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.

Wednesday, February 22, 2017

Home Alone

Thursday night: Richard finishes packing for his trip to see Airforce Son before his deployment. Taz sniffs the suitcase, tries to get into the suitcase then paces around the house.

He then pees in my office. (Hey, I’m not the one leaving! Pee in Richard’s office!)

I decide to lose five pounds while Richard is gone. It’ll be easy: stop eating junk.

Field trip! 
Friday morning: I take a vacation day from work and Robert is off to program. Richard doesn’t have to leave until early afternoon so we run to Walgreens to get more supplies for Richard’s leg which is not healing and I get a few things for the house. We watch a couple of our recorded shows once we get back home.  

We both eat a small bag of chips while watching the shows.

Hmm. Apparently, I’ll “stop eating junk” later today.  

Friday afternoon: Matt, our future son-in-law (wow – still practicing that one!), comes over to take Richard to the airport.

I have about 90 minutes before Robert comes home.

First, I turn off the television and can’t believe how quiet it is.  

It is glorious!

I go through my to-do list in my head and start with cleaning my office. First, I tackle the filing that has piled up.

By the time Robert gets home, I have most of it done! Who knew filing would make me so happy!  

Robert is home so I break from filing and go through the usual routine when he arrives home (give him treats to give to the dogs, take him to the restroom, put away his lunch box, refill his travel bag with briefs, get him settled in his recliner to relax and watch Family Feud.)

Back to the filing! To my delight, I get it done before dinner time. Woohoo!

Friday evening: I make mini burritos for Robert and decide I will skip dinner since I had a sandwich during my filing frenzy.

Eventually, I break down and eat a bowl of cereal.

Note to self: work on planning better dinners for us.

Friday night: I get Robert in bed after his dessert of Rocky Road ice cream (he’s not the one trying to lose five pounds!). The dogs and I snuggle and watch television. How is it they can still hog the entire bed even when there is one less person in it?

I set my alarm for 6:00 a.m. instead of the usual 5:30. Robert’s first morning medication is at 6:00 so I can just get up and give him meds.

I’m going to sleep in!!

Saturday morning: I wake up at 5:15. Sigh.

I let the dogs out, make some decaf coffee, feed the dogs and, at 6:00, give Robert his meds. He goes back to sleep; I pay bills and work on our taxes.

This paperwork puts me behind on my cleaning goals but I get some cleaning done before Robert wakes up.

The house is quiet except for the noise of the washer which is constantly running in this house.

Robert wakes up before I can get much cleaning done but at least I finish two rooms.

Saturday afternoon: After I giving Robert his bath and settled in to eat his breakfast, Rachel comes over to deliver an Iced Chai! Taz, Oz and even Taffy go crazy with happiness seeing her. Robert lights up when she comes over, too. We discuss wedding plans for a while then she leaves to meet a friend.

Robert, the dogs and I say our goodbyes and I close the door. Robert says, “What is her name again?”

“Rachel.”

“That’s what I was going to say.”

He enjoys her visits even if he doesn’t always remember her name.

Robert watches some Family Feud and works on his puzzle book for a bit. I get back to cleaning!

Saturday late afternoon: I take advantage of the break in the rain and take Robert to CVS. He has meds that are ready and I need more furniture polish.

On the way home, I pick up dinner: salad for me; turkey and mac & cheese for Robert.

That should make up for the mini Cadburys I couldn’t resist while at CVS . . .

Saturday night: Robert gets Rocky Road ice cream two nights in a row! We do his usual bedtime routine. I print my “bucket list” spreadsheet of every single Best Picture winner to see which one I should watch tonight.

I text Rach that I really want frozen yogurt. She offers to get it for me but I decide I better not since I remember those mini Cadburys I ate earlier.

I’m hoping I can lose at least one pound at this point.

Back to my spreadsheet. I pick “Ordinary People.”

Good thing I didn’t have FroYo. I have a pit in the bottom of my stomach throughout the entire movie. I realize it is best I watched it now instead of when it came out in 1980 since my family was going through its own dark period at that time and it really would have been too much. 

Sunday morning: I wake up at 5:15 again. Seriously?!

Back to cleaning.

Richard texts me: “I think I may have to change the leg wrap. I keep getting a scent of infection. But it could be the hotel room.”

I bust out laughing but eventually call him to be sure he is okay. I know he is a little panicky about his leg so we talk and decide the smell actually is the hotel room – probably from all the wet, snowy clothes people track in from the North Dakota winters.

I turn on the Sunday news shows while doing laundry and cleaning.

The house is getting a bit too quiet.

Sunday afternoon: Robert sleeps late again so I am making progress on the cleaning! The dogs track in mud after I mop and since it appears the rain won’t stop until July, it’s a futile attempt to actually keep it clean. The floors are at least clean for five minutes – I’ll take it!

I make Robert an omelet for his breakfast/lunch. Usually, he gets oatmeal but thought I’d give him something special today.

Rach offers to pick up anything I need from Target! Wonderful! This saves me from having to take Robert out in the rain. I mobile order drinks from Starbucks for us so she delivers groceries and a mocha (decaf, of course). That’s my girl!

