Seizures(4)

David J

The last few weeks have been crazy. My wife in MCF had a seizure last week and was in the hospital. I was with her in the ER for 24 hours until there was a bed available. ER seemed cognizant of dementia, but inpatient floor was totally ignorant. I was there in the ER for 24 hours and then 8 hours on the floor. Six hours off and then back. They couldn't deal with incontinence, pacing, exit seeking etc. They tied her in bed and let her pee and poop herself. I finally got her discharged, but two days later she had another seizure. I witnessed this one and it was terrible. She fell on the floor and split her scalp. It’s terrible to see someone you love lying in a pool of blood. Hospitals are not prepared for dementia patients. They seem to expect normal reactions. It is so infuriating. She now has a UTI, probably from wallowing in her own feces for hours.  They put her on Depakote, which seems to be helping both as an anti seizure med and as a calming med. It just seems to be a constant issue of behaviors.  Every day is a learning experience for me and for her caretakers. I feel so helpless sometimes.

Jeff86

I am so sorry, David, at these new terrifying medical incidents, as well as your sad and scary hospital experiences.  

I have also found the hospitals don’t have the skills to care properly for patients with AD.  A few years ago my DW was in the hospital with fractured ribs.  She was very anxious, especially when I left for the night, and doubtless in pain.   The nursing staff called me three times that night to have me return and comfort/calm her.  

What a distressing set of experiences for both of you. I’m glad the Depakote seems to be working for the the seizures and the anxiety. But you’re so right—we as caregivers live in a constant state of feeling helpless against this monster called AD.  

M1

So sorry David.  Yes, the hospital experiences are terrifying and apparently universally awful.  It's so shocking on so many levels.  It does sound like the Depakote is a good choice and I hope as her levels equilibrate will help.  So, so tough.  Thinking about you.

Beachfan

I am so sorry to read of this, David.  Having placed your DW in MC is traumatic in itself; these further developments are heartbreaking and scary.  Long before MC placement, it was clear to me that DH would not handle an ER visit or any medical emergency well.  His inability to process what was being told to him and/or directions given to him would result in his being perceived as combative or uncooperative.  Even were I called to comfort or calm him, I don’t think it would help.  It is one of my greatest fears going forward.  I hope the Depakote helps with your dilemma and the situation calms.  I am thinking of you.

Marie58

I'm so sorry, David. What an awful experience for both of you. I'm glad the meds seem to be working. Saying prayers for you both.

JoseyWales

David - I'm so sorry for everything. Have they said why they think your DW had the seizures? And tying her to the bed - I can't think of any excuse for that! 

DH had a few seizures late last January. He was still home, and fell and hit his head with the first one. It dented my fridge. That resulted in an ambulance trip to the ER, a day in the ER, another seizure at the hospital, and admittance to the hospital. I stayed with him the entire 4 days, with the exception of going home to shower twice while his sister stayed with him. I was surprised at how much the nurses didn't know about dementia.

He had another seizure once home. I felt so helpless, too. There's just no training for everything that life throws at us.

David J

Josey, the neurologist told me that 40% of AD patients have seizures. I know that others here @ alzconnected have reported seizures in their LO with dementia, but it doesn’t seem like 40%. As you know, when it’s your spouse having the seizure, its100% probability.

David J

To add to the story, my wife developed a UTI after the hospitalization. Probably from waiting 45 minutes for the nurse to clean and change her after she pooped the bed.

Joydean

David I am so sorry for all you and your wife had to go through. As caregivers we learn something new almost daily. It makes this disease much harder when the medical profession we have to depend on are completely clueless. I pray the new meds work for your wife. Prayers for you and your wife.

JoseyWales

I was also surprised to find that seizures are common with dementia patients. It doesn't seem like it's come up here very often. But if 40% (!) suffer them, we need to make this a more common discussion. 

In DH's case, they don't know if it's the dementia or a new medication he'd been on for about 6 weeks. Doesn't really matter, we stopped that medication and now he's on an anti-seizure med. I'm still noticing some muscle jerks that he was doing just before the seizures, so while I was at first blaming the seizures on medication, I'm now leaning toward it being just Alz progression.

We had to increase the anti-seizure med once, after a third seizure. There haven't been any more seizures in almost 2 months, so I guess it's working.

Hopefully your wife's seizures are also managed with the medication and don't return. They're not pretty. I'm sure the blood from her cut made things so much worse at the time. 

And that UTI which was preventable, I'm so sorry for her.

Vitruvius

Not all seizures have outward signs. DW has had several bouts of significantly heightened confusion and agitation lasting hours.  After ruling out a UTI the neurologist suspected "silent seizures". She was prescribed Keppra, but the side effects were worse, confusion and depression, and continuous so the neurologist stopped the Keppra after one week.  It was better to suffer occasional suffering than continuous suffering.

Apparently silent seizures are common in dementia patients and the signs are not physical but they can cause the type of symptoms my DW had, as well as other behavioral issues.

MN Chickadee

I'm sorry she had such a rotten hospital experience. Glad the Depakote is working. 

If a seizure med seems to cause side effects, based on my experience I recommend giving it at least 2 weeks. My mother developed seizures in later Alz. She needed Keppra, a anti-convulsant, to control them. Once she started the keppra it took 2 weeks for her body to adjust, she was sleepy and out of it, didn't engage in life much. After that adjustment she went back to her baseline and normalized to where she was before. I would encourage trying to control them with medicine, otherwise it's just a matter of time until one causes an fall/injury she can't come back from. Many anti-convulsants cannot be crushed but we had luck getting in into her on a dollop of pudding until she was close to the end of life. 

LilySue

After an ER visit and subsequent 10 days in a psychiatric ward for agitation, DH's speech therapist (he has global aphasia) told me to NOT go to ER for a seizure. There's nothing they can do about it anyway and all it does it upset the patient. His doctor can adjust the Keppra just as easily without a visit. This was a valuable lesson for me.

Vitruvius

For my DW her worst side effect on Keppra was suicidal thoughts.  She has been almost always happy and calm other than her delusions which are not distressing to her (just me).  But to listen to her lament her life and think it was no longer worth it was too much for me and her neurologist.  So YMMV.