Tuesday, March 24, 2015

March Interview with Denise Brown

In the March interview with Denise Brown of CareGiving.com, we talked about the stress of a working caregiver. I realized during our conversation there is a baseline of normal for my stress level and then there is a line that when I cross it, know I am under too much stress.

I feel it from my toes to the top of my head. I am tense and focused on plowing through the situation. My lips are pursed, my eyes are squinty and I forget to eat, drink and go to the bathroom.

Grumpy Cat - Always full of wisdom
Stress builds up and is manageable until it isn’t.  It can be one little thing that makes me cross that line (an unexpected work project; a deadline that has been moved up; a cluster of seizures Robert experiences or the question “why don’t you handle ‘insert project here’ this way?”).


There is a line and I know when I have crossed it.

I get cranky (see above) and need to indulge in self-care.  What if there isn’t time for that?  Then I postpone the self-care for a short-period of time (a day, a week) but I know that it will happen. For me, self-care is usually a manicure or pedicure (or if I am really indulgent, both). If my schedule is so packed that I cannot indulge in that block of time, I know that I have to do something to relax – maybe just watch a television show or have unproductive computer time (you know, watching cute cat or dog videos).

Where is your line?  What do you do when you have crossed from the manageable stress level to the “I CAN’T TAKE IT ANYMORE!” level?

I invite you to share what pushes you over that line in the comment section below.  

Also, please join us the second Saturday of each month to listen live so you can participate and ask questions or comment in the chatroom during the show.  I look forward to the show with Denise and as we also discussed this month, the shows are a great collection of the ups and downs of caregiving – each month is a new episode.

Denise asked what I hope to talk about in April. I told her I hope to have the house sold and have us well on the way to moving into a one-story house. That is an episode I would like to end soon!

I think I might actually yell, “That’s a wrap!” when we sign on a new house – someone get me a megaphone!  

Thank you for listening (and reading). 

The March show can be heard here.

Saturday, March 21, 2015

When Seizures Come by the Dozens

The unexpected nature of seizures is scary enough.  Will one strike while Robert is eating? When he is standing? When he is transferring from his walker to the wheelchair?

Robert’s seizures are the Complex Partial type.  He loses awareness, his head turns to the right and generally, there is labored breathing. 

They last from 2 seconds to 5 minutes.  We can usually tell when he is going to have a longer one because his head turns more to the right than with the shorter ones.  It’s as if his head is turned as far to the right as possible – sometimes the seizure starts with his head sort of to the right and then after a few seconds, his head turns all the way right. 

When that happens, I know we’re in for a few minutes of labored breathing, lips pursed together and, sometimes, a fall (unless we prevent it).  His whole body tries to turn right causing him to move out of his chair.  Richard or I gently hold onto him or block him so he won’t fall off the toilet or chair or wherever he may be. 

Those are awful.  Robert is confused afterwards although it is interesting to hear him answer the questions we ask him.  He has insisted I am not his sister, has thought Richard was his step-dad or brother and many times cannot tell us where he is living.

It must be very scary for Robert to be so confused. Richard and I gently remind him where he is and who we are and eventually the confusion subsides.

For months now, Robert has been having clusters of seizures within a short period of time.  These usually come by the dozens and have proven to be quite challenging to stop.

The first cluster of dozens was in November just a few days before we left for Disneyland.  The Nurse Practitioner (who I LOVE) thought the cluster was caused by all the excitement of the upcoming trip.  That made sense.

Until two weeks later when another cluster struck.

Then one in December. One in February and two in March (so far).   

The NP increased the dose of the emergency med when the clusters first started as another theory was Robert was getting used to the drug (Ativan) and it was losing its effectiveness. She told me the max amount to give him per day was 4 mg.

Twice I have had to give him more than the max.

Twice I worried that I was going to do more harm than good. 

Yes, twice I have worried that I was going to kill him by giving him too much of the medication.

If I don’t give him the emergency med the seizures keep coming and I am afraid he will end up in Status Epilepticus

I have taken him to the hospital during a cluster – the first time it happened.  Going to the ER is always a risk, however, because declines happen at hospitals.  It is best if I can manage the seizures at home. 

So Richard and I do our best.  We keep a log, time the seizures, give him the Ativan and keep the activity and noise to a minimum and let him rest.

(We also take him to the restroom a lot because the Ativan seems to activate his bladder like you wouldn’t believe!)

The logs have helped.  I keep a seizure log, a behavior log and a vitals log. They help me try to find the seizure triggers and they help give me a sense of control over something I absolutely have none. 

I realize the logs are an illusion of control but I use them and they are comforting.

They are actually very helpful, even if they don’t really give me the control I think they do.  However, I have reviewed all the logs and have a theory: I think the trigger has to do with him being overly-tired.  The clusters occur on the weekends (except one which happened on a Thursday).  I think he is exhausted from waking up early through the week and going to Day Program.

The other correlation is they tend to occur when he is congested.  He has had a really bad cough lately but his vitals are fine (no temp, pulse rate is normal and the oxygen level is normal as well). Maybe it’s a combination of the congestion and being overly tired. 

In order to make sure he is well-rested, we let Robert sleep in on the weekends, we have changed his bedtime to an hour earlier and the weekday morning wake-up to an hour later. We have declined morning transportation to Day Program just so Robert isn’t rushed in the morning and we can let him sleep in later than we would be able to if he was supposed to catch the van to Program.  

It still may not be enough rest for him.

Robert’s seizures are changing and getting scarier than they used to be but they will not deter me.  We will continue to look for the right medication, the right amount of sleep, the right triggers so we can more effectively manage the seizures. 

We have to – there is no other option.