Richard texts me that he is at the Minot, North Dakota “12 store mall” with Christopher and his girlfriend. Richard is sitting while the “kids” check out the stores.

I polish off the mini-Cadbury eggs. It’ll be a miracle if I don’t gain weight this weekend.

Sunday evening: The wind is picking up and I am getting a little concerned about the “atmospheric river” making its way toward us tomorrow. I’m going through an evacuation plan in my head. I have Robert’s meds all ready to put into a bag if needed. Important docs are all in one place which will be easy to grab if we have to leave. It’s a very remote chance but we do live in a flood zone so I need to plan for worst case scenario. It’s my specialty! J

I finish the laundry, feed the dogs and make Robert a sandwich for dinner. I have no inspiration for dinner at all! I am still full from those darn delicious Cadbury eggs so I didn’t eat.

I keep the streak alive and let Robert have ice cream again tonight! He’s not going to know what to do once we get back on the every other day schedule.

For some reason, I am very tired tonight. (Probably from my lack of good nutrition.)

I plan to watch another Best Picture winner but haven’t decided which one yet. Maybe the Godfather!

Richard texts that his leg is “in bee hive pain.” That’s no good.

Monday morning: I wake up at 5:45, probably because I stayed up so late watching The Godfather. I can’t believe I’ve never seen that movie. I am excited to watch Godfather Two!

Robert sleeps in again so I finish all the cleaning. The house is completely clean (well, except for the paw prints from the mud)!

I keep the news on to keep an eye on the approaching storm but also because the house is way too quiet.

Monday afternoon: Rach offers to go to the store for me. It’s raining outside but I am determined to take Robert out anyway. I load him in the car and he doesn’t complain at all about the rain. Probably because I promise him a chocolate shake on the way home. That’ll do it every time! I see Rach and Matt at the grocery store. How fun!

Monday evening: It’s pouring outside so I give Robert soup and salad for dinner and I eat a salad. Finally! Real food!

Monday night: Robert is in bed and I rent Godfather Two. Good grief! It’s three and half hours long?! I make it through an hour and then have to go to sleep.

Tuesday morning: Robert has program today and I have to go to work. Richard is due home later tonight. The dogs will be so lonely today without any of us!

Tuesday afternoon: I leave work early in order to be home for Robert. I make him a salad and pasta for dinner. Matt is kind enough to pick up Richard from the airport.

They get back home and Taz and Oz go crazy! They are excited to see Richard but Taz can’t get enough of Matt. Richard excitedly tells us about his trip and I know this is something both he and Christopher will always remember.

The house is full and noisy and I love it.

As for those five pounds. . . well, let’s just say I’ll try again another time.

Monday, January 16, 2017

Back to Excellent!

Actually, if you ask Robert he never left excellent. Richard and I, on the other hand, saw him go from his usual excellent self to sounding very croupy and congested to running a fever, wheezing, coughing up yukky stuff and barely able to stand.

It all happened very quickly!

Robert had a bad bout of pneumonia in the spring of 2015. We kept him home and treated him with the help (over the phone) of his wonderful pulmonary nurse, Lana. Robert was pretty darn healthy until last October when he had similar symptoms but not as severe.

That’s a really good run for him, considering a few years ago he was hospitalized two to three times a year for pneumonia!

He always has a lot of nasal and chest congestion so I am constantly on “pneumonia-watch.” We do everything we can to keep his lungs healthy – kind of like exercises for the lungs! We have an acapella device which he uses several times a day. We have an inhaler, a nebulizer machine and a humidifier. We encourage him to cough (which he hates to do and will turn red holding in a cough) and have him walk around the house with his walker to get some exercise.

Because of his seizures, he is prone to aspiration pneumonia so I also brush his teeth and take him to the dentist for teeth cleanings three or four times a year.

At his last pulmonary appointment, the doctor asked what I do to prevent aspiration pneumonia. I rattled off all of the above but forgot to mention the extra dental care which I think is probably the most substantial contributor to his reduction in pneumonia. (Typical to forget the most important point when talking to a doctor!)

Richard and I are committed to keeping Robert out of the hospital when he gets sick and his pulmonary team agrees completely. His doctor has prescribed antibiotics for him which I keep at home in case he goes downhill fast (which, of course, invariably happens over a weekend). I am reluctant to use these unless it is absolutely clear that he needs them. Robert is already resistant to several antibiotics and he doesn’t need to add any more to that list.

When Robert is sick we work closely with his pulmonary doctor and that fantastic nurse, Lana, mentioned above. Lana keeps in daily contact with me, listens to my concerns and we discuss, as a team, whether it is time to take him to the hospital. Our goal is to keep him out of the hospital but we have to be on the lookout for sepsis and septic shock which can be fatal. (I watch for a very low blood pressure, high pulse rate, extreme sleepiness and shivering.)

We cannot mess around!  

I know it sounds like I am anti-hospital but I will take Robert in to the hospital if needed. It is just that there is such a decline when he is hospitalized and it takes so long to get back to his regular baseline. Actually, I don’t know that he ever really gets back to his baseline. It’s more like he declines and recovers but only up to a new, lower baseline.

