Saturday, May 6, 2017

Always One More Thing

For caregivers, there is always one more thing.

Add another specialist? Sure, no problem.

Always excellent.
Increase the number of appointments per year with a doctor (or multiple doctors)? Of course; it’s needed.

Increase blood tests/CT scans/MRIs/x-rays? Okay. We will fit those in.

Can you add brushing his teeth to the daily routine? And bring him in more frequently for cleanings? Okay.

Don’t forget to floss his teeth, too. Sigh.

Then, there is the “caregiver creep.” You know how it is. You start out with a walker and end up with a regular walker, a 4-wheel walker, a wheelchair, a transport chair, a shower chair, an acapella device, an inhaler, a nebulizer, an oxygen machine and hospital bed.

And that’s just off the top of my head.

We always get used to whatever changes or additions are made to our routine. We have to – it’s what we do!

It is what caregivers do!

It helps that the loved one I care for has an unbeatable, excellent attitude. He is a good sport about everything and only occasionally gets cranky (usually when he’s tired or recovering from a lot of seizures).

There are times, though, when the one more thing just is too much. It is the last straw, which, for caregivers, means we just need a minute to regroup and then we will get back to managing and coping and accepting again.
Robert can even fall asleep with this on!

For me, it was the flossing. Really? It isn’t that I can’t do it or do not see the importance of keeping his teeth and gums healthy in case he aspirates during a seizure but it is another task added to an already lengthy and time-consuming list. It is the time-consuming part that is so maddening. Those five and ten minute tasks add up!

I could see the benefit since his bouts of pneumonia and the severity of them diminished (at least they had before this year). The extra dentist visits and increased oral hygiene really was helping! (I have to admit, however, there is no way I can floss Robert’s teeth twice a day. I’m lucky if I can do it on the weekends but I do it when I can.)

This year, though, he has had pneumonia twice! It didn’t land him in the hospital but he was pretty sick. Richard and I were able to take care of him at home while monitoring his vitals, using the nebulizer and keeping in close touch with his pulmonary team.

Robert not only has Restrictive Lung Disease and recurring pneumonia (well, along with his epilepsy and other issues), he has the darndest time coughing! It is difficult for him to purposefully make himself cough to get the gunk in his lungs out. This means it sits there and germinates, creating a little bacteria paradise (for the germs, not Robert).

We use the nebulizer with Albuterol followed by a saline solution which occasionally makes him cough. He also uses an Acapella which is a device he blows into to help exercise the lungs.

Nothing produces a really great cough, though.

The solution? More equipment!

During one of Robert’s hospitalizations he used a TheraVest which is kind of like a life jacket on steroids. It fits snugly on Robert and hooks up to a machine which blows up the vest and makes it shake. It also pushes up a bit so Robert almost has to cough! It is a pretty cool device.

Robert’s pulmonary team decided after his pneumonia in March that he should have one of these vests at home. Genius! When he has pneumonia we will put that on him and get the gunk (yes, that’s a technical term J ) out and he will have a quicker recovery period.

Or so I thought.

The approvals finally came in and a nurse delivered the vest. The set up and training took much longer than expected but that was fine, the nurse was nice and knew what she was doing. Robert was a good sport trying it on and going through a session. The nurse explained the machine was pre-set to take Robert through a 30 minute session.

Okay, no problem. Thirty minutes when he is sick in bed is not an issue. He will be able to do it and it will help him cough and then breathe better. Awesome!

The nurse continued with the instructions, glanced at her notes and said the doctor ordered the treatment twice a day for 30 minutes each time.

Wait. What? Twice a day? Thirty minutes? Really? It takes two hours for Robert to get ready in the morning, two hours to eat dinner and he has to be in bed by 8:00 in order to get enough sleep to stave off seizures. (Not to mention the time in the bathroom for changes and grooming!)

Well, crap. When are we supposed to fit this in? How am I supposed to work full-time, get Robert enough sleep, take care of all of his other personal care tasks and maintain my sanity?

Yeah, I let myself take a minute to have a little mini-meltdown. (In my head, of course – the nurse was still here after all.)

It took all of a day to figure out how to add this into the routine. We definitely cannot get Robert up any earlier in the morning but Richard suggested Robert use the vest when he gets home from Day Program. Then I set him up with it after he has eaten dinner and we have finished the post-dinner routine. He gets to watch television with it on (although the machine is very loud so going deaf will just have to be something we deal with in the future).

