False epilepsy.

So recently Mom has been experiencing tremors and uncontrollable body shaking. First, it was almost like restless leg syndrome. I called her psychiatrist and he prescribed an anti-shaking medication for Parkinson’s Disease. Obviously Mom didn’t take it. More pills? Nope.

I pretended it wasn’t happening at first and that it would go away. She kept saying she didn’t want to go to a doctor and would refuse each time I asked. I didn’t want to make this an argument, so I kept pushing it back.

Then we self medicated by deciding that the shakes might be from the Geodon. I figured that if she stopped taking the Geodon and the shakes stopped, then we would figure out why she was doing what she’s doing. I started doing more research on Geodon than I should. Sometimes, I’m kind of like a hypochondriac for my mom. That was two days ago.

The idea of her getting TD (Tardive Dyskinesia) is one of my biggest fears. If you read anything at all about taking antipsychotic medicine it is scary stuff. As always, you will find somewhere in the fine print that the medicine’s side effects were deemed by your doctor as worth it to improve your overall health. Basically, TD is when your face starts to freeze. You start to tremble and you find yourself smacking your lips.

Sounds pleasant.

Unfortunately with Geodon, they also warn about the possibility of what is called NMS (Neuroleptic Malignant Syndrome) which is confusion, shaking, tremors, high fever, and stiff muscles.  So when you put the two and two together… I was worried Mom had NMS. I worried about it for over two days. I told her to stop taking Geodon thinking well, if she has NMS, then it will go away if she’s off the meds. Kinda. Sorta. Right?

I know. I know. Don’t ever, ever stop taking a medicine, especially, an antipsychotic without a doctor’s approval because of withdrawal symptoms and everything else. But if you were me — what would you do?

It takes over two days for Mom’s psychiatrist to get back to me if I call them. They aren’t there on the weekends. Their emergency line is 911. I made the decision. I know it’s stupid.

So during my lunch break Mom was shaking pretty badly and I made the decision that it was time to go to the emergency room. I knew I was going to be chastised for her stopping Geodon, but she hadn’t expressed any psychotic symptoms yet (usually she will start rambling, spew hatred, etc) so I got her, shaking and all, into my car and we drove to Queenstown to the emergency medical center.

I really didn’t know what to expect, but I did NOT expect for the doctor there to be as rude as he was. I was actually baffled when this happened:

The doctor on duty came in while Mom was shaking, he raised both her arms up and down, and then announced “Well we know you are faking this.”

I about had a cow.

There are some rules that I think everyone needs to know when dealing with someone who may be a schizophrenic. I have learned these from experience.

1. You don’t announce to them that they are a liar. No matter their delusion, they are dealing with it. And they have dealt with doctors, families, and friends telling them their delusion is not true. They will get frustrated, upset, and sometimes angry. This does not help alleviate calming them down at any point. Ever.

2. You talk to them first. Don’t talk to me. Don’t pretend she’s not there. No matter if she is a schizophrenic, some people forget that for the most part, they are sensible and sane when they are on meds. Not every schizophrenic has voices in their head telling them what to do and are not as “crazy” as the name stigmatized.  Assume that they are reasonable until they are not. But also assume they will be unreasonable if you call them psychotic.

He called her a liar and then only spoke to me. He said that had never seen a tremor like that before and that she was making it up. I wanted to stand up and scream at him with all of my frustration from the past year… but I didn’t. Yet.

Then he proceeded to pull out his cellphone and take a video of her convulsing. I remember telling him, “You do realize you are videotaping a schizophrenic whose main concern in life is that she thinks she has been videotaped her entire life, right?” I don’t think it phased him. He then left and said he needed to show others to prove that he was right, that she was faking it, and that was that.

Oh and then he yelled at me about her stopping Geodon but I knew that. So moving on.

Then he suggested that she be admitted because this was obviously a psychotic episode, as if he just didn’t want to deal with it. Then I cried.

