The Calendars are Here! The Calendars are Here!

After pairing the artwork of Pegi Foulkrod and the Words of Comfort by Denise M. Brown in a 2015 calendar and pushing the “purchase” button, I started to panic.

The picture doesn't clearly show the words but
they show up on the calendar. August words:
"Believe in yourself - others will follow."

I woke up in the middle of the night thinking I forgot to have it printed in color.

I had a nightmare that the text of the Words of Comfort didn’t show up properly under the art.

I worried I would own 50 beautiful wall calendars intended to be a fundraiser for CareGiving.com and no one would buy them.

And that was just the first day!

Okay, now that we all know how neurotic I am . . .

The calendars have come in and they are lovelier than I could have hoped.  Each month is an 8 ½ by 11 page which showcases the tender art of Pegi with excerpts from Denise’s Words of Comfort books. 

As I flip through each month, I am amazed at how well Pegi’s art works with Denise’s Words of Comfort.  They are made to be together. 

It is magical. 

Better yet, in the words of Robert, it is “excellent.” 

Denise's words:
"You have so much to dream about. Dream."

The calendars are a way to raise money for CareGiving.com.  Each calendar is $15 and half of that amount ($7.50) will go directly to CareGiving.com.  So far, we have sold a third of them.  I hope to have them all sold by year end so I can send Denise a Happy New Year gift of $375 from her supporters!

I guarantee you will not regret purchasing this 2015 calendar!

Thank you for your support! 

Note to Self: Get it Together!

For the past few days I have been trying to write this post in such a way as to not come across as an ungrateful, spoiled brat. 

Hard to do when I have been exactly that.

As everyone knows, I love to decorate for Christmas. (If you don’t know that then either we haven’t met or you’re not paying attention.)  I don’t just love to decorate; I aspire to be the talk of the neighborhood.  I compete with neighbors to have the most lights, the most blow up decorations, the brightest house in the court. 

I don’t know what it is like getting through December without having to flip the breaker switch when I want to use my hair dryer.  I have been known to put one too many strings together outside – enough to blow the whole display. 

Does that deter me???  Ha! Of course not.

Here it is December 15 and I only have a few decorations outside! I could blame the weather (and believe me, I will) but it isn’t just that.  I have been busy at work and busy taking care of Robert and his increasing needs. I have had help from the kids in the past but they are out of the house and living their lives! How dare they!

Plus, it has been raining like crazy!  Good for the California drought; bad for my Christmas lights.

The inside decorations even got a late start.  I have been telling myself that it’s okay.  My deadline is December 24, after all. 

We have a large outdoor shed with our Christmas decorations. The shed is the size of a bedroom – a bedroom! Full of Christmas decorations! Which is awesome although quite daunting when my to-do list is ridiculously overloaded and those aforementioned kids are no longer around to haul boxes inside in assembly line fashion.

I had the brilliant idea of letting myself off the hook.  I’ll take it slow, I said.  I will just do what I can as time allows. 

Then the calendar turned to December 2^nd and I was back to “OH MY GOD! I HAVE TO DECORATE THE HOUSE!”

I hauled the boxes in, separating inside and outside décor.  Having the rain helped me prioritize: inside first.  Richard and I took Robert to the local hardware store to buy not one but two Christmas trees. I love having two trees – I had two growing up and think it just stuck in my brain that was just the right amount to have. (Of course, this isn’t the seventies so our tree is not the classy artificial white one with red ornaments.)

Richard and I usually get a very large tree for the front room and a smaller one for the family room where Robert spends most of his time. I mean, we have to leave room for Robert.  I get it - I'm not crazy, you know.

This year, I had every intention of getting one huge tree and one smaller tree but realized we needed to get two smaller trees. Richard’s back was already killing him when we were picking out the trees and I could barely stand them up to find the best one. Robert found the one for his room in two seconds flat – his were easy to stand up and turn around.

“That’s a good one," he said after the second spin.  Sold!

Richard and struggled with the ten foot trees and I finally looked at him and said we should get a smaller tree.  Let’s get a six foot tree.  That way, we can get both of them in the house without causing enough pain to warrant a three day recovery period. It would be easy to set up and decorate. Sold!

Both trees actually fit on top of Richard’s SUV and neither fell off! (Not that that’s ever happened to us.)

We got them in the house and set up and took our time decorating them. Just because we could. (And, you know, because the kids weren’t around. Kids – growing up and living their life; the nerve!)

But during this week, I found myself calling the living room tree my “Charlie Brown” tree.  Yes, I was calling my six foot full tree a Charlie Brown tree.

Even I knew how ridiculous I sounded so didn’t dare say this out loud. Goodness! How ungrateful could I be? I have two six foot trees in my house!

Spoiled. Rotten.

As we put on the decorations, both trees came to life.  Robert sat in his wheelchair and put ornaments on the tree.  I found a holiday music station on the television and we listened to classic holiday music. 

Robert, much to my surprise, even sang along to a song or two!

We drank hot chocolate and busily unwrapped the decorations and slowly but steadily emptied the boxes. 

