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.