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

The impact of epilepsy on Robert is that he has declined to the point of needing assistance with his daily living tasks.  He is incontinent but isn’t aware (or concerned) if his pants get wet.  He’s told me before, “they’ll be dry by morning.” 

Um, he needs a little . . . guidance when it comes to staying clean and taking care of himself.

Richard and I make a pretty good team

Richard and I are that “guidance.”  We make sure he gets his medication on time, wears clean clothes, eats balanced meals (with a few treats thrown in). 

We are responsible for Robert and whether Richard’s back pain flares up or I have a busy week at work, the responsibilities stay the same. When Richard and I are not at the top of our game, we have to make adjustments to our regular schedule.

As it happens, this has been a horrendous week at work and I now have a cold.  It isn’t anything serious but it has me down enough to wish I could come home from work and snuggle under the covers with the dogs.  I would love to not make any decisions or have any responsibilities.

Instead, we have to make adjustments. Obviously, Robert still needs care but there are short-cuts we can take without jeopardizing his health or safety or happiness.

It’s okay if we get Robert ready for bed a little earlier than normal.  After all, he is perfectly happy watching his shows and working on his word search.  I know he is safe in his bed and can monitor his seizures by watching him on the camera we set up. 

Our Friday night dinner out might need to be turned into Friday night take-out. 

If there is a more long-term issue of Richard or I being sick, then we have a back-up plan. We have a wonderful facility that we use for respite care and we would be able to take Robert there if an emergency arose.  (Richard’s hospitalization last year comes to mind – if he had to stay longer than a few days I would have used the facility for a short-term stay for Robert.) 

Every now and then the caregiver will get sick and adjustments will need to be made.  It is always good to prepare for these situations and have a back-up plan in place before an actual emergency. 

As far as caring for the mental health of the caregiver, I highly recommend the caregiving support website www.CareGiving.com.  It is a terrific community of other caregivers and since it is an online community it is accessible at all times. 

Even when you just want to snuggle under the covers!

Epilepsy Awareness Month Day 13: Enjoying the Simple Things

I don’t know if Robert finds pleasure in simple things because of the cognitive impairment that has increased over the years or if he just figured out the key to happiness before the rest of us.

Deeeelicious! 

Robert has had many challenges to overcome in his life due to his uncontrolled seizures and (for the most part) maintains a very positive attitude about his life. 

Many years ago at a family reunion, Robert recounted his many injuries:

Cracked his head open dozens of times (he actually has a permanent bald spot where he usually hits his head and gets his stitches);

Broke his jaw at seventeen;

Broken collarbone;

Almost drowned and because of that was in a coma for a couple of days;

Numerous concussions;

A third degree burn on his arm from having a seizure and landing on a lamp (that was on);

That is a lot of injuries.

According to the Epilepsy Foundation, “Up to 50,000 Americans die each year from seizures and related causes” and “the mortality rate among people with Epilepsy is two to three times higher than the general population.” Further, “Risk of sudden death among those with Epilepsy is twenty-four times greater.”

Injuries are a huge part of that higher mortality rate and, frankly, Robert has been incredibly lucky that he hasn’t died from any of his accidents.  Robert has not let his challenges keep him from enjoying life no matter what his life expectancy might be, though.  In fact, life expectancy is not something Robert has ever worried about.  Our mom worried about it but Robert never has seemed concerned.

Instead, Robert lives his life and loves the simple things:

Watching Jeopardy, Family Feud and Wheel of Fortune;

Solving word search puzzles;

Watching church on Sunday (always while wearing a white shirt);

Chocolate shakes;

Rocky Road ice cream;

The clip today is just of Robert enjoying his ice cream. He likes to count each bite, savor the flavor and declare it “deeeelicious.” You don’t have to watch since there’s really nothing exciting going on but it shows Robert in the moment of enjoying something he truly loves.

Be warned if you do watch it because you will definitely want some ice cream afterwards! J

Epilepsy Awareness Month Day 12: Epilepsy and Working

Yesterday Robert talked about not being able to drive because of his uncontrolled epilepsy (well, except for that one time our dad let him drive but that’ll be our little secret).

Once Robert finished his bedtime routine and got settled into bed (and agreed to set aside the word search puzzle and Jeopardy for a couple of minutes), we finished our conversation.

I hope you’re enjoying watching the clips as much as I am enjoying making them. My camera work isn’t the best (and certainly doesn’t seem to be improving – apparently, “Spielberg” isn’t my middle name) but I keep learning more and more about Robert and the impact epilepsy has on his life.

What I learned in this clip is that Robert wanted to work but was never able to because of his uncontrolled seizures.  It is such a natural human need to want to be productive and a contributing member of society.

When Robert lived at the care facility, he was given certain chores to do and usually did them enthusiastically. He was in charge of opening the blinds in the common rooms and taking his dishes into the kitchen after dinner.  Watching him do these chores always made me a little nervous since the plates were stacked a little too precariously on the seat of his walker and the blinds were never quite an easy reach.

Definitely an accident waiting to happen but he enjoyed doing these chores. 

While Robert’s seizures were too frequent to make employment a viable option, many others with epilepsy are able to work and have successful careers.

It is important to know that employers cannot discriminate against a person with epilepsy as it is a protected disorder under the American Disabilities Act. The ADA prohibits discrimination against employees with epilepsy (or other qualifying disabilities).  The U.S. Equal Employment Opportunity Commission answers commonly asked questions about epilepsy in the workplace on their website. 

In this clip, Robert talks about the things he misses because he has epilepsy. It is probably one of my favorite videos in this series (if I ignore the shoddy camera-work!). J

Epilepsy Awareness Month Day 11: Driving and Epilepsy

Many people with epilepsy achieve good seizure control with medicine, surgery, diet, a medical device (such as the VNS) or some combination of any of these.  However, a third of people with epilepsy never get their seizures under control. 

'69 Chevy Chevelle: Other Brother and I learned to
drive in this kind of car which belonged to our mom.
Not your typical mom car! 

What is the impact of epilepsy on this group of people with epilepsy?

It is huge. Uncontrolled seizures affect all aspects of life: mobility, cognition, driving, employment, relationships, mental and physical health – the list is endless.

Robert has been talking this month about the impact intractable seizures (also called “refractory” or “uncontrolled”) has on his life and he is just one of many.

In the video today, Robert talks about not being able to drive. Robert has never been able to get his driver’s license since his seizures have never been controlled.  

That’s not to say he has never driven. (Apparently, our dad thought it was important to let Robert have a driving experience so allowed Robert behind the wheel at some point. Not the safest thing to do but not the most surprising thing our dad has ever done either.)

Laws about driving when a person has epilepsy vary from state to state but generally include a specific period of time the individual is seizure free and sometimes a certification from a doctor is required as well. The Epilepsy Foundation has a terrific interactive database of driving rules in each state which makes it very easy to figure out if getting a driver’s license is a possibility.

We ended the video today rather abruptly but picked up again after dinner and once Robert was in bed. Tomorrow, I will run part two in which we talk a little more about driving and also about epilepsy and employment.