Education and Epilepsy – Surgery via Twitter!

Tuesday morning I could not tear myself away from my Twitter feed. The doctors at Aurora Regional Epilepsy Center located at the Aurora St. Luke's Medical Center in Milwaukee, Wisconsin performed a brain surgery and tweeted live updates. Geoff Nestor, who has epilepsy which is not controlled with medications, was the brave subject of Aurora's first epilepsy surgery on Twitter.

The Social Media Director of the hospital and the Digital Communications staff were the ones actually doing the tweeting (surgeons are good but I don’t think they can tweet and cut at the same time!).

Robert had his own epilepsy surgery in the early 90s (which was way before Twitter). Unfortunately, Robert's surgery did not cure him of his seizures but it was interesting to compare what I was reading yesterday to the stories Robert has of his own surgery. He remembers being awake during the surgery and being shown flashcards and asked several questions about them. Geoff was also awake during the surgery, answering questions, giving shout-outs to his wife and two kids and shown images from a laptop instead of flashcards.

During the surgery, information about Epilepsy was tweeted as were comments from Geoff and his doctor, Dr. George Morris and neurosurgeon, Dr. Shekhar A. Dagam.

Did you know?

The brain tissue itself does not have the ability to feel. When we have a headache, it's nerves around the brain we're feeling. (Dr. Dagam)

The brain makes up 2% of the body's weight and receives 20% more blood flow than any other part of the human anatomy.

Mortality rate among people with epilepsy is 2 to 3 times higher than the general population.

Up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures).

After surgery, 70% of patients are seizure-free, with 85% seeing a significant reduction in seizures.

In over 30% percent of patients, seizures can't be controlled with treatment. Uncontrolled seizures may lead to brain damage and death.

Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.

Federal dollars spent on epilepsy research pale in comparison to those spent on other diseases.

I am grateful for the advances in technology which not only medically help but also help educate about epilepsy and other conditions! Read more about the surgery here.

Holding a Care Facility Accountable

It’s a fine line between advocacy and being known as That Woman or Pain in the Rear (or worse). It’s not that I care what I’m known as (frankly, I’d rather these care facilities be on their best behavior because they think I might just cause some trouble for them). What I don’t want is Robert to suffer the consequences of my being pushy so I pick and choose my battles.

Robert’s ISP meeting was held last Thursday. That’s “Individualized Service Plan” for those who don’t yet speak Care Home Code (don’t worry if you don’t – I’m still getting used to these acronyms).

The night before the ISP, I hunkered over the first ISP and reviewed my notes from the months after Robert’s move-in. Reading of the struggles when Robert first moved into New Home was depressing but I wanted to focus on what objectives were set out for Robert at that time and how he seemed to be accomplishing them. I also made a list of issues to discuss with New Home so they can do a better job and be held accountable (the Regional Center and his Recreational Therapist were involved in this meeting so there were witnesses!). I’d love to bring up all the problems I want solved but decided to focus on what can be fixed now.

The House Manager was not invited to the meeting which I found odd. Nurse Ratchet was not at the meeting which I found to be a relief. The person who is probably the least hands on with the clients (we’ll call her Ms. Z.) was at the meeting and her lack of knowledge about what actually goes on at the home became evident very quickly.

Her priority is not the “consumer” but the paperwork she has to complete and send in to her boss.

Robert’s morning routine. Robert dawdles. He’s on the OCD side. He takes 2.5 hours to get ready in the morning (grooming, dressing, eating, grooming again). He’s missed the bus a few times but the House Manager worked with me to create a system that works for Robert and he hasn’t been late since.

Ms. Z. insisted this was still a problem and suggested a visual chart for Robert so he could see all of his morning activities and when he’s supposed to do them. Did she just take some sort of continuing education class that presented this as the Greatest Idea Ever? A chart Robert has to spend time looking at and deciphering is only going to delay him further. I explained that House Manager came up with a good solution and that is working. The problem is fixed!

She wasn’t satisfied. She wanted to write down a plan (other than the one I told her about, apparently). Someone suggested Robert shave when he showers at night. This will disrupt his Jeopardy and Wheel of Fortune watching, I said, but then it was suggested we get him DVDs of those shows so he won’t miss them.