That is why we work so hard to keep him out of the hospital when possible.

Last week, Robert got sick very quickly. He sounded “froggy” for a few days and was a little grumpy at Day Program which is out of character for him. Then the fever hit, the deep, horrific cough and high pulse rate. After consulting with Lana, we put him on the antibiotics which have been known to work in the past for him. His pulmonary doctor is fairly new to Robert and after a day of being on the antibiotic that works for him decided he should be switched to another one that has not worked in the past. I agreed to try it but Lana and I discussed it and I told her I would switch him back if he didn’t improve or if he got worse.

This was Friday. By Saturday evening, he was much worse and I thought if he didn’t improve we would be going to the ER in the middle of the night.

I switched him back to his other antibiotic and checked his vitals through the night.

Thankfully, Robert’s fever went down and on Sunday he seemed better than he did on Saturday but he was still pretty sick. It took both Richard and I to stand him up and we used the transport chair to get from his bedroom to the bathroom (about 10 feet). Robert was foggy-headed and couldn’t get his legs to turn or stand straight so we ended up giving him quick baths while he sat in his shower chair.

Pneumonia is not only the worry when he’s this sick but falls are a real concern.

I worked from home Monday and Tuesday so there would be two of us moving him and getting him out of bed, to the toilet and then back in bed. Robert slept a lot!

Robert may get grumpy when the illness is starting to work on him but once it takes hold he is even more polite and sweet than normal. In fact, he woke up with the fever on Friday but Thursday evening he was extremely polite. Really polite. Richard and I looked at each other and said, “This is not good.”

Sure, we like him to be polite but when his politeness goes to another level we know we are in trouble!

When he was sick and lying in bed and I was taking his vitals, Taz was snuggled next to him in bed. Robert started petting Taz’s head and telling him he was such a good boy and then said, “I love you very much, Taz.”

Ha! We have come a long way from Robert being irritated with Taz and shouting “he is touching me!!”  

We had several days of letting Robert sleep, using the oxygen on him, letting him eat in bed (Taz had to leave for that part) and taking vitals every few hours. By Monday, we got him to the table to eat so he was sitting up and moving around a little. We needed to break up all the junk in his chest.

Robert has had sepsis before and has even been in septic shock. I suppose I shouldn’t be surprised that he miraculously survived every time. The man is a walking a miracle, after all. Because of this experience and subsequent research, I know that mental confusion and low urine output are also signs of sepsis. However, I am also aware these are signs of dehydration as well.

By Tuesday, he couldn’t sit up on the toilet and was leaning either far forward or far to the left. We had to literally hold his body up so he wouldn’t fall over. His briefs weren’t nearly as wet as usual and he was confused – not knowing his basic routine or understanding simple directions.

Is it sepsis or is he dehydrated? I called Lana and we talked. Richard and I talked. We were all concerned. Lana talked to the doctor who advised we should take him to the hospital.

I waited it out for a few hours and pushed a lot of fluids in him. He isn’t supposed to use straws because of his swallow disorder but he could barely hold a glass so we used a straw (you just have to do what you have to do sometimes!).

Thankfully, he improved as the day progressed. He continued to improve through the week but was pretty weak and still a fall risk. I was able to go to work on Wednesday and Richard stayed home with Robert. Richard has his own leg infection he’s dealing with so had a couple of appointments he couldn’t miss. I am very grateful we moved closer to work because it allowed me to drive back and forth the rest of the week.

I actually have a lot to be grateful for!

First and foremost: Richard. If Richard and I were not both able to care for Robert, he would have had to go to the hospital – no question. There is no way either one of us – alone – could physically assist a 220 lb. guy with standing or transferring to his bed.

Next up: Lana, the pulmonary nurse and case manager extraordinaire! Without her care for Robert and confidence in me, as the caregiver, Robert would have been in the hospital.

Honorable mentions: Our daughter, Rachel, who is a wonderful emotional support and knows how to give us some comic relief! My best friend, Joelle, who runs interference at work when I am not in the office all while handling her own challenging job. Richard’s mom who calls to check on Robert and who fervently prays for him to get better. Our fellow caregiving friends who check in on us daily to see how we are and how Robert is doing. In fact, one even sent us a Prayer Angel a while back which we have been using for both Robert and Richard!

I am also grateful for an employer who allows me the flexibility to work from home when it is absolutely necessary. Although, I did realize that I would much rather work from home all the time! I mean, it’s very hard to compete with a home office that comes with Puppy hanging out with me and sleeping on the office couch.

Lastly, I am grateful for Robert. He is a good patient, even when I am frustrated he can’t respond to my directions. He keeps his joking attitude even when my brow is furrowed with worry and I can’t laugh along with him.

There will come a time when he will have to go the hospital and I will be okay with that. I absolutely know that Richard and I have done our very best. We definitely gave this round our all and if this bout of pneumonia is not completely gone then he will have to go to the hospital.

For now, though, after 10 days of Robert being sick I am prepared to say he is pretty much back to normal – okay, let’s say excellent. Robert says he is doing “excellently great” and the plan is to resume our usual schedule in the morning and send him back to Day Program.


Fingers (and toes) crossed!