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Tag Archives: epilepsy

10 Tips for Family Caregivers: Caring for Those with Epilepsy

This is Robert

November is both Epilepsy Awareness Month and National Caregivers Month and since I like to multi-task, I thought this would be a good day to bring the two “awareness” months together. This is going to sound crazy but I am stumped. Call it writer’s block or a brain freeze or the effects of it getting dark at 5:00 p.m. I am staring at a computer and have no idea what tips to give someone who ... Read More »

Robert’s Sister Goes to the Movies: World War Z

Image credit: Amazon

On a recent weekend evening, Richard and I found ourselves caught up on the recordings on our DVR; the new season of our other favorite shows hadn’t yet started and no one was in the hospital. Plus, we needed a distraction since Breaking Bad was down to the last episode or two and it wasn’t yet Sunday night. (Boy, I miss that show!) We decided to watch a movie and settled on World War Z. ... Read More »

When Doctors Don’t Agree

prescription sign

It is such a dilemma for me when doctors suggest new medications for Robert. My first inclination, after careful thought and consideration, is: ABSOLUTELY NO WAY! See how reasonable I am? It is true that Robert has tried a variety of medications throughout his life.  Some have helped and some have caused horrific side effects (from behavior problems and depression when he was a teenager to causing balance problems and falls). Before I took over ... Read More »

Robert’s Turn in the Hospital

Robert feeling better in the ICU

October cannot come soon enough. Richard (@kreisler), was in the hospital for four days after Labor Day (most spent in the ICU), thanks to an inadvertent drug overdose by his doctor. Robert was pretty sniffly that week and I half-joking said to my daughter that Robert was going to end up in the hospital by the following week. DEAR UNIVERSE: I PROMISE NEVER TO JOKE ABOUT THAT AGAIN! By the time Richard was home and ... Read More »

On Pneumonia Watch

How bad can it be? He's got a shake & a puzzle!

I am not an alarmist. I think I’m pretty practical and level-headed. Even a realist when warranted. With Robert, I do have to be on alert with his health since he can go from having a slight cold to the ICU with pneumonia and septic shock in a matter of hours. Well, we’re at the “slight cold” stage. Yesterday, he had a little bit of nasal congestion and a slight cough. Today, he also had ... Read More »

Co-Caregiving: Recognizing the Pitfalls and Avoiding the Sinkholes

Co-caregivers need to have fun a few kisses

(This is reprinted from @Trish’s personal website I have to break it to you: Co-Caregiving is not all roses, sunshine and success. Yep, there are bad days.  On my good days, I will break down that bad day (or days) into moments and realize we had some bad moments. Of course, who wants to be so rational on a bad day?? Co-caregiving situations can vary and since the relationships vary, so do the pitfalls.  ... Read More »

Co-Caregiving: Tips for Success

Trish and Richard with Robert in the middle

(Reprinted from Trish’s website Our caregiving situation is not unusual. According to a 2009 study conducted by the National Alliance for Caregiving in collaboration with AARP, approximately one-third of caregivers care for two or more people. In our own situation, I am the primary caregiver for my brother, Robert, and Richard (@kreisler) is the primary caregiver for his mom, Carol. To add to the mix, Richard is a caree himself because of his chronic ... Read More »

When Things Are Too Much


“I was wondering if this would be too much for you.” Denise recently asked me this but she wasn’t referring to caring for Robert.  She knows Richard and I can care for Robert and that bringing him into our home was the right decision for us. She was referring to an interview she asked me to participate in. Denise had invited me on her show to discuss working and caregiving with a panel of other working ... Read More »

Welcome Home, Robert


No more rationing how many nights Robert can sleep over; No more arranging doctor appointments not only around my schedule, work and when Robert is sleeping over but New Home schedule; No more worry if he is wearing clean pants every day (and a dry brief) or if I have to change him before bringing him home; No more calls from Robert asking if he can come over a day early and having to explain ... Read More »

Slaying the Medication Worry


Medication dispense times per day: 7 Total number of pills to give per day: 25 Medications to keep filled on time: 9 The consequences of screwing this up: severe (increased and/or prolonged seizures, physically hurt from increased falls, increased memory and balance problems). Worst case scenario: I don’t even want to think about it. My number one concern about Robert moving in is, by far, Robert’s medication.  (Keeping the freezer stocked with Rocky Road ice ... Read More »

Preparing for Move-In


My checklists have checklists (and that’s on a normal day). Preparing for Robert moving in? Let’s just say my checklists are having a tough time keeping up. Preparations are well under way and tasks are being crossed off the list at pretty good clip! I started the move prep by creating a checklist (shocker). I quickly found that a move date of “sometime in April” was not going to work with transferring prescriptions, supplies, benefits ... Read More »

Universe, Are You Testing Me?