Ms. Z. sat with her pencil ready to write down this complicated, expensive and unnecessary plan. I reiterated this is no longer a problem to solve but if they really want to try something else, then that would be fine. I only agreed because (1) the television doesn’t work right now so Robert can’t watch his shows anyway and (2) the other plan will actually still be in effect and this new process will not interfere with it.

Objectives for Robert; Objectives for New Home

Robert has his second ISP meeting today at New Home. This is where everyone involved in his care (nurse, house manager, supervisor of house manager, speech therapist, regional center rep and me) decide on his “objectives” for the next three months. The last one was just after he moved in to New Home last February (which I realize was more than three months ago but, after the first meeting they wait for the client’s birthday month to have the next one.).

The objectives from the February meeting and the results so far:

1. Behavior modification regarding changing his dirty clothes and putting clothes in the hamper to be washed. Robert is doing much better with this although he still insists his jeans are clean when they are not. I make sure I set out a new pair of jeans when he’s at our house or when I visit him through the week. I’m not convinced New Home does this (even though they’ve been asked).

2. He is slightly over the ideal weight so they will watch his diet and create an exercise program with staff. Robert lost some weight just from eating different food than his last place (yes, that meant new jeans for him again). Exercise program? Hmm . . . I haven’t seen any evidence of this other than when I take him shopping for new jeans (you would think I would have every possible size by now)!

3. Learn his new address and phone number. Robert did learn his address! I was very excited to hear him recite his address during a recent visit. He was pretty tickled with himself too. I don’t think he knows his phone number but he knows mine which is more useful for him.

4. Help with cooking twice a week and plan and shop for meals twice a month. I will be shocked if they tell me today that Robert has gone grocery shopping with them. Sometimes Robert does help set out everyone’s napkins and bibs which is a nice task for him. (Cooking is too big of a reach for him but I’m happy with this small amount of involvement).

My objectives at the time were for New Home to get Robert’s medication schedule correct (they finally did) and for the Regional Center to get Robert into a Day Program (which has been a complete success!).

It will be interesting to see today what they tell me as far completing these objectives (since I’m a little dubious about their reports) and what new objectives they come up with for Robert.

My new objectives for New Home are for them not to run out of things like toilet paper and protective briefs!

Caregiving Training Wheels

Now that I am a caregiver for my youngest brother, Robert, I have realized my role in the family throughout my life has been that of caregiver. Providing care for Mom when I was a teenager and she was suffering horrible, debilitating, suicide-attempting depression and then again twelve years ago when she was terminally ill with liver cancer, were really just the training wheels of caregiving for me.

My first book Forever a Caregiver covers the “training wheel” experiences, the struggle to accept my family role as caregiver and finally appreciation of my family and acceptance of my role. Caring for Robert, working to help other caregivers and writing about these experiences could not have come about if I hadn’t fully accepted and appreciated my family and my caregiving role.

I wanted to give you a glimpse into Forever a Caregiver and have included an excerpt below. (If you are interested in purchasing you can do so either through Lulu or by sending me an email and I can ship to you with a personal message):

“More than a week passes after Mom’s birthday celebration when I finally call to check on her. It’s odd that Mom didn’t call me yet and it is so easy for me to let time slip with all the activities the kids are involved with, working, trying to find time with Richard – ah, life gets so busy. I usually check in with Mom more often than once a week so am feeling guilty about not calling sooner. Guilt is as much a part of me as my blue eyes and freckles, permeating everything in my life. Wins, losses, relationships, disappointments and successes. All are seen through a shroud of guilt. I love to win but feel guilty someone else lost. If I lose, I feel guilty I didn’t try hard enough to win. Am I being a good wife to Richard? Are the kids getting enough of my time? Did I do a good enough job with that work project? Guilt, guilt, guilt.

“I have learned to live with guilt by wadding it up into a little ball and pushing it into a tiny, dark corner of my psyche, not letting it get the upper hand when making decisions but when I don’t call Mom at least once a week, I know I will experience guilt. Guilt springs up, dances around wildly and stomps on my stomach.

“I tell myself this is normal.