Sunday, March 15, 2015

Book Review: I Feel So Unnecessary, Adventures in Caregiving From a Granddaughter’s Perspective by Lisa DuVal

I have been looking forward to reading I Feel So Unnecessary, Adventures in Caregiving From a Granddaughter’s Perspective for quite some time.  Lisa DuVal is a fellow caregiver and blogger and has a sense of humor that can always bring a smile to my face.
48 Pages
A Caregiver's Story

Lisa offered me a complimentary copy of her book in exchange for my honest review and I jumped at the chance.

No topic is off-limits for Lisa so I was very excited to hear she had written a book about her experiences caring for her grandmother. I quickly learned where Lisa got her bold and unabashed demeanor: Grandmother Cille was outspoken and opinionated – and apparently quite a caregiver herself.

From frequently peppering conversations with the word “sh**” without hesitation to telling a nurse to “take him” referring to her husband, Cille is a fireball of a woman.  Lisa shares vignettes of her caregiving days and does so in a way that made me adore both Cille and Lisa.

This quick read of not only caregiving days but moments is also a testament to Lisa’s devotion to family and her positive attitude.  Many of the situations Lisa dealt with when caring for her grandmother could have been much more stressful if Lisa hadn’t used her sense of humor to lighten the mood.  So much of caregiving is about attitude and Lisa keeps a positive attitude and frequently sees the humor in her caregiving experience.

One of my favorite parts of I Feel So Unnecessary, Adventures in Caregiving From a Granddaughter’s Perspective is Lisa’s handling of a couple of situations with a home health aide and the agency.  Lisa perfectly exemplifies a tough and persistent caregiving advocate in order to be sure her grandmother gets the quality of care that she deserves.

You can purchase I Feel So Unnecessary, Adventures in Caregiving From a Granddaughter's Perspective on Amazon or through Lisa’s website, I Feel So Unnecessary

Thank you, Lisa, for sharing your caregiving experience and Cille with us.

Tuesday, February 10, 2015

Guest Post: Laura Caldicott, A Family's Story

The first annual International Epilepsy Awareness Day was yesterday but here at RobertsSister.com we are going to continue spreading awareness and education about epilepsy whether it is an official day, week or month. 

Mainly because we love purple!  (I kid – but I do love purple.)

I am pleased to bring you the story of Josh. Josh’s story, as told by his mom Laura Caldicott, is eerily similar to Robert’s.  Josh is only 11 but the beginning of his epilepsy journey is very similar to what I remember about Robert’s. Laura also includes additional information she wrote about epilepsy via a link in her story.

Thank you, Laura for sharing your family’s story with us! If anyone else is interested in sharing your story about epilepsy, please leave a comment below.

Our Son: The Epileptic
Laura Caldicott

Being a parent is the toughest job there is, but when your child has a lifelong medical condition it can get a whole lot harder. I have found this out for myself since my son Josh, now 11, was diagnosed with epilepsy four years ago. Ever since I can remember, I felt that something wasn't quite right with Josh but the symptoms he displayed never prompted me to consider epilepsy – a neurological disorder where intense electrical activity in the brain disrupts the body’s sensory functions. Dealing with the diagnosis has been tough for our family. This is our story.

Subtle signs
As a baby I noticed Josh would sometimes flutter his eyelids and make involuntary jerking actions with his legs. As he grew older these symptoms would occur more often – particularly when he was overtired – and sometimes were accompanied by brief periods of 'zoning out'. Still, I put it down to his age and wasn't worried. But soon after starting school his teachers picked up on it and advised me to seek advice from a pediatrician, initially believing there could be a possibility of cognitive issues or learning difficulties.

I booked an appointment immediately and talked through Josh's symptoms. At this stage epilepsy wasn't mentioned but the doctor did ask me to take a short video of Josh's next 'zone out'. So I did and we went back. It was then the doctor referred us to a neurologist where EEG and blood tests were carried out. When the diagnosis of epilepsy came back I was stunned. Like many other people I associated the condition with tonic-clonic seizures – collapsing, shaking, convulsing. Josh just lost concentration for a little while, how could that be epilepsy? The doctor explained that the condition varies in terms of severity and that as Josh's brain matures he could indeed suffer some of these 'traditional' seizures. He asked if Josh had ever suffered a severe head injury or a brain infection such as meningitis. He hadn't but I had gone through a traumatic labor and he may have suffered a slight brain injury then. I guess we'll never know.

Moving forward
Back home we had to start adjusting to life with epilepsy. At seven years old, Josh was a little young to fully understand, but he knew he now had to take medication regularly and his TV/computer time was cut as we soon recognized this (as well as tiredness) to be a major trigger in inducing his seizures. One of the toughest things was that Josh was a keen swimmer and dreamed of learning to scuba dive. For a while I was terrified to let him in the water for fear of him suffering a full scale seizure and the prospect of scuba diving had to be ruled out altogether as a seizure underwater could be fatal. This upset Josh more than anything and the phrases 'it's not fair' and 'why me' were used a lot in the first year following diagnosis.

Josh is now 11 and is very responsible regarding his condition. He is accepting of the things he can't do and takes his medicine ritually. Despite this, however, the doctors were right and he has suffered two tonic-clonic seizures since diagnosis. It is a terrible thing for any parent to witness as you are completely powerless to stop it but I'm just glad that we had the epilepsy diagnosis before they happened otherwise it would have been too frightening to imagine. Also, we were prepared. We knew what to do which involved making him as comfortable as possible without moving him, supporting his head and removing anything dangerous from nearby that he could hurt himself on. Then we just have to wait for it to pass. It's something I pray I won't have to see again but sadly I fear that I will.

To any parent of a child with epilepsy, I know how tough it is and I urge you to stick with the medication, do your research and stay positive both for yourself and your child. With the right treatment epilepsy is manageable, if not curable so keep that in mind and work towards maintaining a happy, healthy lifestyle for your family.