So, yes, I allowed myself a meltdown but then pulled it together and Richard and I figured out how to manage this one more thing. That’s what we do.

That’s what caregivers do.

Let yourself have that meltdown but then suck it up and get to work. That’s what we do.

That’s what caregivers do.

It has been less than a week of our new routine but it is working out and Robert has had some productive coughs. We might have days when the routine is not going to work and we can’t fit everything in a day but we are going to do the best we can. That’s what we do.

That’s what caregivers do.

(For a slightly different, less angst-filled perspective, please read Richard’s post about this same topic. Richard is definitely more of a “let’s do this” kind of guy.)

Thanks for reading, everyone. I don’t say that often enough!

Love,

Trish

Thursday, April 27, 2017

Epilepsy Awareness and Advocacy: Interview with Coach Jerry Kill

I don’t know how I got so lucky! Coach Jerry Kill’s marketing team recently contacted me and asked if I was interested in interviewing Coach Kill.

Coach Kill, the former head coach of the Minnesota Gophers?

Coach Kill who continued his high-profile job while seizures very publicly besieged him?  

Coach Kill who became an inspiration to those with epilepsy and those of us who care for someone with epilepsy?

Yep, that Coach Kill.

You want me to interview him?

Pinch me! I must be dreaming!

Typically, I run interviews throughout the month of November to bring readers the stories of those with epilepsy and those caring for someone with epilepsy. November is officially “Epilepsy Awareness Month” but, as anyone with epilepsy knows, epilepsy really doesn’t care what month it is! Seizures happen whenever and wherever.

Even to a head coach on the sidelines of a nationally televised football game.

This interview cannot wait until November! I so appreciate Coach Kill taking time out of his busy schedule (on a Sunday, no less!) to talk to me about his epilepsy and how he is using his high-profile platform to help others.  

My interviews are typically written but Coach Kill wanted to have a phone interview instead. I quickly agreed and had a wonderful conversation with him. He is easy to talk to and didn’t even mind that I am a Huskers fan. In fact, he said he has lots of friends who are Huskers!

Robert’s Sister: Coach Kill, thank you for taking the time to answer a few questions about your epilepsy and advocacy work. When were you first diagnosed with epilepsy?

Coach Kill: I was officially diagnosed with epilepsy in 2006. I had a few things that happened before that. Nobody knew too much about it.

Robert’s Sister: You also had cancer. Did the cancer bring on your epilepsy?

Coach Kill: No, the cancer didn’t have anything to do with it. It was coincidental that epilepsy was caught around the same time.

Robert’s Sister: Being diagnosed with epilepsy as an adult can be a life-changer. Tell me how you dealt with the diagnosis.  

Coach Kill: I was the head football coach at Minnesota at that time and stayed for five years after the diagnosis. It is hard to balance out life beyond football. I didn’t sleep a lot and didn’t eat right. All the things you aren’t supposed to do to control seizures, I did. I am wired to take on tough jobs but the body can only take so much.

Robert’s Sister: You became an inspiration to many (including me) after demonstrating such perseverance. What gave you such strength to keep going? You must have a very strong support system.

Coach Kill: I am wired to keep going and I do have a great support system. Kammie Powell – one of our athletic trainers – knew what to do on game day if something happened.

My wife, Rebecca, and kids, Krystal and Tasha, have been there through all of it. I have the right people in my corner.

Jill Gattone (of the Epilepsy Foundation) introduced me to Dr. Brien Smith who is a neurologist in Grand Rapids, Michigan. I had hit rock bottom. I never missed a game and then I had 16-17 seizures in two to three days. Dr. Smith did a great job in getting my seizures under control.

Dr. Patricia Penovich – she’s with the Minnesota Epilepsy Group– also partnered with Dr. Smith to help me.

I haven’t had any seizures in about a year and a half.

Robert’s Sister: What type of seizures do you have? My brother has Complex Partial Seizures (even after two surgeries and loads of medications).

Coach Kill:  I have both the grand mal or tonic clonic seizures and the staring (absence) seizures.

Robert’s Sister:  What treatments have helped? 