The trees are done, the indoor décor boxes have been put in the shed and my house is starting to look like Christmas.  The outside still needs work but that will come along.  I still have time! If we don’t win the unofficial (aka, existing only in my head) neighborhood decorating contest, that will be okay. 

I think.  Unless my Spoiled Rotten self returns. 

Oh, I better get back out there – rain or no rain.

There are some traditions I just can’t give up! 

A Caregiving Calendar

What better way to end a Caregiving Progressing Holiday Blog Party than with a gift? 

2015 Caregiving Calendar

Pegi Foulkrod and I have created a 2015 Caregiving Calendar pairing Pegi’s artwork with words of comfort from Denise M. Brown, of CareGiving.com. 

Pegi’s artwork absolutely takes my breath away.  It is poignant, wistful and delicate and touches me deeply.  Denise has been giving her readers words of comfort for years and they can also be found in three books which I highly recommend.  You can purchase one or all three here (I suppose you could buy just two but go for them all!).  Denise’s comforts always seem to fit just what people need, when they need it.  She’s talented that way! 

I wanted to combine these two talents and since I love calendars and they make a terrific holiday gift (hint, hint), we have created a gorgeous calendar with lovely pictures and comforts for all year! 

And, because it is the season of giving and generosity, Pegi and I are donating half of the price of the calendar to CareGiving.com. (Cost to produce the calendar is more than that but we wanted to keep the price down and to give CareGiving.com as much as we could!)

This beautiful calendar sells for $15 per calendar.

Quantities are limited so get your order in fast! (I always wanted to say that.)  J

Purchase the calendar through my PayPal (click on the button below) and either direct message or email me your address.  I will ship the calendars as soon as I have them which should be within a week.  I’m hoping the postal service cooperates and I can get calendars shipped out in time to give for Christmas gifts!

Wishing everyone a happy and delightful holiday season!

Blessings, Miracles, Blog Parties and Aha Moments

Note to readers: I am participating in the CareGiving.com Holiday Progressive Blog Party.  There are several people participating, (all of whom have wonderful blogs) and we will be stopping by to read each other’s stories and showing support through this holiday season. 

As promised!

The party starts today and I promised hot cocoa and tiny marshmallows to everyone! (Okay, so it is a virtual cup but just imagine how yummy it would be with a candy cane!)

Welcome to the party!  I want to share this story about blessings to kick off the party.

The other morning while driving Robert to his Day Program, I was listening to my morning talk radio and Robert was working on his Word Search puzzle.  I have been concerned about Robert lately because he has said odd things that make me think his brain is going down a path I really don’t want to witness. 

At Thanksgiving, Robert asked me, “What’s my brother’s name?  The one married to Liz?”

Taken aback, I looked at him like he was from Mars and said, “You mean Rich?”

“No, my other brother."

We don’t have any other brothers.  Rich is it. Yes, I call Rich “Other Brother” in my blog but I don’t think Robert has been reading my posts (in fact, I am sure of it – he doesn’t understand computers other than it is the thing where people read about him.)

Another morning while I was driving, Robert asked me what he was supposed to do next on his Word Search.  I could be very dramatic and say this almost caused me to get into an accident due to the shock of his question but everyone who knows me, knows I drive like a great-grandma so that wouldn’t be very realistic.

You get the point.  There is something going on with Robert.

Of course I worry about this.  Add to these odd experiences the fact that Robert has had two days in a span of three weeks where he had dozens of seizures within a few hours. Yikes!

What the heck is going on? 

I worry and fret and contact his neurologist (and in the meantime, also have him put on antibiotics because his breathing is labored, he has congestion and he is showing usual signs of getting pneumonia).

So all this is swirling in my brain driving Robert to Day Program.  While doing his Word Search, Robert says that he just got a blessing from God. 

“That’s nice.”

I go back to listening to my radio program while my brain thinks about upcoming doctor appointments and odd behaviors and Christmas.  Oh, yes, Christmas is just around the corner and we need to get the tree up, decorations out of the shed, shopping finished. . . I don’t even know why I listen to talk radio – the chatter in my head is enough to amuse anyone. 

Robert tells me he got another blessing from God when he read one of his words.

And another.

And another.

I pay attention to him now.  I wonder if this is an aura before he has a seizure. I ask him why he is saying he is getting a blessing.

“I got a blessing from God when I read that word.”

Well, okay.  But WHY?  What are you talking about?  What does it feel like?

“I just got another blessing from God when I read that word.”

I DON”T UNDERSTAND!

I try another tactic.  Do you feel something in your head when you get a blessing? 

“Yes.”  Ah, we’re getting somewhere.

“Actually, I feel it all over.”  Oh. Hmm.

He continued to do his Word Search.  “I didn’t get a blessing reading that word.”

So you are telling me you just randomly get this feeling in your body and it is a blessing from God?

“Yes.”

