Another Caregiving Hat

Hubby goes in tomorrow for surgery to replace his intrathecal pain pump.

It’s also my birthday (let the singing begin)!

Hubby has been in pain since I met him (although I try not to take it personally).  Mere weeks after hubby’s son was born, Hubby was traveling back to his baby from working out of town when he was rear-ended by a drunk driver (the person who hit him was driving on a suspended license and it was his 4^th DUI). 

Hubby dealt with major injuries and spine pain and was on a lot of pain meds.  He was on quite a bit of pain medication but, over time, went off it and did his best to control the pain with over the counter pain medications because he didn’t like the stronger stuff. 

We met during this over-the-counter drug phase, we married, his pain increased (I tried not to take this personally). 

Hubby saw a pain specialist (and a chiropractor and an acupuncturist and massage therapists and whoever else might have been able to help relieve the pain).  The pain specialist said he had Degenerative Disk Disease caused from the accident.  The doctor tried all kinds of treatments (nerve blocks, stronger medications, physical therapy to name a few). 

Nothing brought him relief.  Hubby was debilitated by the pain and he could no longer work.  He was declared disabled, we took a financial nose-dive, hubby’s view of himself took a major nose-dive, depression enveloped his entire being. 

We had three kids under the age of nine, it was early in our marriage, our finances were a mess and hubby was in severe and chronic pain.

It was ugly.

Hubby tried all kinds of medications to bring him some relief from the relentless pain.  Some medications incapacitated him so completely, he was unable to drive or function as a father or husband (sheesh, he could barely get out of bed).

I should also mention his mood was, well, on the cranky side.   The kids and I all had to not take this personally.

The situation was unbearable for everyone and we had to come up with another solution.

The intrathecal pain pump gave us hope.  The pump promised less pain (never promising to rid Hubby of it completely but promising his life back) and it gave us hope that the strong narcotics hubby was on could be discontinued (or, at least, greatly reduced). 

Fentanyl is delivered from the pump through a catheter into the area in the lower spine causing the pain.  Because the medication is delivered directly into the spinal column, there are fewer side effects from the medication and Hubby is able to actually function without a foggy brain and have reduced pain.  He still takes medication to help control the residual pain but it is nothing like those early days of our marriage (or right after his accident). 

The pump is not a cure-all.  He still has reactions to the oral medications which can cause all sorts of physical and behavioral problems (for instance, he was on Neurontin for quite some time until it turned Hubby into an angry, out of control stranger and I told the doctor he could either live with Hubby himself or change the medication).

Hubby no longer takes Neurontin.

Thankfully, we’ve had a great stretch without behavior issues or depression.  Hubby still has pain but he knows how far he can push himself and when he needs to rest.  I’ve learned to stop telling him what he shouldn’t be doing because it will cause him more pain.  The changes we’ve both made have helped make us happier people and have kept us married for close to 15 years.

The pump runs on batteries so needs to be replaced every few years.  This will be his 3^rd pump (well, 4^th if you count the time the doctor accidentally installed it upside down – oops!).  The device needs to be replaced as soon as possible because it is showing signs of not working and the battery going out (giving Hubby either increased pain or withdrawal symptom s or both).

We found out just before Christmas that a cancellation came up on the doctor’s schedule for tomorrow so surgery has been scheduled.  Hubby feels terrible that he is having surgery on my birthday but I think Hubby having pain relief for a few more years is a pretty terrific present (although – shhh, don’t tell Hubby – it definitely gives me “you owe me” ammunition to use in the future if I ever need it!).

For the surgery, I plan to wear my Mickey Mouse ears from my 50^th birthday celebration in Disneyland last year which, for me, is just the perfect caregiving hat.

Merry Christmas from Robert's Sister!

Confession:  After Robert woke up from his nap this afternoon and ate some candy from his stocking, I asked him to finish his last Christmas card.

No more Christmas cards! Please!

Yes, I know today is Christmas.

Robert was so close to having them done last Sunday.  So close!  He was down to two more to go when we had to leave to make it on time to a Christmas program at church.  Robert would have agreed to pretty much anything since I was actually taking him to church instead of making him watch it on television. 

He agreed to finish them in the car (big mistake and my apologies to cousin Adam if Robert’s handwriting is a bit difficult to read – bumpy roads combined with my driving aren’t very conducive to easy writing in the car).    