Coach Kill: Definitely medication but also exercise and diet and I am sleeping a lot better. I used to have trouble sleeping and would only sleep two and a half to three hours a night. I am sleeping a lot better now.  

I still communicate with Dr. Smith even though I am now in New Jersey. I am in the process of finding a doctor in New Jersey and Dr. Smith is helping me with that.

Also, I am active in helping other people with epilepsy and have my own foundation.

My wife and daughters have been through it all with me.

Robert’s Sister: Did your family treat you differently after your diagnosis?

Yeah, my wife probably did. She was very cautious about what I was doing, worries and is hyper-alert. She is very worried about me having a seizure at night. If I am on the road and don’t call for a while, she worries.

My wife was part of the reason I considered leaving as head coach. I was tired of putting my family through it all. Once I left the coaching position at Minnesota in 2015, I basically did my own program: exercising and eating right. We went to Florida and I did some speaking, wrote the book (Chasing Dreams: Living My Life One Yard at a Time) and laid low. I realized I was very exhausted.

Robert’s Sister: What are you up to now?

Coach Kill: After a while, I went to Kansas State as an Associate Athletic Director and am now Offensive Coordinator at Rutgers. I am enjoying doing what I am doing and my body is able to handle it. I didn’t want to give up what I love to do but being a head coach – it’s a lot different than being an assistant coach. I had to make a compromise.  

Robert’s Sister:   What is the biggest impact epilepsy has had on your life?

Coach Kill: The other people that have it. I have been fortunate that I can still do what I love to do. So many people cannot. I had no idea about all the issues. I had no idea that 1 in 26 have it – no idea. I didn’t even know what an epileptologist was. Just the awareness and the struggles that a lot of other people with epilepsy have. Even prestigious people in high ranking positions in companies who don’t want to share they have it. Lots of people worry they might lose their jobs. I am lucky that I have a platform but am inspired by others that don’t have a platform and still keep going.

Robert’s Sister:  Please tell us about your book Chasing Dreams: Living My Life One Yard at a Time. What made you write it?

Coach Kill: I had the time and could write it on the beach with my co-author, Jim Bruton. Jim kept on me about it. It is something where I could talk about football, my life, epilepsy, cancer and my views on certain things. All money raised has gone to my two foundations (Coach Kill Fund and the Chasing Dreams Coach Kill Epilepsy Fund).

Robert’s Sister: You have become a vocal advocate for those with epilepsy. Tell us about your foundations and your campaign to #TackleEpilepsy.

Coach Kill: The Coach Kill Fund is based in southern Illinois and we have teamed up with Southern Illinois Healthcare. Many people with cancer in southern Illinois need to go to St. Louis for treatment which is quite a distance.  The Coach Kill Fund raises money to help if a person has to go to St. Louis for a few days. People apply for funds and the money gets to them in just a few days. The money helps cover costs for hotels, gas expense, medications, travel, childcare, etc. and even funerals.

The Chasing Dreams Coach Kill Epilepsy Fund is affiliated with the Minnesota Epilepsy Foundation. Money goes toward Camp Oz (a camp for kids with epilepsy) and to the Seizure Smart Schools program.

Robert’s Sister: Is there anything else you’d like to say?

Coach Kill: One of the best things that has happened to me because of all of this happened last night at our spring game. Five years ago, someone from Pennsylvania contacted me about his son who had epilepsy and I sent him an autographed picture. Last night after the game, a kid came up to me and said he wanted to shake my hand. He said he was the kid I sent the autographed picture to and he showed me a photo of it on his phone and told me how much it had meant to him. That made my night. It was better than winning any national championship.


Well, Coach Kill, you made my day and I am sure you have many, many other fans. Thank you for your advocacy and your generous spirit. I didn’t think it was possible but I am even more inspired by you than I was before! It really is amazing how even the smallest kindness can make a huge impact on someone. Thank you for all you do!  

Please be sure to check out Coach Kill’s book as well as his foundations.

While I am still a die-hard Huskers fan I will definitely start rooting for Rutgers too!    

Trish


Sunday, April 2, 2017

Organizing Robert’s Room: A Win for All of Us

It is hard to believe Robert has lived with us full-time for four years! The first couple of years he lived in our family room and used a downstairs half-bath – no tub; no shower. Boy was he clean, though! It’s amazing how clean a person can get just using a shower chair, a bowl, sink and a thousand towels.