I slowly come to the realization that I just may have to accept – on faith – that Robert randomly gets blessings. A friend of mine recently wrote about the small miracles she experiences in a day and I can definitely see those types of things (it stopped raining when I was driving or a stranger was kind or all the lights were green) as miracles or luck or great karma. 

I wonder if these blessings are little miracles that Robert is experiencing (while his crazy sister is analyzing him and the blessings and trying to rationally explain them).

Maybe they are just blessings.  Maybe he really does feel blessings from God in his entire soul and being.

Wow.  I still don't understand it but how awesome is that? 

Epilepsy Awareness Month Recap

I thought I was going to take a break from blogging for a day or two after a month of posts but I can’t stop!

Okay, this will be short and there won’t be 30 minutes of video to watch (“Phew!” says Other Brother, who hasn’t quite caught up yet).

When I set out to do this video project, I wasn’t confident I could do one for every day.  I wanted to but wasn’t sure if I could pull it off (hence, all the disclaimers in the first post).  It is important to me to do something every November in support of Epilepsy Awareness Month and creating the videos seemed to be the most personal way I could explain the impact of epilepsy.  

In a third of people with epilepsy, seizures are uncontrolled.  Robert is part of this group and these are the people I want to focus on. As this group ages, what are the consequences of all those uncontrolled seizures, head trauma, medications and surgeries?

Robert is just one example of what can happen when seizures remain uncontrolled.  My focus on this is not meant to scare people who have uncontrolled epilepsy but just the opposite: Let’s focus on these difficult to control cases so we can raise awareness about what epilepsy does to a person over a lifetime. Let’s raise some money so research can be done on this group.

Let’s not forget about these people.

Let’s find a cure.

Let’s not give up.

Robert has not given up – not in the slightest.  He prays every day for his seizures to stop. Robert truly believes his seizures are getting fewer and he has hope and faith every day.

Every. Single. Day.

If Robert can have hope every day, if Robert can get up every day and be positive in spite of his legs not working as well as they used to or his labored breathing making it tough to talk sometimes then I can post a video every day for Epilepsy Awareness Month.

The links to each post are below. Please let me know if you have any more questions for Robert or about epilepsy and I will be happy to post a follow up video.

After all, I don’t want my camera to get rusty!

Epilepsy Awareness Month Day 1: Kick-Off to Epilepsy Awareness Month 2014

Epilepsy Awareness Month Day 2:  Surgeries and Seizures

Epilepsy Awareness Month Day 3: The Decision to Call 911

Epilepsy Awareness Month Day 4:  Just Two Guys Talking

Epilepsy Awareness Month Day 5: Talking About Medications

Epilepsy Awareness Month Day 6: Advocacy and Fun

Epilepsy Awareness Month Day 7: Everyone Loves a Parade

Epilepsy Awareness Month Day 8: Seizure Triggers and Routines

Epilepsy Awareness Month Day 9: Impact of Epilepsy on Caregiving

Epilepsy Awareness Month Day 10: It’s a Small World

Epilepsy Awareness Month Day 11: Driving and Epilepsy

Epilepsy Awareness Month Day 12: Epilepsy and Working

Epilepsy Awareness Month Day 13: Enjoying the Simple Things

Epilepsy Awareness Month Day 14: Ack! The Caregiver is Sick

Epilepsy Awareness Month Day 15: Friendships, Bonds and Blessings

Epilepsy Awareness Month Day 16: Epilepsy and Religion

Epilepsy Awareness Month Day 17: Photo Surprises

Epilepsy Awareness Month Day 18: Caregiving as a Team

Epilepsy Awareness Month Day 19: The Careful Dance of Sickness

Epilepsy Awareness Month Day 20: Memories

Epilepsy Awareness Month Day 21: Managing Incontinence

Epilepsy Awareness Month Day 22: Tips for a Successful Respite

Epilepsy Awareness Month Day 23: Spreadsheets, Spreadsheets and More Spreadsheets

Epilepsy Awareness Month Day 24: Mood and Medications

Epilepsy Awareness Month Day 25: Epilepsy and Dental Care

Epilepsy Awareness Month Day 26: Epilepsy Rant

Epilepsy Awareness Month Day 27: Gratitude

Epilepsy Awareness Month Day 28: Brotherly Love

Epilepsy Awareness Month Day 29: Q&A with Robert and Trish (Part 1)

Epilepsy Awareness Month Day 30: Q&A with Robert and Trish (Part 2)

Epilepsy Awareness Month Day 30: Q & A with Robert and Trish (Part 2)

It is the last day of Epilepsy Awareness Month!  I have learned so much from Robert this month and hope we helped others learn about epilepsy and about Robert. 

I am very grateful to everyone for watching the videos, reading the posts and supporting all of us in our mission to raise awareness not just about epilepsy but about the long-term effects of uncontrolled seizures. Robert, Richard and I greatly appreciate your support.

The last few questions were all for Robert and he took his job of answering them very seriously. (Of course, there were laughs and dogs thrown in as well.)

Question from Rachel: If you didn’t have epilepsy, what job would you want to have?