We got to the church before he could finish the second one so it stayed in my purse until Robert came over again this weekend.   Even I didn’t think it would be okay for him to finish the last one during the church program (plus, the lights were out most of the time . . .).

So, yes, on Christmas, Robert finished his last card.  I actually may have him do a few more just to get a head start on next year!   (Okay, I kid). 

I am grateful the cards are finished but I’m also grateful for a Christmas season filled with love, happiness, family and friends.  There has been so much laughter with our daughter who helped with the Christmas lights and assisted with shopping.  I am grateful for our other daughter for being a wiz in the kitchen and supplying us with delicious treats (and giving me a reason to join a gym in 2012!).  Both are busy with work and school and their own friends but find the time to be with family.  Our son seems to have turned a new leaf since he realizes he’ll be leaving for boot camp in 5 weeks and is (gasp) actually fun to be around (and seems to  be more on board with making good decisions).  Hubby and I have been enjoying working as a team in our usual Christmas roles (I shop; he wraps – we do make a great team!) and Robert hasn’t been in the hospital for quite some time due to illness or falls (knock on wood).   

I am grateful Hubby’s family, Robert and all the kids joined us today for a Christmas morning filled with laughter and way too many breakfast treats.  Other Brother and his family are visiting tomorrow so the Christmas fun and treats will continue for another day.  

(I definitely need to join a gym or invest in more sweat pants.)

I hope your Christmas was as delightful as ours.  Just one word of advice: take it from me, you may want to get started on your Christmas cards tomorrow . . .

Is it Christmas Yet?!

It better not be – Robert isn't done with his Christmas cards yet!  (Um, mine are “in the mail.”) 

One thing we do have finished: our decorations (which is no small feat).  Our tree, despite a rockystart, looks very festive and is just waiting for presents to be wrapped and put around it (still on our list).  Indoor decorations can be checked off the list (as soon as I unpack those kitchen boxes).  Every inch of the house is covered with garland or snowmen or candles or countdown calendars (holiday bonus – the decorations do a fantastic job of covering up the dust).

The finishing touches were put on the outside decorations yesterday (I love crossing things off my list!).  Aside from needing a permit to display thousands of lights (I kid – a little garage conversion humor), the lights went up fairly smoothly aside from many of them not working this year and having to make numerous runs to the local Holiday Decorations/Cat Food store (otherwise known as Target).

Yes, we made another trip to Target yesterday before we could finish. . .

But they are finished!!  (Unless I find something else at Target too cute to pass up).  Hmm, I may have a problem.  Is there Christmas Decorating Rehab?

Well, before I am “cured” of decorating too much, enjoy the video of our outside décor. (If I knew what I was doing in taking videos, I’d add a bit of holiday music and maybe Photoshop some snow into the picture but since I don’t you will have to imagine “Frosty the Snowman” playing in the background and a blanket of snow on our green, Northern California, grass.)

I’d love to hear what your holiday passion is – is it decorating?  Baking?  Wrapping?  Will I be seeing you in Christmas Decorating Rehab in January?  No matter your holiday passion, enjoy the last week (or two) of the holiday season! 

“The Butter is Having a Meltdown”

That’s the best quote I’ve heard in a long time.  It comes from June’s 9 year old autistic son who was watching the butter melt in a pot as his mom did some holiday baking. 

I had my own meltdown this weekend and I’m not proud of it.  I got pretty cranky with Robert which always tells me it’s time to step back and take a break (although, I wish I could figure this out before I start snipping at him!). 

There are all kinds of reasons (I’m not making excuses) for the meltdown:  work is super busy this time of year, there are the extra tasks associated with the holidays (don’t get me wrong – love the holidays but adding holiday cards, parties, decorating, shopping and eating mounds of chocolate to an already busy schedule can be a bit stressful).  Then there’s all those lemon bars my body is trying to decide what to do with (is this junk food or does it count as one of the five fruits/veggies a day?). 

It was a short visit with Robert but packed full of activities.  I picked him up mid-morning on Saturday and had him change into his pajamas for a Christmas PJ party (my giant cow slippers were the hit of the party!).  I could have asked New Home to already have his pajamas on but there’s always the possibility Robert would put on pajamas that aren’t, um, clean.  Alright, they might smell.  He has a tendency to not notice if he’s wearing clothes that suffered through a protective brief leak and then dried.  I can’t have Robert wearing smelly clothes.

People already are wary of Robert because of the walker and the helmet and the slow speech and the seizures.  The last thing I want to add to his resume is “I smell like pee.”