I would never have believed we could do that for two years but it worked. Robert was happy living with us and Richard and I just had to be creative and flexible to make it work for us too.

We moved to a one story house almost two years ago which means Robert has his own room and – bonus! – a bathroom with a shower and tub. He is ecstatic having his own room and I cannot believe how much I appreciate a full bath!

I’ve realized how important it was to have the experience of the first two years, though. It really made Richard and I think about how to efficiently and safely care for Robert in a less than optimal situation. Having to give him sink baths every day for two years makes it easy for me to return to those when he is sick.

Robert’s mobility is one of the first things to go when he is sick. He can’t stand up straight, can barely move his legs forward and certainly can’t turn or step backwards (as is necessary to get into the tub chair). So when Robert is sick, as he has been quite often these past several months, we go back to the sink, shower chair, bucket and towels routine. Even if he can’t move well, he still needs to be cleaned up.

When we first moved to our new house, we organized Robert’s room with his input. Having a television was very important to Robert so Richard mounted one on the wall so Robert could easily see it when he was relaxing before he went to sleep at night. It took a while but we finally got Robert a hospital bed so we could keep his legs up to reduce his edema and keep his head up a bit to help with his breathing and coughing.

His room was filled with family photos as well as a couple of collage boards with his get well and birthday cards he has received through the years.

The oxygen machine was set up so it was easily accessible and the charts we keep for him were on a dresser holding some of his “back up” clothes. (The most used clothes hang in his closet.)

After a while, he collected more medical equipment. He needed a nebulizer so we added that to a corner of the room. He was frequently sick so we kept the humidifier in his room as well. Add a standing fan during the summer since his room tends to stay warm as well as a CD player and an iHome player for the music he likes to listen to when he falls asleep. Half the time, we keep his transport wheelchair in his bedroom so he can use that when he is sick (the larger one is too big to easily move from the narrow hallway and turn into the bathroom).

The room was getting a bit crowded!

Robert had pneumonia this past October and again in January. Thankfully, his medical team agrees it is best if we can keep him out of the hospital when he is this sick. There is such a decline after a hospital stay and if we can administer antibiotics and keep track of his vitals regularly at home (need to keen an eye out for Sepsis), then there is no reason to send him to the hospital.

Keeping him home when he is running a fever, coughing and barely mobile is a challenge but his doctors trust us enough to know we will send him to the hospital if he takes a terrible turn for the worse. (It helps to have the most caring Nurse Practitioner on the planet in daily contact – she even gave me her cell number in case I can’t reach her in the office.)

When Robert was sick in January I realized his room had to be reorganized. I was squeezing between his bed and the window in order to take his vitals and the oxygen machine tubing was unorganized and a mess. I was stressed out enough worried about Robert and being hyper-vigilant with his vitals and needed to make things a little easier on myself.

Once Robert recovered and was spending more time in other parts of the house instead of most of the time in his room, I went to work. I put the medical gloves on, grabbed the cleaning supplies and turned on some music.

I meant business.

I cleared out the unnecessary crap in his room. If he didn’t need it, it was gone. Does he need a CD tower with a hundred CDs? Nope. He listens to one or two. Does he need this extra table in the room? Nope. Gone. He does need better lighting so a standing lamp from my office was relocated to Robert’s room.

I reorganized the supplies in his closet, on his dressers and moved the oxygen machine. I hung hooks so I could organize and loop the pesky tubing on the wall to keep it off the floor. I moved the nebulizer, humidifier and blood pressure machine so they were easier for me to access when needed.

I made sure his personal touches were still visible (calendar, bible, photos and collages). We even went shopping when he was better and found a 49er blanket on sale!

Things were looking good.

When he got sick again in March, the room was put to the test! Thankfully, everything was in easy reach and I wasn’t doing gymnastics in order to use the nebulizer or refill the humidifier.

The room fulfilled two purposes: it was personalized to make Robert happy and it was organized to make things a little easier on me.

I’m sure there will be more changes to come depending on Robert’s health and the addition of even more equipment but I know Richard and I can make do with whatever is thrown at us and am confident we can make a few changes when needed to make all of us happy.

It’s important to me that Robert is comfortable and happy but equally important that things are set up in a way that Richard and I, the caregivers, are happy and comfortable too.

Everyone wins. Nothing wrong with that!  