Robert thought about this and decided he wanted to work in an office but not in insurance sales (sorry, Dad).  Robert thinks he would have worked with numbers, like Other Brother.

Question from Rich:  What does it feel like to have a seizure? 

Robert talked more about the aura he feels before a seizure and how he is sometimes able to “fight them off.”  I have no doubt Robert has the strength to do this!

Question from Rich: What would you have done with your life if you didn’t have epilepsy?

Robert thinks he would like to read the bible more. He also mentioned wanting a book from Dr. Charles Stanley (a church program he watches every Sunday).  I guess I know what someone is getting for Christmas!

Question from Pegi:  How do you manage to stay excellent most of the time with all of your challenges? What advice would you give to other chronically ill people on how to maintain such a positive attitude?

Robert’s answers to both of these questions should surprise absolutely no one.  Prayer is what helps Robert and is what he recommends others do as well.  (Robert probably should have been a pastor!)

Question from Richard: How do you do fight off a seizure? 

Robert’s answer – he uses his strength and prays. 

Yep, Pastor Robert has a very good ring to it. 

Thank you again for watching, reading and supporting us this month. I hope we accomplished the goal of explaining the impact epilepsy has had on Robert.  It has been significant but it definitely has not been all bad as one might have expected. 

Special thanks to Robert for sharing his life with us.

Epilepsy Awareness Month may end today but our mission continues.  Please help us spread epilepsy awareness and education by sharing these videos and talking about epilepsy.

Thank you!   

Epilepsy Awareness Month Day 29: Q & A with Robert and Trish (Part 1)

Robert and I are answering questions for the last two days of Epilepsy Awareness Month. I was worried before starting this project that Robert would tire of doing all these videos but he is enjoying every minute of it!  (I should have realized what a ham he is!)

We had great questions which Robert and I answer on the video.  Thank you for submitting the questions! The questions and a brief summary of our answers are below. 

Question from Elissa:  Has your recent stay in the nursing facility taught you new things about epilepsy? If so, what? PS: Thank You (and Trish!) for your outreach and education! It's awesome that you're both doing this.

Answer: Robert answered this question and talked about how the nursing facility helped him to walk better. So true! Robert’s mobility has significantly declined and the physical therapy given to him in the SNF was a huge help.

Question from Teresa: What has dealing with epilepsy taught you?

Answer: Robert gives a terrific answer to this question. (He usually surprises me with his answers and this was no different.)  Robert said he has learned to live day to day and to pray for no more seizures.

Question from G-J:  What information would you give a newly diagnosed young adult and their family?

Answer: I fielded this question and want to list the resources here that I discuss in the video. I also stress that it is important to learn as much as possible about the type of seizure a person has and the medications the person with epilepsy starts taking. I would refer someone newly diagnosed to several epilepsy organizations.

For education and resources:

The Epilepsy Foundation

CURE Epilepsy

For support:

Chelsea Hutchison Foundation. Provides help and support to families dealing with epilepsy. They are particularly focused on teens and young adults.

Danny Did Foundation. This organization works to raise awareness about SUDEP.

Especially for teens:

The Epilepsy Squad.  This group is near and dear to my heart.  They are a youth initiative working to decrease the stigma of epilepsy. You have never met more DETERMINED young adults.

Question from me:  Does it hurt when you have a seizure?

Answer: Robert answers that it does not hurt when he has a seizure. (Some people do experience pain during a seizure and some cry out during a seizure making it sound as if they are in pain. I am relieved to learn Robert does not experience pain – I wondered about that recently when he made noises as if he was in pain during a recent seizure.)

Question from me: Tell us about your helmet.

Answer: Robert demonstrates putting on his helmet and talks about why he uses it.

Question from Richard:  What do you do when someone has a seizure? 

Answer: I answered this question first, using the information from The Epilepsy Foundation as a guide. Safety is critical. Do NOT put anything in the mouth – ever! Robert added that he likes it when we tell him what happened during a seizure.  This was great information from Robert and something I hadn’t thought of before. Of course, I knew the neurologist needs to know what happens but it didn’t occur to me that Robert was curious about it.  (It seems obvious now that he says it, though.)

If anyone has more questions or a message for Robert, please leave them in the comment section.  Part 2 will run on the last day of Epilepsy Awareness Month! 

Thank you for your support in spreading epilepsy awareness and education!

Epilepsy Awareness Month Day 28: Brotherly Love

My first memory, as impossible as it seems, is of my brand new baby brother being carried through the back door of our two-bedroom, white house in Omaha.  We moved out of that house when I was entering the first grade and we forever after referred to that house as “the White House.”

I could not believe my parents were bringing me – at two years old – a real, live doll of my own to play with and care for and love.  Mom later told me she would wake up in the morning to find me in the new baby’s crib playing “mom.”  I fed him, held him and played with him for hours on end.

This was Other Brother’s arrival into the world, not Robert’s.

Robert arrived a few years later and even though I was five years old at the time and probably should remember another new bundle of joy being brought into the house, I have no recollection of it in the least.  Robert’s entrance into the world was memorable for Mom, however – he broke her tailbone.  The doctor also actually used forceps to help deliver Robert (yeah, I can’t believe that is an actual tool sometimes used during childbirth).

