Immediately after an extended Parkinson's freezing episode that led to a panic attack (her first), Mom had what looked like a grand mal seizure. After almost a week in the hospital, she had no further issues and doctors came up with no conclusion on why it happened. Discharged to rehab and immediately began panicking and having convulsive movements in her arms and legs, so they sent her back to ER. Spent the day in ER before they sent her back to rehab, where the next day she had another "grand mal". Back to the hospital.
Spent 4 days on video telemetry. Naturally, she was steady as a rock the entire time (so frustrating!). Then, an hour after the EEG wires came off, she started with more convulsive "fits", followed the next day by another seizure. She starts screaming, convulsing, goes rigid, stops breathing, lips turn blue, pees her pants, falls unconscious, etc.
But NOT a seizure!
The neurologist's diagnosis: conversion disorder. Something to do with her Parkinson's is giving her the sensation of falling/flying/being out of control. This leads to panic attacks, which lead to these non-epileptic "episodes", which vary in severity. Now, just the fear of having another episode leads to an episode. Today is day 21 since the first one happened.
Yesterday, as I stood at the foot of my sleeping mother's bed discussing her imminent discharge to a rehab with a caseworker, she awoke and immediately went into a severe episode. I appealed the discharge and began advocating even harder for Mom. She's been prescribed Paxil and Ativan, but the situation is obviously far from under control, and will undoubtedly continue to happen at rehab. How will these episodes be handled at the rehab? Will they immediately be there by her side if one happens? Will they be able to talk her down when one is beginning? Will they send her back to the hospital, where we begin the cycle all over again?
It seems like I'm being heard, so here's where we stand: the hospital is trying to get her into a facility that is better equipped for this issue than the one we originally picked based on her stay last year when she broke her hip. The psychiatrist's nurse practitioner came in and very clearly explained to my mom what is happening to her in a way she can understand (though she is having a very hard time understanding anything right now due to the horrible things that are happening to her, the extended hospital stay, and the fog of Ativan). They are requesting that she gets not only PT and OT, but that a mental health therapist see her while she's at rehab and afterward when she (hopefully) comes home. Currently still waiting for information.
I've been to the hospital every single day but one since this happened. I've been maintaining a brave face at the hospital, with the exception of yesterday, when I was weepy all day and would break down in tears anytime someone said something nice to me!
My siblings are "helpful" to varying degrees, but as always, I am the main caregiver and decision maker. This, I can handle. What I have a hard time dealing with are the forms and financial matters! I practically have a panic attack myself thinking about them. A request for help with Mom last summer ended very poorly (how on earth can they be possibly be expected to take Mom for one weekend a month, what with their exquisite special-ness!), including a request that someone handle these matters.
Wouldn't it be nice if someone would, besides texting "how's Mom?" and "thanks for the update" once or twice a day, say "and how are YOU doing? Is there anything I can do for YOU?" Far be it...
Wish us luck, and of course any kind words or advice would be SO appreciated!
But the thought of doing it - ugh! I'm SO strong when it comes to some things, much stronger than my siblings, but this...I'm still shell-shocked from past nasty confrontations.
I need to fess up to my shortcomings and tackle this.
Are you able to hire help once she is home, or get some support through your local agency for aging. Detached sibs are the norm we see here. I am sorry yours are no help. You could use some.
Take enough time for yourself to process all that is happening. It must be very distressing for you to see these episodes, as well as for your mum go through them. You need some "down time". Take it while you can. Treat yourself to a massage or a partial spa day. You need to build yourself up.
Your post makes me wonder (and not for the first time) whether the donkey who picks up the load ever tells the siblings the way it is, just as clearly as they say in their post. If your siblings are hearing this one day at a time, usually when the drama is over and you have already coped with it, they need to see the totality in the way you have put it to us.
It sounds to me that this is time for a serious discussion with all the family about who is going to do what. You cannot do all of this. Even siblings with their own special issues can at least spare time to do the paperwork needed for your mother’s care.
You need to tell them that you can’t and won’t cope. Unless and until they step up to the plate big time, your mother is going to need to go into care permanently. Whether you are actually ready for that immediately is not the point. It will come to that if this goes on permanently, and now is the time to push the point. Don’t wait until you are crippled with all of this yourself, both mentally and physically.
You have my total admiration for what you have been able to do so far. I do wish you good luck, but please don’t let it go on like this.