Through my tears in which I probably looked like a blubbering idiot I told him that if this was the only thing he was going to do is say she needs to be put back into a hospital in the behavioral ward and wasn’t going to look into further then we were just going to leave. I have already spend over $10,000 this year in medical expenses for Mom to make her feel better, feel happy. I already know that the local behavioral ward is awful. I will never, ever send her back there. The doctors there were terrible, non-communicative, and placed her on Clozaril which tore up her intestines for months and caused me two emergency room visits. So no.

When he left I cried again and watched Mom be given Benadryl in her IV. I kind of hoped it would make her pass out, but it didn’t. She was a little calmer but continued to convulse every once in a while.

After an hour or so, Mom had an EKG done. I was a little relieved. Maybe he was at least going to check every physical avenue to prove his point. I still didn’t believe that Mom was truly just lying about her shakes. Mom hates doctors. Why would she purposefully do something that would cause her to go to a doctor? That doesn’t make sense.

Finally, the doctor came back. I cried. I think I cried pretty much the whole time. Maybe out of guilt, out of stress, but I think I probably looked just as pathetic as Mom as she twitched.

He said her EKG came back normal and that Mom had been diagnosed with “pseudo seizures.” Basically, although Mom is not necessarily faking it on purpose, her shakes are not due to a physical illness. She is not epileptic. She did not have TD or NMS.

The term “pseudo seizure” even makes it sound malingering — basically, that Mom was trying to get attention. The difference between a pseudo seizure and an epileptic seizure is that hers are being caused by stress or anxiety.

I cried out of relief and then the doctor apologized for being brash in the beginning and said he should have realized why I had brought Mom to the emergency room first instead of going back to the psychiatrist. He said he looked into the side effects of Geodon and understood my concern then reassured me that Mom did not have any of these.  He recommended that Mom and I go straight to her psychiatrist after we were dismissed, but Mom at that point was angry that he wasn’t talking to her again and started demanding that no, she was not psychotic, she was just tired, and if someone could just give her some sleeping pills she would be fine.

He gave her a Xanax and sent us home. I was so distraught from being relieved that 1) Mom wasn’t physically dying and 2) confused as to what the heck to do next with my convulsing Mom I didn’t go immediately to her psychiatrist. Mostly also because Mom started ranting about how doctors were evil, they don’t help, she wasn’t fixed, and basically screw the world.

If anyone is worried, Mom is taking her Geodon again as prescribed.

I have a meeting with her therapist on thursday, without Mom, to discuss options. Today’s frustration has reinforced that if things get worse, I don’t think I can do this all on my own without help. I need resources, answers, and support. I am hoping that her therapist will help me (and for those that are curious as to how I am able to do this, Mom signed a waiver so that I can speak with her therapist).

I will be calling her psychiatrist tomorrow. Her next appointment with him is on May 1st, so I doubt anything will change until then. I have done some research tonight but I will try to stop over analyzing the situation. From what I’ve read, some antidepressants help.

More pills seem to be in our future.

Bugs, Sheds, and Weeds.

So I know I’ve been non-existant since the end of February. Let’s fix that by telling a short story that I was so fascinated by that I had to tell someone.

While in our teeny tiny master bathroom I was brushing my teeth and noticed out of the corner of my eye this small, creepy crawler looking thing (most likely a centipede, but I don’t want to be incorrect so let’s go with creepy crawly instead like those glue moldings we used to make as kids to freak out our siblings) and I panicked. I realized it would take too long to grab a shoe from our closet and killing it with a tissue was out of the question.

So I reached for the Listerine bottle and poured it the purple alcohol all over the crawler. I’ve never seen an insect writhe in pain like this did. It stretched this way and that for about a minute and then finally stopped dead, halfway in an attempt to climb the baseboard to get out of the Listerine.

I almost felt bad for the thing. Almost.  If you know me, you’d know that I absolutely hate all insects. Especially insects that enter our teeny tiny master bathroom. I don’t know how they do it, but I can assume because our bathroom has an exterior wall that is where our Hosta garden is that they like to find a way in somehow. I’m usually a calm and passive person unless there is an insect anywhere near me. Then I change into an immensely angry individual with a killing problem where I want to kill that insect as well as any of its family members with a vengeance for coming anywhere close to me.