Robert literally came into the world kicking and screaming. (I’m pretty sure Mom was too).

Ever since finding out how traumatic Robert’s birth must have been, I wondered if that somehow contributed (or caused) his epilepsy.

Despite this rocky start and subsequent years of our young parents doing their best even while they battled depression, Bipolar disorder, substance abuse and Robert’s epilepsy, I remember a happy childhood.

Much of that was because of these two guys.

A goofy moment between brothers

Maybe it was because of everything happening in our household that Other Brother and I forged a strong bond that remains to this day. I wasn’t always close to Robert but that changed once I took over his care. 

I know that Other Brother is someone I can count on for support not only for me but also for Robert.  I know that when the three of us are together there is laughter and love and an appreciation of our time together.  We don’t really know what the future holds for Robert, particularly with his decline and increased seizures, but we don’t dwell on that when we’re together.  (We might joke about it with each other in a sick, morbid humor kind of way but definitely don’t dwell on it.)

We have never really known what the future held for Robert but this uncertainty (and the chaos of a crazy family) taught us to enjoy what we have right now and not to take ourselves too very seriously. 

I cherish the laughter and joking and love when the three of us are together and know that this strong bond was borne out of adversity (including epilepsy). I also know that it remains even when we are not in the same room together.  

My wish for everyone with epilepsy is that they have family or friends that are just as supportive and who will always be there for them.  Adversity is best traveled together and I am fortunate to have my two brothers always by my side.

Other Brother and Robert aren’t known for their sap and mushy ways (they leave that to me, obviously) but I think I detected a “moment” between them during the interview.

Maybe my sappy ways are rubbing off on them!

Epilepsy Awareness Month Day 27: Gratitude

Today is a day for gratitude! Richard, Robert and I share what we are grateful for and wish everyone a very Happy Thanksgiving!

One impact epilepsy has had on Robert is that it has made our family that much closer.  For that, we are all grateful.

We have much to be grateful for! 

Wishing everyone a wonderful day and a year full of blessings.

Happy Thanksgiving!

Epilepsy Awareness Month Day 26: Epilepsy Rant

I am usually a positive person but today has been especially trying. I realize tomorrow is Thanksgiving and I should be espousing everything I am grateful for.  I will. 

Just not today. 

Today I am on a rant. 

Epilepsy sucks.  It is more insidious than people realize.  People who have seizures lose minutes, hours, and days of their life.

Epilepsy has no regard for schedule. Does it care tomorrow is Thanksgiving?  Absolutely not.

Epilepsy changes without warning.  I am used to Robert’s Complex Partial Seizures. He averages 20 – 25 seizures a month. This month, his seizures are out of control.  He has had not one but two days of non-stop cluster seizures (totaling at least two dozen each day).

When it happened earlier this month, we thought maybe he was super excited about our trip to Disneyland.  We (meaning me and his neurologist) couldn’t figure out any other reason for the unusual cluster. I chalked it up as anomaly.

Then it happened again – three weeks later. 

Are his seizures changing?  Are we moving from one or two every few days with an occasional cluster of 3 – 4 to a few dozen in a day? Will this become the norm? 

Who knows!  Because epilepsy is unpredictable and in a third of people with epilepsy it is never controlled.  Never.

Epilepsy kills. Yes, it kills.  Fifty thousand people die annually in the United States from epilepsy (prolonged seizures, SUDEP, and accidents caused from seizures).

50,000!

Epilepsy changes lives. A woman – a kind, wonderful woman – loses her daughter and mother to seizures. A mom takes a low-paying job because it allows the flexibility to support her son who has epilepsy follow his dreams. A mom advocates for the legal use of CBD after seeing her son’s epilepsy continue to be uncontrolled. A man and his wife care for their disabled son and have sat bedside with him numerous times when he was on the brink of death. A confident, empowered woman becomes self-conscience because the of damage epilepsy medications have done to her teeth.

Let's do more research to find a cure for epilepsy.  Let's do more advocacy.

Let's do more ranting. 

Epilepsy Awareness Month Day 25: Epilepsy and Dental Care

Anti-epilepsy medications can ruin a person’s teeth. 

Robert is very comfortable at the dentist

Robert has always been good about brushing his teeth but when he lived independently he didn’t regularly see a dentist.  As we found out this year, the dentist he did see actually did not do very good work (root canals were not properly done, for instance). 

When I took over Robert’s care and he lived in a care facility, he was eligible for regular dental cleanings and check-ups as well as a deep cleaning under general anesthesia.  This made me very nervous and I agreed to it once.  At that time, the dentist said his teeth were in good shape and Robert didn’t need any work done. 

Side rant: How much sense does it make that Robert was eligible for four cleanings per year as well as the deep cleaning every two years yet is not eligible for that while living with me?  I am a reasonable person and would love to know the thinking behind that “logic.”