I arrived to pick him up, had him change into some good smelling pajamas and we went to the party.  We were late but not late enough to miss out on any of the activities.  Robert won a prize (a set of Spongebob mugs with packages of hot chocolate mix) and grinned from ear to ear.

It was a full day and we all took it pretty easy when we got home that afternoon. 

So where’s the meltdown? 

Later in the evening when Robert was getting ready for bed, he had some bathroom issues.  Let’s just say he had trouble cleaning up (I think I’ve mentioned before that Robert likes to use one square piece of toilet paper to clean up.  No amount of me telling him I can afford to buy as much toilet paper as necessary seems to convince him to use more.)  I’ve even bought him wet wipes to clean up and told him he can use as many as he needs but he is determined to save some trees. 

As any caregiver will tell you, it is sometimes necessary to step in and help.  It was at this time I realized I didn’t have any gloves so had to resort to supervising the clean-up.  It was not going well because Robert was not listening to my instructions which were pretty clear:  USE MORE WIPES!  During this chaos, Robert’s pens that he had removed from his shirt pocket and set on the bathroom counter fell into the wastebasket along with all the used wipes. 

I wasn’t about to go fishing for them.   

He continued to get cleaned up (and not listen) and I could feel the crankiness well up in me and I was snippy with him while he finished up. 

(That’s not the meltdown).

We Have a Winner!

This was the first year I participated in the caregiving.com Holiday Progressive Blog Party and I am already counting the days to the one next year!  Hubby baked sugar cookies and habanero cheesecake and (gasp) Lemon Bars for the occasion (well, he actually baked all that for a family Christmas Party we attended yesterday but I’ve enjoyed a few lemon bars while reading blogs). 

Okay, okay, fine.  I admit it.  More than a few. . .

During the Blog Party, I was introduced to a few new caregiving sites (Care About You; Caregiving Library; A Day in the Life; Intentional Caregiver; Jersey Jenny and SandwichINK) and continue to support and admire the work done by Denise Brown at Caregiving.com.

Along with reading great blogs, we had prizes this week!  From the caregiving.com site, NJ won an autographed copy of my book, Forever a Caregiver (I may add in a few extra goodies to her gift bag just because it’s the season to do that!). 

Also, as promised, I picked a winner from the commenters on my site this week and the winner is (imagine a drumroll, please): June Sockol.  June also writes (excellently) at Life of a JuneBug about, as she says, her “life as a mom-preneur to an autistic son.”

June also wins an autographed copy of Forever a Caregiver.  June just may find a few extra treats in her gift bag as well, although, I’m going to have to keep those Lemon Bars for myself!

Congratulations to the winners!! 

If you’re looking for a Christmas gift to give to a caregiver (or to someone who just likes to read about crazy families), Forever a Caregiver continues to be on sale until December 14.  Enter the code BUYMYBOOK305 at checkout. 

Now, off to sneak another Lemon Bar or two . . .

The Story of Robert

It occurred to me after telling the story of Linda and her son, Jason,  and of Cindy and her son Robert and their assistance dog, Boomer, I could tell more of the story of my own Robert. 

Most readers know Robert is my little brother who, at 46 years old, has lived with uncontrolled seizures his entire life.  He is physically and cognitively disabled and seems to lose a little bit more of something all the time. 

Everyone also knows he’s a card shark and delights in beating me at his favorite card game, Kings Corners.  If that ever changes, I know we’ve got serious problems.

It’s been extremely difficult for me to reconcile the Robert that I know now with the Robert I remember as a child.

Robert started having seizures when he was five or six.  He recalls the experience as either being able to watch cartoons in his head or seeing the colors “red, blue and green.”  Either I have a terrible memory or I’m an inattentive big sister but what is so remarkable about Robert’s childhood is that he was so normal.  Sure, he struggled in school.  He was even held back in either 4^th or 5^th grade because of absences.  He had seizures but he ran around like any other young boy.  He got into mischief and was “a handful” as we parents like to say about high energy kids.   Robert was diagnosed as hyperactive and was put on Ritalin for a while.  I don’t really remember that helping.  Having a brother with epilepsy didn’t seem all that unusual to me. 

He was kind of a pest but isn’t that the job of the little brother?