“After the kids have been fed and have found a movie to entertain them this summer evening and Richard finds something to watch on the Sci-Fi channel, I snuggle into a corner of the couch for my visit with Mom. I ask her how the doctor’s appointment went. She hesitates and is clearly reluctant to tell me anything which is always a very bad sign. I press because I know she is holding something back and will eventually tell me if I ask her enough questions.

“Succumbing to my relentless barrage of questioning, Mom tells me that she actually had a couple of appointments last week. She first saw her doctor who, after she explained her stomach pain, ordered an ultrasound for her gall bladder. She went to the ultrasound appointment and the technician scanned her entire stomach, not just the small area of her stomach they had done before when she had gallstones. Mom said she knew there was a problem by the look on the technician’s face. Mom’s concern was confirmed when the technician called a doctor into the room and the doctor informed Mom that her liver was enlarged and covered with numerous suspicious spots. He immediately ordered a chest x-ray which then showed a mass on her upper right lobe.

“The doctor told Mom he is certain she has cancer.

“I haven’t called her in a week. It’s only been a week! How can this happen in a week?”

Have you had trouble accepting your role in the family? Are you the caregiver in the family or is that role filled by someone else? Have you ever thought your childhood experiences were the training wheels for what you are going through now? I'd love to hear your thoughts.

Inspection Time!

There is something wrong with the Care Facility system if the only time facilities are in compliance with all of the state rules and regulations is the two month window of time in which they will be inspected.
From what I can piece together, New Home is about to be inspected. Apparently, these inspections are a “surprise” although the term is used very loosely considering they’ve known it was about to happen since at least July, the inspection last year was in September and I suspect they are done at the same time every year.

Kind of like Christmas is a surprise when it rolls around December 25th every year.

The last time New Home was so clean was during the budget debates when a few legislators had selected New Home to visit (apparently to see where the government funding was going and what effect slashing funds would have on these types of facilities). A last minute switch meant the legislators didn’t pay a visit but New Home did look pretty spiffy for a few days.

With the inspection about to happen at any moment, there is no more talk amongst the aides about figuring out how to make a cheaper, homemade version of Ensure. Training on food preparation rules is the new focus and is all of a sudden being given to people hired since the last inspection (a year ago).

I suppose it’s a little like me cleaning my house from top to bottom before having guests over for our annual Thanksgiving Dinner.

Oh, wait.  No it isn’t because I am not getting paid by the state and a regional center to take care of six disabled adults and to give them quality care, a clean house and nutritious meals.

Although my Thanksgiving Dinner is pretty awesome!

But I May Need It Someday!

My heart races.

My stomach tightens.

My palms are moist.

Sweat drips down my face.

You guessed it – I’m cleaning out the garage! Why do I have such trouble throwing things away? I physically react as if I am in a panic (although the sweating could be from hot flashes – I can’t be sure).

My husband could literally throw away everything we own and it wouldn’t bother him a bit. I blame his military brat upbringing where he had to move every couple of years (to different countries no less). His family invented the word “minimalistic.” (Although, I think even they would admit to some regret about tossing boxes and boxes of comic books – some undoubtedly worth a bit of money today).

I look at something and think believe know that I will one day use it again. If it’s something we bought in the last ten years, why throw it away? We spent money on that so why would we want to buy it again when we ALREADY HAVE ONE? You’d think I grew up in the depression as much as I think we need to squirrel away every 25 cent item I run across (and, no, I am not that old, thank you very much. I may be old enough to have hot flashes but I’m certainly not old enough to have lived through the depression). That recession in the 70s may have really messed me up, though . . .

The point is to make room for Robert, so I can no longer conveniently keep whatever I want just because it happens to fit in the garage. I dream of buying a bigger house so I can fit all my stuff in it but realize I will keep accumulating more stuff no matter the size of the house!


How can I throw this away?



I force myself to go through boxes and file cabinets and bags full of knick-knacks that I one day will use or papers that we may have to produce if our utility company ever claims we didn’t pay them in 1995 or school papers the kids brought home in grade school. (Don’t tell hubby but I’m keeping the school items! Certainly that seems reasonable, right?). I relented and tossed a few craft projects that Daughter had created. One was a Giant “R” decorated like a ladybug. It was so adorable but even she insisted I throw it away. Before doing so, I took a picture of it which will only take up a little bit of electronic space (yay!).