Anyway, two years later I took Robert to a dental group that supposedly took Medicaid and who proceeded to tell me Robert needed twenty thousand dollars in dental work.  Not only that but the dentist did a cursory cleaning on Robert (which hurt him) and made disparaging comments about him while doing it. 

I filed a complaint and got our money back (Medicaid did not pay for the services contrary to what this company said). I then took Robert to my own dentist.

Robert needed work done but it was not even close to $20,000 worth! The x-rays done showed previous work and the dentist pointed out the improperly done root canals.  Over the course of a few months, Robert underwent a lot of dental work (fillings, crowns and deep cleanings) and I took over brushing his teeth. 

Robert has difficulty keeping his teeth as clean as they should be because of his dexterity issues. After Robert’s summer of hospitalizations and SNFs, we have not gotten back into the routine of me brushing his teeth. 

It showed at the cleaning visit today. 

Keeping Robert’s teeth clean is not just a matter of vanity. Robert is prone to pneumonia and one huge, contributing factor is the bacteria living in his mouth and then traveling to his lungs.  Good oral health helps with good overall health. 

During Epilepsy Awareness Month in 2012, I interviewed Teresa Stallone who also has felt the impact of anti-epilepsy medications on her dental health. Because dental care is rarely covered by Medicare or Medicaid, essential dental work is often placed on the back-burner.  As Teresa said, after developing a life-threatening infection due to severe periodontal disease, “I am experiencing major health consequences as a result, including more breakthrough seizures thanks to medication to ease relentless pain.”

This absolutely should not be tolerated. Dental care is as essential as medical care yet it seems insurance (whether federally or state funded or otherwise) has not caught up to this fact.

People living with epilepsy need to be particularly diligent with their oral hygiene and health. Those caring for someone with epilepsy can help with this task with reminders, visits to the dentist or even helping to brush.  We can also help advocate for better dental coverage and for the awareness of the need for great oral health. 

In the video today, Robert talks about going to the dentist and I stress the importance of good oral health. 

The puppy also demands some camera time!

Epilepsy Awareness Month Day 24: Mood and Medications

Robert is generally very polite, sweet and overall in an excellent mood.  It might be physically difficult to care for him but it is not emotionally difficult when he is cooperative, joking around and full of laughter. 

Robert playing ball with the dogs

When Robert (or any caree for that matter) is cranky, caregiving becomes one hundred times more difficult.  It takes so much extra energy to convince Robert to cooperate when helping him dress when he doesn’t want the help (but needs it) or for him to be sensitive to the bath water and complain about it being too hot or too cold (or both) no matter what I do and to even be yelled at when I am trying to help him walk safely.

Robert gets cranky when he has a reaction to medications (which can happen with many anti-epilepsy medications as well as other medications such as pain meds).  He also got very irritable earlier this year when not only was his medication being changed but he was losing his ability to walk.

I can only imagine how scary and frustrating this is for anyone but for someone with a slight cognitive impairment, it must be especially frightening. 

Anti-epilepsy medications can have many side-effects but, of course, not everyone is affected in the same way or for the same length of time.  When Robert was younger, he was on Tegretol and Phenobarbital (and lots of other medications – he may have tried them all). He has been on Depakote and Klonopin for as long as I can remember.  Robert definitely had depression, anger and impulse control issues as a teen and young adult.  The new medication he was put on earlier this year is at a very low dose because he just couldn’t tolerate any more of it.

The Epilepsy Foundation has a terrific list of anti-epileptic medications with the side-effects associated with it. Unfortunately, many times trying a new medication can be a difficult and time-consuming process that in itself can be frustrating.    

When these nasty side-effects show up, it makes caregiving that much more difficult. The caregiver not only has to deal with a cranky caree but has to figure out if the mood change is due to the medication or something else happening to the caree or a change in the environment. For instance, even a dramatic change such as a new Day Program or a simple change in schedule can affect a sensitive caree – especially those driven by routine.

It is important to bring any attitude and mood changes to the attention of the caree’s physician in case there is something new going on or in case medication can be adjusted. 

We were very fortunate that with a few medication changes and intensive physical therapy, Robert got his “excellent” back.  He still has his irritable moments but I am grateful he is generally in a good mood again.  I realize the solution isn’t always that easy or even, possible.

Although, now that I think about it, the solution for Robert wasn’t that easy – it was a long and difficult summer getting him well.

I am definitely grateful for his return to excellent but know that there will be difficult, cranky times as well.  The most important thing I learned this summer is that we can – and will – get through any difficult period.   

Epilepsy Awareness Month Day 23: Spreadsheets, Spreadsheets and More Spreadsheets

Being organized gives me a sense of relief and peace.  I can breathe a little easier when I know the briefs are in the same cabinet as they were last week and the extra toothpaste is on a shelf that I can direct Richard to when Robert is asking for more.

Sample One Page Info/Distribution Sheet 

I feel confident when handing a seizure log to Robert’s neurologist and we can have a discussion about his increased seizures and what it means. The most recent revelation has been that Robert’s seizures increase in the fall/winter and that this is an actual “thing.” 

