Of Potatoes and Flower Angels

Flower Angel, cut February 2, 2012.

One of Lisbeth's exquisitely intricate mandalas from around 2006.

Lisbeth working on a "Potato One" for Little Milkweed in my studio yesterday.

As I mentioned in yesterday's post, Lisbeth's capacity to cut her paper designs has been markedly compromised, and we're not sure why. Did she simply outgrow her interest? We all move on to new pursuits. Is she developing dementia? Her neurologist thinks not, and that her difficulties have more to do with her meds. But which meds? She takes three anticonvulsants. Or is it EPS, a side effect of the antipsychotic drug, Risperdol? Her psychiatrist is not convinced because she's been on Risperdol since 2001. Why wouldn't the EPS have shown up sooner, is his point. But does it take years to develop? So many questions.

Meanwhile, Lisbeth is on day three of the second Risperdol decrease, and is enjoying a really good patch. She's upbeat and clear, and according to her house manager, Rhonda Curit (who just this minute phoned me), is sitting in Rhonda's office contentedly cutting more detailed snowflakes. (Yay!) Lis likes to work in Rhonda's office (which is in Lisbeth's house) because Rhonda will often sit and cut snowflakes with her. It's a quiet space with few distractions. Fingers crossed, getting Lisbeth off the Risperdol is making a difference. Fingers crossed, we don't have to replace it with another drug. Fingers crossed, and a Flower Angel wing and a Potato One prayer...

How She Is

Lisbeth in my studio, admiring her latest "cut," a butterfly...

Butterfly Cut, by Lisbeth

We have started the second decrease of Risperdol this week. I am hoping that as we move this drug out of Lisbeth's system, her hand tremors and joint pain will be greatly reduced, and that she will be able to cut her snowflakes again with the same level of detail as in the past. I have been worried that Lisbeth's brain is deteriorating, and that this is the reason she can't "make the cuts" (Lis-ism) like she used to. I voiced this concern to her neurologist at her last appointment. Dr. Henninger admitted that adults like Lisbeth with a TBI and uncontrolled seizures will often develop dementia in their 30's and 40's, but she suspected this decrease in hand coordination had more to do with her meds. I believe it's either that or the EPS. Or both. To quote my therapist friend, "You can have ticks and fleas..."

Auntie Lis

Lisbeth enjoyed lunch out with her niece Cecilia and nephew Calvin yesterday ("Brother Eben's little kids" in Lis speak... :^) And Ceci and Calvin enjoyed spending time with Lisbeth and Milkweed at Lis's place after lunch. Lisbeth is feeling better since the Risperdol reduction. She's been sleeping good - no more Benadryl - and her mood has been great! It's been two weeks since the first reduction - we go down another notch tomorrow. Fingers crossed, we may be onto something that's actually improving things!

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...

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!

An Update

Lisbeth turned thirty on October 27th.

Lisbeth showing off her new bikini in June.

After a swim in July.

A trip to the ER in mid-October. A gashed forehead due to a fall during a seizure.

A drowsy ride back home.

Milkweed looking out the window for Lisbeth.

I haven't posted for several months for many reasons, one being that I needed a break from all things computer. But I think the main reason for not posting here about Lisbeth is that I've been so discouraged and overwhelmed. After my mother's death I went through a period of deep grieving. I had to work on accepting that she had Alzheimer's and how that changed her. It triggered my old anger and sadness about how Lisbeth's illness changed her, and I have had to work on accepting Lisbeth's situation, again. And I'm learning that I have to keep accepting it, over, and over, and over. I am currently taking a DBT class for my own anxiety issues (I have Panic Disorder) and one of the most important things that I have learned is that acceptance does not mean approval. I'll type that again. Acceptance does not mean approval. We can accept with all our pain attached. Acceptance does not mean we do not have pain. It means we can feel peace even with the pain. It means we do not have to suffer.

Deep sigh.

Lisbeth has been having multiple on-going and worsening problems which have caused me to feel powerless and sometimes hopeless. These problems include extreme insomnia, rapid weight loss (which we were happy about at first, then alarmed) loss of appetite, refusal to bathe, incontinence, decrease in enjoyable activities, depression, anxiety, drooling, increased tremor, body pain, suicidal ideation. We decreased her Depakote - her neurologist thought perhaps that was the culprit. No change.

Fast forward to this week. On Monday her psychiatrist prescribed Benadryl for her insomnia. Lisbeth called me the next morning to tell me, "Mom! I'm back alive! Not dead anymore! All the bones healed up!" We thought, Wow! Perhaps just getting a full night's sleep is helping more than we know. But on Wednesday we had a psychiatric nurse from DHHS come in and do an evaluation. She has uncovered a big problem: Lisbeth has EPS. Extra Pyramidal Symptoms. This is a side effect of Risperdol, the antipsychotic Lisbeth takes for behaviorial disturbances, particularly rage attacks. These symptoms include: decreased appetite, insomnia, agitation, change in hygiene care, restlessness, decreased attention span, increased confusion/dosorientation, tremors in hands, feet lips and tongue, stiffness in arms, back and neck, drooling, rolling of eyes upward, irritabilty, isolates self, and the list goes on. Sometimes these symptoms remain even after stopping the drug.

It was a relief to learn this and at the same time I felt like I was going to be sick. Lisbeth has been taking Risperdol since 2002. It has stopped her extreme rage attacks, but at what cost?? It turns out that Benadryl works to alleviate the EPS - this is why Lisbeth responded so positively to her first dose. It wasn't just that she'd gotten a good night's sleep - the Benadryl masked the EPS.

So what do we do now? We're continuing with the Benadryl for the time being, and we're waiting to hear back from her psychiatrist about how to get Lisbeth off of the Risperdol. It will have to be done very very slowly. Lisbeth started seeing a nurse practitioner at Women to Women last month and she has alot of ideas for Lis including supplements, energy work, and counseling around her sexuality. The psych nurse gave us a whole list of activities that will help Lisbeth with the EPS - alot of OT exercises, and we have scheduled Lisbeth to start a regime of regular massage with her sister-in-law, Oceanna. So, there is hope and room for healing. I am so very grateful that the psych nurse came in with her expertise - she has solved a mystery that slipped by all Lisbeth's doctors.

She is our Christmas Angel.