Lisbeth & Milkweed

Letting Go

Kathe Kollwitz

Lisbeth is emotionally so very young and she is an adult. She has her own support system, her own higher power, her own life. I have to be careful to take care of myself, to have a large part of my life be separate from Lisbeth's, the same as it is with my four other adult children. I must constantly determine where and when I am needed and step back and let go when I'm not. Easy? Noooooo..............

Now We Wait

Lisbeth in a staring seizure...

Dad waiting for the window of opportunity to administer 1 mg Ativan...

Kneeling at the Altar of Patience...

We finally did get it into her, so now she will rest and hopefully clear up...

Lisbeth's Milkweed Shrine table...

Garry and I saw Lisbeth's psychiatrist last night, then brought the orders over to Lisbeth's staff at her house. While there, we helped to give Lisbeth an Ativan for staring seizures. We are stopping the Benadryl, and starting a slow decrease of the Risperdol. We will wait and see what happens. If her rage attacks recur, we spoke about the possibility of trying another anti-psychotic once Lisbeth is off Risperdol, one that does not cause EPS: Seroquel.

Sigh.

To quote Lis, Hard to know...

Off Track, and Betting...

Lisbeth, telling her Dad about "the eyeballs hurting" on Christmas morning. Benadryl can cause dry eyes, and Lisbeth's staff has been administering eyedrops several times a day since the Benadryl increase.

Well, Lisbeth went home after her workout at the Y yesterday and had a seizure, and her aide phoned this afternoon to say she's just had another, making a total of 5 this week. Not good. We think the Benadryl is the culprit, so I paged her psychiatrist who has faxed a stop order to Lisbeth's staff. My husband and I will meet with him this evening to talk about next steps. Do we start Cogentin for the EPS? Her doctor is not even convinced that she has EPS, or at least that all the symptoms we are observing are EPS. But as a nurse friend of mine says, "You can have ticks and fleas." As usual, there are most likely several things happening at once with Miss Lis. It's never black and white. Do we decrease the Risperdol? Will this help with the insomnia? What if she has full blown rage like we used to see BR? (Before Risperdol: I'll write more about that rough chapter, soon...)

Always a gamble...

Back on Track

My husband and I attempted to get Lisbeth to swim with us in the therapy pool at the YMCA today. It was a no go. Lis used to love to swim and participated in the Special Olympics, winning several medals when she was in high school. In recent years, though, the pool has become a source of anxiety. We keep hoping that we can gently ease her back into a swim routine, but there is no forcing this, of course. Just showing up at the Y and being willing to consider a swim is a positive thing. Lisbeth did agree to walk the track today, and completed five laps! And she noticed aloud that this made her legs feel good: "all healed up" was her description.
Way to go Lisbeth!

New Year's Eve Report

Lisbeth, postical sleep. Milkweed and "The Hurt Feeling Bear" keeping watch. Three grand mals this week. A neurologist once compared the energy expended in one grand mal seizure to playing an entire football game.

Lisbeth craves "chadder cheese" after a seizure.

Milkweed likes "chadder cheese," too...

Those eyes. All knowing Milkweed. Bless her little kitty heart.

Lisbeth is chronologically thirty years old, and emotionally six, the age she was when she suffered the brain injury.

Lisbeth has had a rough week. We had to increase the Benadryl because she was having more insomnia, and even with the increase she hasn't been sleeping again. The Benadryl is drying out her eyes and might be causing more seizure activity to boot. We will be talking with her psychiatrist next week about an alternative sleep aid. And the psych nurse has recommended Cogentin for the EPS, to replace the Benadryl. Always this juggling act of trial and error.

I am grateful to all the good folks and critters who help to care for Lisbeth. She's such a trooper!

Here's to a Happy & Healthy 2012, All!

Christmas Gifts

Lisbeth and her Christmas stocking...

...getting some help from our cat, Sal.

Hummingbird socks!

Cairn takes a nibble of Lisbeth's new little unicorn...

Lisbeth and "Big Sister Kaitlyn."

Lisbeth's spot at the table, waiting for her till later...

After a nap. Lisbeth with her sister-in-law, Tracey.

Day after Christmas breakfast.

Silly Lis trying on Momma's glasses...

Lisbeth spent the whole day with us on Christmas by herself (her one-on-one helper called in sick), and slept overnight. She was clear and able to enjoy opening her gifts and being with her family. This is my best Christmas gift, for there are many holidays and birthdays in which Lisbeth cannot partake or even remember because she is in the throws of a seizure cluster. I am grateful that her seizures held off until afterwards (she is down with a seizure cluster now as I type this post). Lis had some anxiety Christmas afternoon; we laid her down on the couch in a quiet room and did massage and tried to redirect her thoughts without success and finally had to administer her PRN Ativan. Being with groups of people, even those she loves, can trigger great anxiety for Lisbeth. So she napped during our dinner and was able to thoroughly enjoy a quiet turkey supper later in the evening. And then she slept through the night, which is a small miracle in itself!!

Happy Holidays, All!