It may sound crazy but spreadsheets make me happy.

Excel is my preferred program for creating spreadsheets because it is easy to update and several worksheets can be created within the same document. For instance, I keep a distribution sheet for Robert which is the first one discussed in the video and the one that has all of Robert’s pertinent information on it. This distribution sheet is just one page of a several page Excel file that also includes a page for prior medications, all physicians and specialists, prior physicians and specialists as well as a few other pages of information.

Richard also has a distribution sheet for his mom and for himself. I keep several copies of Robert’s spreadsheet in my purse and at the house in the event we need a copy to give paramedics or emergency room personnel. 

Other spreadsheets I keep for Robert include a vitals log and an “all symptoms” log.  While I know I can’t control whether Robert gets pneumonia and sepsis, I can keep track of his vitals on a daily (or more frequent) basis. Because I take his vitals daily and at generally the same time each day, I know his baseline.  When his blood pressure drops or his pulse is super high then I am extra vigilant (and increase the number of times I take his vitals).  The goal is to catch an illness before it gets out of control.

The real goal is to keep Robert out of the hospital!

I am happy to share sample spreadsheets if these would be helpful in your caregiving situation. I am a big believer in efficiency and there is no reason to recreate something unnecessarily. The samples could very simply be revised to fit your own situation. Please leave a comment if you would like a copy of any of these spreadsheets.

Good luck with keeping organized and enjoy your spreadsheets!  I hope they make you as happy as they do me. (Yep, still sounds crazy.)

Thanks for watching and helping to spread epilepsy awareness!

Epilepsy Awareness Month Day 22: Tips for a Successful Respite

Confession: I am much better about talking about tips for a successful respite than I am about actually taking respite for myself!

A pedicure and a new pair of shoes -
my favorite form of self-care

It has been a while since Richard and I had a weekend for just the two of us so I planned an overnight visit away for Robert.  I contacted the facility we have used in the past and there was some concern about Robert’s past difficult behavior and the fact he now uses a wheelchair. 

Robert’s medications have been changed since his last visit and his mobility isn’t great but he can transfer which was their concern.  I suggested I bring him for the day to start since it had been several months since Robert had visited.  The director agreed that would be a good plan and assured me Robert was very welcome but his staff wouldn’t be able to care for Robert if he couldn’t transfer from a chair.  I assured him that he could do that and can even use a walker for short distances. I also reiterated that Robert's behavior was much improved since his medications were changed. 

So my plans for a weekend respite turned into seven hours.  Plus, not only did I have less of a break, I had to pay out of pocket for the afternoon.  Robert’s regional center will pay for overnight visits but not day visits. 

Planning a weekend respite included running errands, doing chores around the house and partaking in a bit of self-care – maybe a massage or manicure. 

Guess what went out the window with the “weekend" respite?

I told you I am better about advising people to take respite and taking advantage of self-care than I am about actually doing it!

These few tips are as much for me as they are for other caregivers.

Find out if your caree qualifies for paid respite.  For example, Robert qualifies for respite because he is a client of the local Regional Center. Other caregivers receive respite care benefits through the Veteran’s Administration.

Find a good care facility.  Finding a place you have confidence in will provide peace of mind while taking respite.  If possible, keep the same facility for each respite break so the staff is familiar with your caree and the caree is comfortable with the staff.  It makes a huge difference knowing your loved one is in good hands.

Self-care, Self-care, Self-care. Whether it is taking a walk, taking a trip, seeing a movie, reading a book, hanging out at home with the animals or getting pampered, it is important to use respite for some “me time.”  Of course, there are errands and chores that need to be done but I don’t recommend doing only errands (unless you just love to do them).  

Don’t feel guilty about taking respite. (Sure, easy for me to say!)  Taking a break refills my bucket.  It helps me be a patient person. Respite rejuvenates me so I am a better caregiver (at least it does when I don’t squander it on chores). There is no reason to feel guilty about taking a break.  If that still doesn’t convince you, then think of it as doing your caree a favor. They may need a break from you too! 

Please add your own tips in the comment section (I might listen to you more than I listen to myself!).

Oh, and as far as that weekend respite? We have one scheduled in a couple of weeks. 

Never give up!

Epilepsy Awareness Month Day 21: Managing Incontinence

Before we get to today’s topic, I just want to say: OH MY GOODNESS!  We are two-thirds of the way through Epilepsy Awareness Month! My purpose this month has been to post a video each day about the impact epilepsy has had on Robert.  My intent was also to keep the videos to two or three minutes. 

Well, one out of two isn’t bad.  

So many choices - at the pharmacy and online

There is just so much information to share that it is difficult to keep the clips short but I am still trying!  I sincerely appreciate everyone reading and watching and sharing in order to help spread epilepsy awareness and education. 

Managing incontinence has been a struggle for us.  When Robert was younger, he would lose control of his bladder during seizures but that is different than general incontinence. When I first took over Robert’s care, I had no idea he was incontinent.  He started out in a Skilled Nursing Facility since he was on long-term I/V antibiotics and the staff called to ask if Robert was incontinent. 