Robert tried a variety of anti-seizure medications.  Tegretol, Phenobarbitol, Dilantin – loads more.  The side effects were brutal when he was a teenager.  Rob would spend hours in the darkened closet of his room, refusing to come out.  Mom had a tough time handling him and he lived with our dad for a while once our parents divorced.  Rob was aggressive and surly and depressed.  He threw a punch at our mother at one point and was aggressive toward me as well.   I thought I knew everything about this period until we were at his recent neuropsychology appointment.

Rob told the doctor he tried to kill himself when he was ten years old.

A Caregiving Holiday Blog Party!

For whatever reason this year, many of our Christmas decorations decided this was the year to stop working.  Several strands of lights went through the “testing” phase of putting up decorations, only to stay dark (and, yes, we checked them on a different outlet in case our outlet was the problem).  Our lighted candy canes that usually brightly line our walkway still line the walkway but you’ll need to use the light from the lights in the nearby tree and the snowflakes hanging from the gutters to illuminate your way to our door.  We also had to say goodbye to the usual lighted holly we hang above our garage. 

Goodness, it was as if they all looked at each other and said, “We’ve worked long enough.  Let the elves make a few more candy canes and string lights and holly, we’ve paid our dues.”

So, off they went to Occupy the Garbage Bin.  

Inside, the situation was similar.  Lights didn’t work and a couple of ornaments broke (both of them Nebraska Cornhusker ornaments, no doubt shattering themselves to oblivion due to a disappointing football season).  At least we had about a thousand other ornaments and a beautiful, albeit, slightly banged up tree.

Looking good after a rocky start!

We don’t usually intentionally get a banged up tree but this year was special.  This was the first year our tree flew off the roof of our car during the trip home.

Yep.  A 10’ foot tree, freshly cut from a nearby Christmas Tree Farm flew off of our SUV on a two lane road and landed in the next lane over but miraculously avoided hitting any other cars.    

Bonus: it didn’t even get run over.

My husband would have loved to keep that part of our Christmas tree experience just between us and our son who was riding in the backseat (and who looked about as shocked as an 18 year old boy trying to maintain some semblance of “cool” can look), but with technology today, I had already texted our daughters and was in the middle of posting the event on Facebook when his request for privacy came through. 

Gotta make that request that a little quicker, honey.  My typing fingers are pretty darn speedy.  (Plus, who really could keep that experience to themselves?)

Now that the decorations are finished and the tree is in our home instead of the highway, it’s party time.  Since this is a blog, this is a blog party. 

This week, I’m participating in the Caregiving.com HolidayProgressive Blog Party!   It’s a great opportunity to read the blogs of other caregivers as well as those blogs of a few people running businesses which are designed to help caregivers. 

I never tire of mentioning what a fantastic resource Caregiving.com is for caregivers.  It offers a community – no, a family – of support, resources, inspiration and caregiving tips.  If you are a caregiver with a blog or have a business geared toward caregiving, you can join the party too!  Visit caregiving.com for the details to join and how to win great prizes.

Speaking of prizes, at the end of this week I will give away one autographed copy of my book, Forever a Caregiver, to a random visitor/commenter.  This book is for anyone who is a caregiver or who has a family.  J

Now, imagine sitting around our tree (which doesn’t look too bad after having spent some time on the highway), grab some hot chocolate (with a candy cane in it, of course), a couple of cookies and enjoy the party. 

Introducing Another Robert

For my final blog about Epilepsy Awareness Month last week I was going to list the last few facts and briefly talk about the people I met who either care for someone with epilepsy or who have epilepsy themselves.

What I realized is the stories of the people I met cannot be summed up in one or two sentences.  These are people who, like Robert, have lived with epilepsy or cared for someone with epilepsy a good part of their lives.

So my final blog has turned into a never ending "final" blog consisting of several posts.  I posted the final few facts and I introduced Linda who cares for her son who has lived with epilepsy most of his 40 years.  Both Jason and Linda “choose happy” in order to manage their situation. 

On Day 18 of Epilepsy Awareness Month I presented the fact about Seizure Response Dogs and learned of another Robert with epilepsy that day! 

Cindy cares for her son, Robert, who was paired with a Seizure Response Dog (Boomer) from Paws with A Cause in 2009.  

Cindy’s story touches on one of the astounding aspects of epilepsy which, according to the CDC, is that “epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.”   

If there was one drum I continuously beat during the month of November it was that more funding is needed for epilepsy research.  Now I’m no math wiz (as many of you know) but it seems to be a very simple formula.  Increased funding for research = better seizure control or (gasp!) a cure = less medical costs & fewer lost earnings. 