I own about three bottles of Home Defense right now because you can never have enough chemicals to kill bugs.

…Anyway. Enough for my bug tangent. In other news, we have started the incredibly long process of getting our yard ready for the warmer months which includes me weeding all four of our massively large garden beds and Jason, unfortunately, built two sheds in the past two weeks.

We have been keeping the overflow of our storage in a warehouse in town that Jason’s dad owns. Since we need to move our storage out of there for a wonderful project that I won’t discuss at this time (but eventually I will announce it here), we settled on expanding our cement pad under our old shed and replacing it with a larger one.  And when I mean “we,” I mean Jason’s grandmother settled on this conclusion and we were pretty okay with the idea. She has a few things down in the same location so we will be now housing some of her storage needs as well.

Our old shed was dilapidated and twenty years old going on ninety. The plywood in the back was rotted and the roof was missing half of its shingles from a summer when I thought it would make sense to pressure wash the moss off of them. I was pretty excited about getting a new shed because suddenly we would be able to use it for true storage, not just the lawn mower and all of my gardening supplies. This DID create a problem as to how we would store our outdoor supplies… so we came to the conclusion that we would actually place two sheds on our property instead of one, since the second one we purchased had a plastic subfloor and is movable so it is not considered a permanent structure for our home owner’s association (score!).

Jason picked up our shed from Sears and the entire thing was in one flat box that was about 7′ long, three feet wide, and about one foot tall. This shed was packed tighter than most of our Ikea furniture! I will tell you at this point Jason realized that this shed had a lot of pieces to put together but not necessarily the amount of frustration he would have to deal with, too.

Because we both work retail and Spring is a busy busy time for us, it took Jason over four days to put the tear our old shed down, then put the new shed together in a period of two weeks or so, never mind the time it took to lay the additional concrete pad. Oh, and also put the secondary garden tool shed together (it is only 6′ by 3′ so it was done in two hours or so).

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So now we are nearly finished. All we (and by we I mean Jason) has to do is shim the front of the new shed since our additional concrete pad is just ever so slightly lower than the original. But then we’ll bolt it into the cement and I can start organizing everything we don’t use at the moment but are saving for the future (i.e. Christmas Supplies, childhood toys, furniture, etc) which will be a tiring project in itself if I need to do any kind of downsizing which I am sure will have to happen.

So we finally finished another project on our home’s to-do list! Now about a thousand more to go.

Birthday.

Today is my 26th birthday! Happy birthday to me!

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Mom, Jason and I went out last night and ate at Cheesecake Factory and I probably enjoyed a little too much cheesecake, but apparently I heard there are no calories on your birthday so that’s good!

Things are going smoothly recently. We still haven’t put Mom’s house on the market just yet. All of the painting is done, and we need to figure out a storage situation for some boxes that won’t fit in our tiny home. I just keep reminding myself that in a year or so we will be looking for our next home, “Dream Home,” as I like to call it, where all of us will have more room to breathe.

Pretending.

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Jason and I took yet another trip (feels like we were just getting used to being home from Las Vegas) to South Carolina with our work truck and boxtrailer to get our moon bounces repaired and we are currently biding our time for the next day or so. It was raining, so we ended up walking the local mall and out of the corner of my eye I spotted a scarf with dachshunds printed all over it in various colors. I was smitten, and Jason knew, and he waited patiently while I went inside the store to purchase it.

The store was Coldwater Creek, which I don’t think is marketed towards my age group — I’ve never been inside one before with the intent to buy something for myself. I went immediately to the register with my scarf and while the employee rung me up, she asked for my zipcode.

“Oh my! Where is that?” in her Carolina accent.

“Maryland,” I said.

“So far from home! Are you visiting family?”

