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...

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...

Just Hanging...

photo of Mom and Milkweed by Lisbeth

Lisbeth and I made her Gramma Simmons' party mix together at her house on Friday afternoon, then hung out downstairs with Milkweed. Lisbeth has been sleeping better since starting the Benadryl, and her mood and appetite have improved, but on Friday she was having some anxiety and talking about "feeling dead" again. We work to gently redirect her thoughts if possible, and use massage to relax her. If she cannot be redirected and the anxiety escalates, we give her PRN Ativan. Lisbeth had a seizure later that night - this increased anxiety is often the precursor to seizure activity. Milkweed is the best antidote to anxiety...

Gramma Simmons' Party Mix

1 small box Cheerios

1 box Wheat Chex

1 box Rice Chex

1 T garlic powder

1 T onion powder

1 T celery salt

1 t salt

3 T Worcester Sauce

1 lb butter

3 lbs mixed nuts

Mix cereal and nuts in large roasting pan (Lis didn't have one so we improvised, but you really want to use the one large roasting pan!). Melt butter in saucepan and add seasonings and salt to that. Pour over cereal mixture in roasting pan and stir. Bake at 250 degrees for 3 hours, stirring every half hour. Drain on brown paper, cool, then store in airtight containers. Give as gifts, and enjoy some yourself!

p.s. I can't control the spacing on Blogger lately - don't know what's up with that! Oh, well - here's to imperfection and radical acceptance! :^)

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.