Friday, December 16, 2011

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.


  1. I'm glad to hear things are looking up, Martha! I hope you and Lisbeth have a great holiday.

  2. Thank you for posting an update. I wish I could give you a hug.

    Acceptance is so hard for me as well, especially when things keep changing.

    Sending love and prayers to you and your family.

  3. Oh thank God. I'll type that again. Oh thank God.

  4. So pleased you posted this update. Do try to have a relaxing and joyous holiday.

  5. Merry Christmas to you and your family, Martha. What you said about your mother's illness and death triggering your sadness about Lisbeth's illness really resonates with me, for some reason -- both these beloved women transformed by illness in ways that are mysterious and difficult to bear. I'm glad that nurse solved one big mystery, and I hope you are all having a joyful and peaceful holiday season thanks to her.

  6. Thankyou, All, for your kind thoughts and prayers, and Wishing You a Peaceful New Year!!!