I explained that we were here on business for moon bounces — I had to explain what a moon bounce was, (“those bouncy houses!” was her response to that) and then finally she asked for my last name. I guess she was trying to find a rewards card which I quickly realized that I should have told her there was no possible way there would be one under my name…

And then she asked, “Are you Sharon?” and she rattled off the home address.

I stared at her and then it dawned on me. My late mother-in-law had (has?) a rewards card for Coldwater Creek. I remember taking a look around the store and realizing that yes, this is where Sharon would have shopped. It was comforting and I had wished I didn’t rush to the register so quickly and wanted to roam around and touch clothing and accessories and just think about Sharon for a little.

I shook my head to the employee and said that no, that was my mother-in-law’s name. The employee nodded and pointed to the scarf and said “well you and her both have good taste for shopping here!”

I left the store and felt sad, and I told Jason about the mix-up and we walked around the mall a while longer. I told him I missed his mom and wished she was there.

I think we have this conversation once a week, about just missing her opinion, her gentle reminders and the way she commanded everyone’s attention without even lifting a finger. We talk a lot about what his mom would have done/would have said to something that happened at work, or at home, or even what her suggestion would have been about my own mother.

I wonder if I should have said something, to say that was was no longer a rewards member because she had passed. But I liked the idea of having a moment of pretending she was still living, as if she was still here to take a phone call.

Baking cookies and finding a “normal.”

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The big test was last week, Jason and I left for a few days to fly to Las Vegas for The Rental Show and Mom stayed by herself at the house (more on The Rental Show later, but we bought some pretty cool tents and let’s say that Jason and I are pretty much “rental nerds” and talk about these tents like they are a part of our family). We had previously gone on our snowboarding trip in December, but she was still in her own house at that point so I was worried she would feel uncomfortable alone in a “new” environment since it wouldn’t be the same. Turns out, she was pretty good. I think it was good of her to have time alone without us being there in the evenings. I have to remember that Mom is used to being a loner and that having Jason and I around so much must be a little unnerving at times.

We’ve had a few moments over the past two weeks — a few days where Mom wanted nothing to do but yell about how tired she was and how much her body ached, and especially how “bored” she was. I don’t know how to fix the boredom, and since she hates doctors so much I really can’t do much about her aches and pains either. I have debated a few times about starting up therapy again but I don’t know how she will go for that. Right now, Mom has appointments with her psychiatrist but not a therapist at the same time. I know therapy is the ultimate way to go, and last year we were on a once-a-week program for about two months… but it never lasts long. She always ends up figuring out a way to get out of it. But maybe we need to try again? Third times a charm?

Today was probably the best day since we returned. It was our day off after Jason deejayed at a bar, so we slept in. Mom had left to finish painting the house so we can ready it for sale — and when she returned, we ordered in dinner, baked cookies, and attempted to teach Charlie and Zoey a new trick.

I know things can’t change overnight, and I know this blog has taken a turn on focusing on Mom and our new life with her. I do plan on trying to evolve this blog into more than this, and more than just our home. It will take time. But we are getting there.

 

 

Day 3.

So after months of discussing it, planning for it, cleaning out an entire room of our small house… Mom has moved in.

So far? It’s going okay. Today was probably the worst of the three, where she has been a little frustrated, a little more depressed – but I expected that. I expected this. She can’t be perpetually happy, right? Right?

I read an article called “Jani’s Story: My Child’s Descent into Madness” and I felt akin to Michael Schofield, the father of a now 10 year-old girl who was diagnosed with schizophrenia. He talks about trying to “wear her out” and travels throughout his city trying to keep her occupied and happy. At one point, they are in a toy store and Michael fears what his daughter will say to an employee there, wishing that she would just go away and leave them alone.

I used to have this fear consistently before Mom started taking medication. I would get nervous when the cashier would ask a simple question, such as how she was. Now, I usually fear she will say something too loudly, or maybe something that might be slightly inappropriate for public (such as swear words or being largely politically incorrect). When she gets uncomfortable or more depressed than usual, she will demand that the world has “raped” her and they “use” her for “experiments” and “make money” off of her ideas.