In Cindy’s case, not only is her son not able to work but Cindy left her career seven years ago to help care for Robert.  Cindy shares her story:

“My son Robert is 24 years old.  Robert's first known seizure occurred when he was 2 ½ years old.  The doctors told us it was a febrile seizure since he had a sudden spike in body temperature at the onset of the seizure.  They assured us we didn't need to worry, that it wouldn't happen again.  It did.  We were reassured once again, and then he had another.   After the third seizure we were reassured that he would grow out of this common childhood condition and wouldn't develop epilepsy.  Soon after, he had his first non-febrile seizure and then another.  He was then diagnosed with epilepsy – all before his fourth birthday. 

Meet the Faces of Epilepsy

When I was growing up, I knew one person with epilepsy: Robert.  My knowledge of epilepsy was limited.  I knew he had seizures, I knew not to panic when they happened (early training for my overall “let’s not panic” motto) and our parents took him to a lot of doctor appointments.  They were on such a quest for a cure they once even took him to see a neurologist in Switzerland (from our home in Nebraska).  They wanted the best neurologist in the world to see him and made it happen.  Unfortunately, they returned defeated since the neurologist didn’t recommend surgery (or any other options) at that time.

Robert was different because he had seizures but he had friends. Not all the kids were very understanding but he did his best to educate them even then.   By the time high school came for him, he had friends but many people shied away from him too (having tonic clonic seizures with a loss of urinary control doesn’t do much to put you on the popular track in school).  Robert once told me that he realized people were saying mean and incorrect things about him after one of these seizures so he asked his teacher to let him give a talk to the other students to educate them about the disorder.  The teacher allowed him to talk to the class and Robert spread epilepsy awareness in his own way.  I am grateful to that teacher because, even years later when telling me the story, Robert feels great pride that he was able to educate the other kids about epilepsy.  

During Epilepsy Awareness Month in November, I was fortunate to meet many other extraordinary people either with epilepsy or caring for someone with epilepsy.  Over the next few days, I want you to meet them too.  

One of the first people I met when I started the month of epilepsy awareness was Linda.  Linda is a mom, grandmother and wife living in North Dakota.  She’s probably living with a bit of snow right now!  She’s also a caregiver to her son, Jason, who (if I didn’t know better) would think was Robert’s twin.  Their stories are very similar. Linda shares their story:

“Jason had his first seizure in 1971. Up until then he was a normal, happy, healthy 2 ½ year old. From that day forward our whole world turned upside down for him and our family. Epilepsy not only impacts the person who has it, but the whole family unit has issues in many different areas of their lives as well. We live in a small rural community in SW corner of North Dakota, so, we had to travel many miles to find the medical help we needed for Jason. There was no Internet or great support systems back then. We made numerous trips to Mayo Clinic, U of MN, and other clinics in ND and SD. We tried the Kerogenic Diet, surgery in 1983, VNS implant in 1990 and of course every med and combo of meds on the list. Jason just seemed resistant to all meds. Usual side effect was horrible behavior and since he lived at home, that was just not acceptable. At present he is on Carbatrol and Zonisimide, which seem to be working well together for behavior.

“After 40 years, he still averages about 30 seizures a month. Every year he goes downhill physically and mentally. Jason lives at home with me and his Dad.  I have always been a stay at home Mom. We are basically his shadows. He attends a sheltered workshop 5 days a week.  Jason has two younger brothers, who he calls his "big brothers," and he is an Uncle to 5 kids. He loves home, puzzles, books, movies, especially the Star War Movies and playing board games. He always tells people "you can choose to be happy or sad. I choose happy.

“My husband, Gary, retired early to help care for Jason and we basically just live a simple quiet life and enjoy home and family. We were told in June, by the doctors at Epilepsy Group in St. Paul, MN, that we were pretty much out of options.  Unless research can find some miracle, I doubt Jason will ever be seizure free. Sadly, I've resigned myself that this is probably the best it will be for Jason for now. After 40 years, one just gets worn down mentally, physically and financially.”

Even with these frustrations, they "choose happy."

I am grateful to have connected with Linda and look forward to sharing with her any new information about Robert and learning more about Jason.  You can read more about Jason’s story at Crowdrise which is a fundraising site.  Linda has stepped out of her comfort zone to raise money for CURE to help, as she says, “keep the lights in an epilepsy research lab for a day or two.” 

Tomorrow, I will introduce you to another Robert and his assistance dog Boomer!