly.

Caregivers will understand why.

If I am attached to a CPAP machine, I won't be able to hear Weslee have a seizure.

Plain and simple.

So since the doctors now understand that I will NOT wear a CPAP machine, and that my memory and missing time problems are sleep related, I need to come up with another idea of how to best manage my sleep-time.

But it's not just that.

Honestly (and I've only mentioned this to one other person in the world), I am terrified to go to sleep.  I force myself to bed around 2:00 or 3:00 a.m.  Sometimes I still can't sleep, and when I do, it's restless.  A crack of thunder, or a train on nearby tracks wakes me. And sometimes it's Weslee throwing himself across my legs on the bed as he falls into the seizure (he sometimes has 30 seconds or so of an aura, or warning.)

But ... my fear is .. If I sleep, and sleep deeply, I won't be able to hear Weslee have a seizure. And he could die, especially since he twists his upper body during a tonic clonic, and ends up face smack down on the pillow. SUDEP = sudden unexpected death in epilepsy.

And I just can't lose him.

So my conundrum is ... I need sleep. I want sleep.  But I can't allow myself to. Not like most people sleep.

Maybe I should start taking naps during the day, when Weslee is less prone to having a big ole seizure.

Now... I know I'm not alone in this.  I have chatted online with other caregivers, and have come across insomniacs in my research for my book.   Anybody care to mention what they do about this problem?

Okay, it's after 3:00 a.m.  Gotta gotta gotta get SOME sleep.

Have a great night, people.