Today was one of those days. I had the day off from work so we spent the day running errands and ended up at the local outlet center to shop. I was looking forward to it because I had been feeling guilty I had to work every day since she moved in — but nothing seemed to make her happy today. She sighed, told retail employees that she was “terrible” when they asked how we were doing today, was depressive about her looks and how tired she was, demanded the world was out to get her, and we drove home in silence. Usually, when she comments I never know what else to say except “I’m sorry,” but she has told me recently to stop saying this.

I can only hope tomorrow will be better.

“No one is useless in this world that lightens the burdens of another.” – Charles Dickins

I think my mom’s medicine may finally be making an impact on her daily life.

The other day, my mother listened to my story about a co-worker who was going through a rough time. Instead of tuning out, she paid attention and said “I wish there was something I could do to help.”

She sat in thought for a little, then decided, “I want to make his family something to eat.”

So we walked around the grocery store until she had decided what she wanted to make, and she refused to buy any off-brand products in order to make it! She said she didn’t want to cut corners and then have them think she was a bad cook.

1. She was interested in cooking.

2. She was concerned about what they might think of her cooking.

These are two opinions that six months ago, mom wouldn’t have cared to think of.

Last night we delivered her meal (a lasagna) and drove down a long dirt road to get to his house. She seemed happy, content, carrying a tinfoil wrapped present of warmth for someone else who might need it.

Success comes rarely to those who have to deal with a family member with mental illness. I am suddenly relieved and more relaxed knowing that these signs should continue to pick up in her daily life. She’s already taken more of an interest in her own self-appearance and makes herself up to go get our nightly coffee together now. Granted, she still believes that there’s an entire world out there is rooting against her. She probably always will think this way. We can’t get rid of the thought process but we can try to change the behavior assigned to it.

There are too many websites and blogs out there that discuss the effects of having a schizophrenic mother– how the daughter no longer has contact with her, how her own life has languished because of a childhood trauma. But there is not one that is out there, promoting the struggle and small successes along the way of living and keeping in contact with someone who is a schizophrenic. They are either too busy with their own lives (which, if they have a family of their own, is understandable) or they are too busy on how their mother will affect their own lives that they don’t continue forward.

I am a daughter of schizophrenia, but I am not going to keep rooting through past history instead of moving forward. As a country, the discussion of mental illness is on the back-burner — if we don’t start talking about our stories on how we are trying instead of how we tried then we’re not going to get anywhere.

I’m going to try and post more about our failures and successes here each week as we move forward with mom. I’ve realized there are too many questions and not enough answers out there on the web — for the past two years I’ve been reading, reading, reading, and coming up even more frustrated than when I started. I hope that maybe a post here or there can help someone else compare their own struggles with ours, and realize that there is always light at the end of the tunnel — we just need to keep moving towards it.

 

My gift from Santa…

…is a fridge!! We ordered it yesterday and it should arrive at our local Sears store this coming tuesday. This is the one we picked out because it was probably the best deal you can find for a simple french-door refrigerator.

 

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Obviously, I would love to have something more extravagant– but knowing that we aren’t going to live here permanently, I don’t want to pick out the fridge of my dreams only to have to say goodbye to it in a year or so.

Step 1 of the future kitchen renovation has started! Well, the easy part has.

Hello, 2013!

After having a year filled with planning our second wedding which pretty much halted everything here at STC, I don’t see 2013 being any less busy. There are some exciting things in the making that will absolutely change my outlook on life.

As usual, the start of a new year gives off the idea of having a new slate so resolutions are in order. Most include organizing, cleaning, time management, etc. but it is something that always needs work!

We just returned from our annual snowboarding trip where I challenged myself to get off the bunny hills and really explore the sport. Two things happened: I became extremely sore but extremely relieved. I faced a huge fear and conquered it.

So here’s to a year of many challenges that I need to conquer. 2013, I’ve been patiently waiting for you.

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