On Tuesday, I announce that Robert is going to live with us starting in April. On Wednesday, the Wonderful New Home House Manager calls to tell me Robert is not feeling well and wanted to stay at New Home instead of going to Day Program.  Robert has had a cold/flu all winter and has periodically missed his Day Program to stay home and rest.  Between living in a home with six guys and going to ... Read More »

Burying the Lead


Robert has lived in New Home for two years. Before that, beginning in 2009, he lived in an assisted living facility for older adults (he had an exemption since he was under 50 years old) for two years. In the last part of 2008 and early part of 2009, Robert had a long-term stay in a hospital due to a life-threatening infection which was perilously close to invading his brain. Robert had been in a study ... Read More »

The Tough Talk: End of Life


Chris (aka @thpurplejacket and The Bow Tie Guy) cares for his partner, Richard, who has esophageal cancer and was given three to four months to live – 16 months ago. Chris is an inspiration to me in so many ways; he is a loving caregiver to his partner and is an avid advocate who created his blog The Purple Jacket to focus on “LGBT Seniors and the struggle of aging in a straight society.” Chris is ... Read More »

What Epilepsy Means to Me: Slideshow


I know I’ve been absent – Robert was sick, I was sick, work is crazy busy . . . but on to the good news!  (Even though I wasn’t commenting as much as I would have liked, I was reading and thinking of all of you). My local paper, The Sacramento Bee, created a gallery called “The Faces of Epilepsy” based on some of the interviews I did on my blog during Epilepsy Awareness Month. ... Read More »

November: Epilepsy Awareness Month


Affected by Epilepsy? I want to know your story. Everyone has a story and in honor of November Epilepsy Awareness Month, I want to help you tell it. (November is also National Family Caregivers Month and Denise has some exciting events planned). What Robert’s Sister will be doing in November is posting interviews of people who have Epilepsy or who have been affected by Epilepsy in some way. (In case you’re wondering, October around my house is “Getting ... Read More »

Neurology Appointment: The Good, The Bad, The Ugly


The Good:  For years, Robert was treated for his epilepsy at UCSF which has a prestigious epilepsy center.  Robert tried out the Vegus Nerve Stimulator, participated in a study for the Deep Brain Stimulator study as well as underwent two brain surgeries by world-renowned surgeons.  He really has received the best care by the brightest researchers in the field of epilepsy. Even though Robert’s seizures continue to be uncontrolled, his seizures changed from Tonic Clonic ... Read More »

The Mouse Has Been Disrupting


Hello!  I know it has been quite some time since you last heard from me. Too much has occurred and I had to let some things slide to keep up. I LOVE the DISRUPT T-shirt…and I’m waiting to get one along with the new book. Every time you create these things, I can take them and use them in the communities that I work with. Keep up the good work(s)!!! So what have I been ... Read More »

Shortest Post You’ll Ever See From Me


I know I tend to ramble but this is not one of those times.  Robert is out of the hospital and I’m exhausted.  I’ll fill you in more tomorrow.  The important part is that Robert is out of the hospital and (keep your fingers crossed) infection free.  Thank you for your prayers, thoughts, well wishes and positive vibes – it worked!  Hugs to all of you! Read More »

Who Knew Hospitals Had Roller Coasters?


Let’s get this out there: I do not like roller coasters.  I will go on them to push myself outside of my comfort zone but I am terrified during the ride.  Afterwards, I may say I was glad I pushed myself but can’t actually recall if I’ve said I’ve enjoyed the experience.  (My denial defense mechanism is working just fine!). During my 50th birthday celebration at Disneyland and California Adventure, I went on “California Screamin.” ... Read More »

Robert Update


The first thing I want to tell all of you is how much I appreciate the outpouring of support and concern from you. Believe me, it has helped me through the last few days even when I haven’t been able to post here or keep up with you and your carees. I will catch up – promise. Robert was admitted to the hospital on Friday. There was some debate about putting him in ICU or a regular ... Read More »

Total Extremes


I wanted to write a quick update and promise to update you more later. Yesterday, Robert and I were interviewed for a nationally-aired, AARP-produced-for-PBS TV program “Inside E Street.” Woohoo! It was exciting and nervewracking and I joked with Robert that he was a TV star. He loved it. During the interview and time with him yesterday I noticed he was more sluggish than normal (dragging his foot more, falling asleep). He stayed with us ... Read More »