I answered no, not at all. Why do you ask?

They then told me how he was not able to make it to the bathroom and how he was wetting the bed overnight.  I still didn’t consider him incontinent; I just thought he was having accidents. 

The first step to managing incontinence is to recognize what is happening.  Even after agreeing that Robert is incontinent, I kept him in pull-up style briefs so that he could go to the bathroom on his own and only have the pull-ups in the event of an accident.  I was trying to keep Robert as independent as possible and ended up just never actually catching up to the incontinence. 

Once I realized Robert was really, truly incontinent I would warn all health care workers when Robert was in the hospital or in a SNF.  I explained that he is especially wet overnight and they would nod their heads and tell me they would be able to take care of it.  Then the next morning they would tell me, “Wow! He is definitely incontinent.”

Welcome to my world.

Robert’s incontinence is due to a combination of the signals from his bladder not reaching his brain fast enough and not being able to move quick enough to get to the bathroom in time. This is all part of his increased cognitive impairment and overall decline due to his uncontrolled epilepsy.

This is the impact epilepsy has had on Robert.

Here are few tips to help manage incontinence:

1. Consult with a doctor about the incontinence.  The physician should be aware of it in order to find an underlying cause that needs to be addressed;
2. Figure out what is covered by insurance. Check with a medical supply store or pharmacy to see if incontinent supplies can be covered by Medicare, Medicaid or other insurance plan. Robert gets a monthly allotment of incontinent supplies paid for by Medicare and Medi-Cal. While I am grateful for the assistance, there are never enough supplies. Richard and I spend between $150 to $200 month on extra briefs, bed pads and gloves and could spend more. We realize not everyone can spend extra on supplies. Get as much as possible covered by insurance and then prioritize to figure out what supplies are needed and how much extra money is available to spend on them;
3. When shopping for briefs, size does matter. It is very difficult to put a brief on another person if it is too small. In addition, a too small brief will not be adequately absorbent;
4. Absorbency is critical. All briefs are not equal! The monthly supplies we get include a medium absorbency brief (it is classified as “maximum” absorbency but it is not.)  We order a more absorbent brief online and use those as much as possible but they are expensive so we can’t use them all the time. Instead, we use the less absorbent briefs when we are home during the day and we change Robert several times throughout the day;
5. Invest in cloth bed pads. I didn’t do this until recently and am kicking myself for waiting so long! These are so much more absorbent than the disposable bed pads which is good for both Robert’s skin and the bed;
6. Use a barrier cream. Urine is very harmful on the skin and a barrier cream can keep the skin healthy. 

I would love to know what tips you have for managing incontinence.  Please let me know in the comment section.

Thanks again for helping to spread epilepsy education and awareness! 

Epilepsy Awareness Month Day 20: Memories

One impact epilepsy has had on Robert is on his memory.  I don’t quite understand why he has memory problems (which have definitely increased as time goes by) but I am positive it has to do with his overall decline from epilepsy, his brain surgeries, medications, head trauma and uncontrolled seizures. 

Robert and our childhood dog, Tara

Rereading that sentence makes me realize that I do understand why he has memory problems but I don’t quite understand the mechanics and details of it. Whenever I am unclear on something going on with Robert, I do some research and then talk to his neurologist about it.  Epilepsy Action “the UK’s leading epilepsy organisation” addresses the topic of memory problems in people with epilepsy.

Robert’s neurologist is aware of his memory problems but we haven’t done anything yet to resolve them.  I am not sure there is anything that can be done considering he has to be on all of the medications he is on and the damage to his brain from the traumas and surgeries has been done.

Sometimes after a seizure, Robert is confused and doesn’t know where he is or who we are. Recently, he has had trouble remembering who I am, in particular.  He has even said things like, “You’re not Trish” or “You’re like a sister to me” but these have been after a seizure. 

This morning, I was driving Robert to Day Program and was talking about the weekend when Robert said, “My sister Trish is going to pick me up that day.” 

I did a double-take (it was a quick one since I was driving).  It is possible he had a quick seizure that I didn’t notice but it was very disconcerting.  Eventually he realized I was Trish but it took a few minutes of talking to him for him to realize it.

What is amazing to me is that he remembers things from when we were kids (better than I do) but can’t tell me what he ate for lunch. (Although, he was able to tell me that he did not have Rocky Road ice cream last night for dessert so it was Rocky Road ice cream night tonight.)

Robert started telling a story at dinner out of the blue.  I grabbed the camera part way through and captured him talking about moving out to California, his favorite book which he read as a young boy and also about changing schools when he was in high school. 

He said he had to change schools because he was having too many seizures and the school asked him to leave.  I don’t remember this but don’t doubt it one bit. 

It broke my heart a little.

The clip shows how Robert struggles for words at times and also searches for a memory that he just can’t quite reach. 

The background noise is distracting so I apologize.  I didn’t intend to film him during dinner but didn’t want to pass up the opportunity to capture his memories.