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Caring for Siblings

Read the blogs of those who care for siblings.

Decisions, Part 2

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(Editor’s Note: You can view Decisions, Part 1 here (http://www.caregiving.com/2014/04/decisions-part-1/.) I always knew that I wanted to get married and have children someday. However, now there was the very real possibility that I would someday be responsible for my disabled brother, and did I want to bring innocent children and a husband in to that picture? Could I adequately give everyone the attention they deserved? Was that arrangement fair to them? I first focused solely ... Read More »

This Thing Called Hope

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We are now done with Week 2 of Take 2 of the new medication.  We were this close to not making it through Week 1 but we all pushed through and decided to give this new medication more time. Richard and I were more prepared this time going into the new medication at the lower dose than we used before.  We knew what to watch for: excessive sleepiness, trouble walking and extreme irritability.  I was ... Read More »

Decisions, Part 1

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In the months after Dave’s accident, as he went from an ICU to eventually a skilled nursing facility all the while lying in a persistent vegetative state, it became clear that there wasn’t going to be a miracle recovery. We slowly began to realize and accept that the Dave we knew and loved from before was gone. He was never coming back. We had to learn to live with our new reality of caring for ... Read More »

You Can Have Both

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(Editor’s Note: Today, we welcome a new blogger, Laura, who cares for her brother. You can connect with her on her profile page: @bro5wt.) I’ve started this blog about 50 times in my head but every time I sit down to write the first post nothing comes out. I feel like there is so much to say I just don’t know where to start. I suppose the best place is why. Why am I even ... Read More »

New Medication – Take Two

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The decision to take Robert off of Trileptal (Oxcarbazepine) was very difficult. It felt as if I was saying, “Why no, Robert, you can NOT have seizure control.” Robert has tried his entire life to achieve seizure control. Our parents did what they could in order to reach that goal when he was a child. When Robert lived on his own, he signed up for any and all drug trials possible (by this time, against ... Read More »

Leave Room for a Little Sunshine

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Rock, meet Hard Place but leave some room for a little bit of sunshine. Robert’s nighttime cough was worse by Friday even though he was on cough medicine. He was not sleeping well. The coughing and congestion was so severe he threw up a few times in the middle of the night. (He made it into the bucket about half the time and since I’m a glass half-full kind of gal, I consider that a ... Read More »

Changing Medication: At What Cost?

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Every now and then Robert’s neurologist wants to try a new medication. Robert is on a litany of drugs right now yet his seizures remain uncontrolled. Over the past few months, Robert’s seizures have been coming in clusters and have been more frequent.  I have not been a fan of changing his medications even though his seizures are uncontrolled. That may sound terrible and irresponsible but medication changes have caused horrific problems for him in ... Read More »

A Day with a Family Caregiver

A favorite caregiving moment

Richard (@kreisler) and I recently participated in a project created by Denise, Chris MacLellan, founder of ThePurpleJacket.com, and Rajiv Mehta, founder of Unfrazzle. It is easy enough to do: keep track of your caregiving day on a log provided by Denise and Raj. Denise, Chris and Raj created the log and are asking caregivers to participate (visit here for more information.) Before completing the log, I thought my caregiving day consisted of getting Robert ready for ... Read More »

I Am Going to Yelp!

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Now that work is back to the “usual busy” instead of the “I’m losing my mind busy,” I am catching up on the non-urgent appointments for Robert. We finally got his new helmet – just in time too.  Robert and I had gone to pick it up a few weeks ago but the wrong helmet was ordered so we had to wait for the right one to come in. (Robert needs a hard shell helmet, ... Read More »

Drastic Times Call for Drastic Measures

Co-caregivers need to have fun a few kisses

Winters are a stressful time at our house.  Richard, (aka, my husband and @kreisler), has increased back pain due to many factors: the cold weather, the extra activities from the holidays, the increased stress due to the holidays and, of course, the denial that the pain has increased. Not to mention not remembering this happens Every. Single. Year. For my part, my job is extra stressful from November through January.  Year-end projects are a nightmare ... Read More »

Hello, 2014!

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Boy, am I happy to see you.  I don’t want to offend 2013 but between us, I am happy to see 2013 go.  I mean, 2013 had its good moments but it also had its challenges. Lots of challenges. Wow, lots and lots of challenges. Let’s just say the countdown to 2014 was more about saying goodbye good-riddance to 2013 (not that I actually made it to the countdown but I made it to countdowns ... Read More »

10 Tips for Caregivers While Traveling

G-J and Trish meeting in Disneyland (2012)

By @trish & @G-J Trish: I have never considered myself much of a traveler, probably because I grew up in Nebraska and only traveled to Kansas, Missouri, Iowa and South Dakota during my first 17 years. See a theme? All surrounding states. I had always dreamed of going to California – my friends and I discussed California at length without really thinking we would ever get there: the beaches, the movie stars, the surfers, Hollywood ... Read More »

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

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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 »

Another Day, Another Visit to the ER

Richard with his brother, Jim, who hung out with him at the hospital

I am not making this up. Soap opera writers are starting to call me for story ideas. I expect my evil, identical twin to show up any minute now. (Okay, that part, I’m making up.) Richard (@kreisler) normally has swelling in his lower legs. He wears compression socks to manage it and recently ordered one of those nifty compressor machines that hospitals use because we noticed his legs were getting a bit more swollen than ... 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 »

Choosing Pain or Taking a Risk

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Richard survived the unintended Fentanyl overdose and was released on Friday – our 16th anniversary and Robert’s birthday.  It certainly was a day to celebrate! What a difference a year can make. A year ago, we were in Rome and then on a cruise to France, Spain and Italy again. It was the trip of a lifetime (after a year, I can forget about the pain Richard was in after the flights, the lost luggage ... Read More »

Richard is in the ICU (what?! who?!)

Me in ICU, I knew my daughters loved me. 09052013

Richard is in the ICU. Not Robert. Richard. I’m as shocked as everyone. As many of you know, Richard has severe back pain and it is managed with an intrathecal pain pump filled with Fentanyl. This is refilled every 60 days or so. He had a pump refill appointment early this morning and he walked out the door like any other day.  Well, except that our puppy, Taz, escaped and we had to chase him ... Read More »

A Caregiving Story

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We have lived in our house for 16 years and have raised three kids and countless animals in it. It is a modest-size home but seemed gigantic to us when we first moved here because we were coming from an apartment. An apartment which had the girls (who were pretty little at the time) crammed into a room together, literally having to walk on top of their beds to get to the other side of ... 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 »

With Just One Click…

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(I have to apologize for posting without having commented recently. I promise to catch up but know that I read all the blogs and even though I don’t always comment, my heart is with each of you.) Here’s my latest tale: It is unbelievable to me how much stress one inflexible bureaucrat can create. My head pounds. My stomach turns. My mind races. My breath has been taken away by a young woman at the ... Read More »