Tuesday, March 7, 2017

What Would You Do Without Taking Care of Robert?

We all say things that come out different than we had intended. “I’m worried about you” sometimes comes out as “Boy, do you look tired!” Everyone does it but caregivers probably hear more than their fair share of ill-advised comments from good-intentioned people.

Trish, Robert and Richard
Robert is sick right now and, like many caregivers, I keep family and friends up to date on how he’s doing through this blog but also on Facebook, Twitter and Instagram. Robert always gives me a big smile when I take his picture and then loves it when I tell him everyone on the computer is wishing him well and thinking about him.

He’s a big ham that way.

I love the comments and support, too. It is comforting to know so many people love Robert and want him to be his excellent self all of the time.

Every now and then, though, a comment slips through that is well-intentioned but makes me bristle. One of my most favorite extended relatives made such a comment and I know he didn’t mean anything by it. He’s got a huge heart and kind of took us three “kids” under his wing once our dad passed away a few years ago. I love him to pieces.

I really think his question deserves an answer, though.  

“What Would You Do Without Taking Care of Robert?”

I know I am not the only caregiver to be asked this question so let me take a minute to tell you.

I couldn’t respond right away because I was giving Robert his medications and starting his nebulizer so his airway would open up a bit tonight and, oh yeah, I had to put his oxygen on him since his wheezing is loud enough to hear in the next room, but here’s your answer:

If I wasn’t caring for Robert, I would get a good night’s sleep. I wouldn’t need to wake up every four hours to take his vitals when he is sick. I don’t even need an alarm to wake up through the night – the worry about sepsis is enough to keep me in a light sleep until it is time to check his temperature and pulse rate. Even when he is “well” I have to wake up at 5:30 a.m. to give him his medications. A good night’s sleep is a luxury for caregivers.

If I wasn’t caring for Robert, I would be able to work a full week without taking time off for doctor’s appointments, physical therapy appointments and meetings at his Day Program or with his social worker.  

If I wasn’t caring for Robert, I would have a lot more money. The briefs we get through his Medicaid? They’re fine for an hour or so but Robert needs more protection than that. We buy him heavy duty briefs so he doesn’t leak through to his clothes when we go out or at Day Program. We buy wipes for bathroom clean-up and gloves for the same purpose. We go through laundry soap like it’s water and, speaking of water, we go through a lot of that too because of the five or so loads of laundry we do every day. He is on a lot of over-the-counter medications which are not paid for by insurance or Medicaid but they are essential to his well-being. Regular dental visits keep pneumonia at bay so we pay for those too. Robert’s social security helps pay for some things but, believe me, I am not coming out ahead when it comes to his expenses.

If I wasn’t caring for Robert, I would visit the ocean with my husband! Sure, we can take Robert on vacation with us (and have – our Disneyland trips are amazing and memorable and I wouldn’t trade them for anything). Occasionally, it would be nice to go away with just my husband though. Respite care for someone that needs as much care as Robert is tough to come by.

If I wasn’t caring for Robert, I probably wouldn’t feel like Norm from Cheers every time I walk into the pharmacy. Between prescriptions and over-the-counter meds, Robert takes 41 pills a day. Forty. One. That’s sixteen different medications that I keep track of because he cannot go one day without any of them.

If I wasn’t caring for Robert, I might have more intimacy with my husband. Sorry to get personal but sheesh, you asked the question. It is not easy to have the energy for extracurricular activities when I am exhausted by the end of the day. I’m lucky to stay awake for a mindless crime drama or two. Sometimes I cannot even watch shows that require a little brain power because my mind just can’t think about one more thing.

If I wasn’t caring for Robert, I would write more! The topics I write about are usually related to caregiving so I would probably have to start writing about cats or something but at least I would be writing. Writing feeds my soul so I know I would definitely write.

Don’t misunderstand me. I love caring for Robert and I know this is a choice Richard and I made. We do not regret it for a minute. I am grateful that I have been able to get to know Robert more than I ever did when we were younger. I am grateful for Robert for teaching me to enjoy simple things in life and to laugh about silly things. I am grateful for Robert’s smile and his ability to declare everything excellent and my food delicious (even when I know better).

I am honored to care for Robert.

But is there anything that I would do if I wasn’t caring for Robert?

You better believe it.