I don’t like to admit seizures scare me but sometimes they do.
You would think I would be used to Robert having seizures. After all, he’s my youngest brother and he’s had them practically his entire life.
|Robert's downstairs bathroom|
Robert’s seizures have evolved over time from Absence Seizures when my parents first realized he had a problem to Tonic-Clonic Seizures through his middle and high school years.
After a couple of brain surgeries, he now has Complex Partial Seizures which last (for him) between 10 seconds and five minutes.
Over time, I was able to get used to most of his seizures. I knew what to expect. Since Robert moved in with us, my husband and I keep a log of his seizures. This log is probably why I was so detail-oriented with my Caregiving Day Log. It’s amazing how much can happen in 10 seconds Ten seconds doesn’t seem like a long time but try writing down everything you do in 10 seconds. It’s probably a lot more than it seems.
A typical entry into Robert’s seizure log for a 10 second seizure: “While washing his face; rt hand slowly went down; head to rt.”
Typically, he has his seizure, I wait and watch to be sure it doesn’t go into a longer, more unusual seizure and then he finishes up whatever he was doing. Robert doesn’t like to say he had a seizure and prefers to tell me he “fought it off.” I used to correct him and tell him he did in fact have a seizure but soon realized how important it was to him to be able to believe he was fighting them off. I no longer try to take that away from him. I discreetly log the seizure and help him with what he was doing.
Those seizures don’t scare me. I am used to those and recognize they are just part of our day. They are part of every single day. My log for February shows Robert having more than 60 seizures – and those are just the ones Richard or I witnessed.
This week, Robert had two seizures that were longer than usual, different in what happened during them and, frankly, scared the crap out of me.
Both were during his morning bath. Robert and I have developed an excellent system for his morning bath which was borne out of necessity since we don’t have a downstairs shower. Robert sits on top of the toilet and I hand him a wet washcloth. While he’s scrubbing his face, I wash his hair. I then give him a dry washcloth to dry his face and hair. While he’s doing that I get another washcloth wet and soapy and give him that to wash the rest of himself. Once he’s done, he stands up, holding on the grab bars, and I wash and dry his back. He usually has a quick seizure at this point and I put a towel on his and hold him up if he starts to lean or fall backwards.
The seizure almost always lasts for 10 seconds and then he sniffs or giggles and I have him sit down to finish drying off.
One of the scary things about seizures is they are unexpected. I considered it a win that I could expect this seizure in the morning while washing his back. I could prepare for it which is what we always want to do with seizures.
Wednesday was different. Robert was standing; I was washing his back. He dropped his head like usual and I grabbed a towel and held it against him, expecting to wait 10 seconds.
Ten seconds passed and his head went further to the right and his legs gave out. As he was crumpling to the floor, I tried to hold him up to no avail. He’s 213 pounds and feels about double that when he’s dropping to the floor. I am just not strong enough to hold him up.
I slowed his slump but couldn’t keep him up. I called for Richard but by that time, Robert had turned his body so he was facing another wall and was already on his way down. I had him under his arms and I was doing my best to keep his back from hitting one wall and his head from hitting another wall (success with the back; not so much with the head). Richard and I tried to move him so his back wasn’t leaning against the bookcase in the bathroom or didn’t hit his head again but his legs were jammed under him and against the toilet. I put a towel between him and the bookcase and kept his head away from the wall.
With the three of us in this tiny bathroom and Robert’s limbs going in all directions, it looked like a Twister game gone wrong.
My fear was he was going to break his leg.
Robert came out of his seizure after a couple of minutes but was very confused. Taz managed to squeeze into the bathroom and proceeded to lick Robert’s arm and ear. Robert was too confused to even manage to look annoyed.
It took quite a while for Richard and me to get him to move so he was in a more comfortable position. Once Robert was back seated on the toilet, I checked him for bumps and bruises and he only had a little scrape. Thank goodness but it was extremely disconcerting and I was very upset thinking he had come close to breaking a bone.
Thursday brought yet another different seizure. This time, I was more prepared. Robert was having his usual seizure during his back washing and also saw his head move further to the right. I called for Richard to bring the walker, thinking I could lower him into the walker before he slumped to the floor. I kept Robert from twisting his body this time but he still slumped to the floor. This time he was on one knee, head against the wall and his other leg was scrunched under him and wedged against the wall. This time, I feared he had broken his knee cap because his knee was extremely red.
This seizure kept going. Minutes ticked by and his breathing was labored, then he was moaning.
In that moment, I thought he stopped breathing and I thought of all the children and adults who have died of SUDEP. I told Richard he stopped breathing and, because of Richard’s position, he could see Robert breathing and told me he was.
Now I could breathe again.
Within seconds, Robert started pleading, in a soft, pained voice: “Help me. Help me. Help me.”
I could feel my heart shattering into a million pieces.
Is he hurting? Is this what is going on his head with each seizure? How can I help him?
Richard and I were able to move him a bit and got him up on the toilet. He was extremely confused and groggy but out of the seizure long enough for me to give him an Ativan which is my go-to drug in case of the seizure clusters or a prolonged seizure. (I have Diazepam but it is administered rectally which is usually impossible. We came close to using it this time since he had been in mid-bath but was able to take the oral medication instead.)
Robert was confused but was finally finished with his seizure. I checked him for any bruising or bumps, Taz got in a few licks and then I helped him dress, Richard prepared his breakfast. I took him to a previously scheduled appointment with a podiatrist and then after dropping him off at Day Program, I went into work.
Richard was able to find a shower chair for us to use since a short, 10 second seizure while I am washing his back is no longer something I can prepare for.
This morning we used the chair and it worked perfectly. Robert didn’t have any seizures and he was able to get cleaned up easily.
The neurologist added a new medication to Robert’s regime. If it works, we can eventually try reducing one of the other seizure medications.
I don’t like changing his medications around but he is having way too many seizures. We have to do something. Robert started this medication yesterday so we will watch for any awful side-effects and hope for a reduction in his seizures.
Changing Robert’s medication scares me and these seizures scare me but I have to set aside those fears.
That is how I am going to help you, Robert.
(Richard, my husband and co-caregiver, also wrote about this experience from his perspective which you can read on his website PickYourPain.org.)