Intellectually, I know it’s a good idea to purge and not keep everything one has ever owned forever. Just try telling my racing heart and upset stomach that!

Forever a Caregiver

Well, it took me ten years but I wrote a book! This is my first book and I could bore you with a gazillion disclaimers (just ask those closest to me), but instead I want to tell you about it and how I came to write it.

Mom was diagnosed with cancer in July twelve years ago and within two months had died. I think I remember every moment of that two month period of my life. I helped care for Mom during this time but it wasn’t the first time she leaned on me. She had debilitating depression when I was a teenager and I was her support then, too. There were a few times of also caring for Dad but, in my family, loyalty to both parents at the same time was not an option. As the oldest girl with two younger brothers, caring for Mom and Dad was up to me. (There are many men who are caregivers but, in my experience, if there is a girl in the family – the caregiving role goes to her.)

After Mom died, I felt the need to write about our experiences. I wanted people to know that families can be messed up and dysfunctional but it’s your family. Don't worry, this is not a book about forgiveness – there is no need for it. It’s a story about coming to appreciate my family crazy as it was (and by crazy, I mean periods of actual crazy) and also accepting my role in the family (as the caregiver).

For years, this book was bursting out of me and I wrote it the best I could. I changed the title several dozen times (I have pages of potential titles to prove it) but nothing seemed to fit.

Until I started caring for Robert.

Then it hit me – I was caregiving for Mom all those years although I didn’t even realize it at the time. I accept that as my role in the family. In fact, I have found profound fulfillment from that caregiving role so wouldn’t change a thing.

I am Forever a Caregiver.

This is my first book so forgive me if it’s not the greatest book you’ve ever read (did you think I wouldn’t slip in at least one disclaimer?). One of my favorite quotes (and I’m terrible about remembering who said it) but it is something like “I may not be able to write a book as well as Shakespeare, but I can write a book by me.”

I’d love for you to purchase my book, Forever a Caregiver (you can find it here or on the sidebar), and would love for you to tell me what you think. Have you had to forgive your family or do you accept them for who they are? Do you struggle with your family roles? I’d love to hear about your own family experiences.

Thank you so much for indulging me in this bit of shameless self-promotion.

Just Call it a Day When Even Baking Chocolate Chip Cookies is Difficult . . .

I haven’t baked cookies in a while but, by now, I have baked a few batches in my life – it’s really not that hard. Aside from the occasional (okay, always) ability to set off the fire alarm (keep in mind, with very few actual fires), I can make a pretty tasty chocolate chip cookie.

Today, the universe really tried to conspire to stop me from making these cookies, tough! (I don’t know, maybe the universe thinks I should lay off the sugar).

While at Target stocking up on essentials like milk, bread, toilet paper and erasers (hey, Target has everything), I picked up some chocolate chips. I love Target so was just leisurely going down the isles, knowing Robert was safe at home with Hubby and was probably watching television while working on his word search puzzle.

As I was nearing the end of my list, my heart stopped. Crap! I forgot to give Robert his 2:00 p.m. medication. It is now 3:00. Oh, crap! Not only did I forget but it’s in my purse because I thought I was being brilliant to take it along with us to his haircut appointment in case we were unexpectedly delayed. Now I am an hour late giving it to him and in the middle of Target with a cart full of perishables. Crap!

My idea to call Hubby and have him use tomorrow’s 2:00 p.m. meds for today fell short because his cell phone decided not to work at that moment. Ack! I’m not far from home so make the decision to check out and rush home. Once home, I leave everything in the car, run into the house and give Robert his Depakote pill. Phew. He was in the same place I’d left him which means he probably didn’t have a seizure. Hubby was oblivious to my panic because he didn’t even know I tried to call him. Darn cell service!

Once I calm down and after making dinner, I begin to make the chocolate chip cookies. Robert already had chocolate ice cream for dessert so he is indifferent to my kitchen activity. Besides, he’s busy laughing at people bonking themselves on the head on America’s Funniest Videos.