Robert’s Excellent Christmas Spirit

Richard and I were talking recently about Robert and marveling at how he has lived with us for almost four years! When I first started caring for Robert it involved intervening when he had a serious infection and overseeing his care in the hospital, a Skilled Nursing Facility and an Assisted Living Facility.

Carol, Robert and Trish at the Kreis Christmas

At the risk of repeating myself, it never occurred to me that Robert would eventually live with us! I always thought that was either not needed or impossible for me to manage.

As it has turned out, it was both needed and possible.

While Richard and I marveled at this turn of events we also noted that Robert no longer has his angry outbursts either at home or at program. At the various facilities, Robert would act out by yelling or flailing his arm to stop someone from either helping or bothering him. There were the “recliner” episodes at his previous Day Program because there were a lot of people wanting to sit in the most comfortable recliner and, well, only one comfortable recliner.

Neither one of us could remember the last time Robert had an outburst. He has settled into a comfortable routine at home, enjoying his own bedroom and bathroom and not having to fend off other clients taking his stuff. Robert enjoys meals with family and can count on Rocky Road ice cream at least every other night. (Hey, I have to set some limits!)

Robert's Christmas card to Richard

Robert plays ball with the dogs, jokes with Richard and politely asks me how my day was immediately upon my return from work. It’s been months since paramedics have been called to our house and a couple of years since an overnight hospitalization.

I don’t want to boast but it seems living with us has been good for both his mental and physical well-being!

Having Robert live with us has been good for us as well. Richard feels caring for Robert gives him a purpose. Due to Richard’s back pain (and now vascular issues in his legs) he cannot have a “regular” job. However, Richard manages the household and cares for Robert when he gets home from program. They’ve developed a fond, brotherly relationship that is evident in their banter and which brings joy to my heart (when they are not driving me nuts with their silly jokes and teasing.)

This Christmas season has highlighted Robert’s fantastic attitude for me even more than usual and it delights me to share him with others. While caring for him is expensive, stressful and exhausting it is an experience that has enriched my life more than I could have imagined. Not just because of how his attitude directly impacts me and Richard but because I have seen the kids move from seeing Uncle Robert a few times a year when they were growing up and only having a vague understanding of his disability to developing a deeper understanding of what caregiving and being disabled is all about.

Robert's version of picking a Christmas tree

Heck, I’ve seen that in myself!

Robert loves to be involved in all the extended family activities and is content as long as there is food involved. Robert is game to getting a Christmas tree and going to family parties but his word search book is always close at hand.

Robert and his friends at Day Program also participate in an event each year to help raise money for the Make a Wish foundation. All they have to do is write a letter to Santa and then the letters are dropped into a special mailbox and Macy’s makes a donation to the Make a Wish program. The letters range from “Dear Santa, I would like a million dollars” to “Dear Santa, I would like a gift.”

Robert's letter to Santa

Robert and his friends may be disabled but they are kind enough to participate in an activity to help someone else. If that isn’t the spirit of Christmas, I don’t know what is.

Christmas may be over but what I have realized is that Robert has Christmas spirit all year long. I am grateful I didn’t listen to that voice in my head that said caring for Robert would be impossible. It is not only possible but it turns out that it was actually a gift.

Wishing everyone a year of gifts in unexpected places and lots of “excellent” Christmas spirit!

Robert enjoying his Christmas Day gifts and family

Epilepsy Awareness Month: Grateful and Inspired

November is the “official” Epilepsy Awareness Month but epilepsy and seizures and caregiving don’t stop just because it is December. People live it every day, every month, every year.

Every moment.

The people I was able to interview this year know what I am talking about. These people have epilepsy or care for someone with epilepsy and somehow find time to also advocate and educate others. They still have time to follow their dreams, go to college, get advanced degrees and continue to live their lives day in, day out.

Epilepsy does not stop these people. There may be stigma and lack of awareness about epilepsy or what to do when witnessing a seizure but people who have epilepsy in their life don’t let that hold them back.

These people have grit!

I absolutely loved following up with the people I interviewed in November 2012. These people and their stories of resilience, persistence and tenacity are as inspiring as anyone could be.

I also was delighted to interview people I missed the first time around! These people are just as resilient, strong and persistent in their fight against epilepsy. (And, heads up, you know I’ll email you for a follow-up interview in four years). J 

My heart hurt to read the struggles that so many people face with epilepsy but I was also overcome with emotion when these same people persevered through terrible obstacles.

I was so inspired by these people who think of others, are kind and who do not give up. Ever.

Below is a brief recap of these exceptional people. Please click on their name to read their full interview.

Cathi Shaw, author and mom, has found that delicate balance of caring for her daughter who has epilepsy without being overprotective and is, in fact, extraordinarily supportive. Cathi has watched her daughter struggle with reactions to medications, start her own non-profit and win the Terry Fox Humanitarian Award.

Michelle Reichartz was first interviewed in 2012 and she has since moved to be closer to family, got her Master’s Degree and plans to pursue her Ph.D.! Epilepsy definitely does not stop this woman from following her dreams and finding success along the way.

Tiffany Kairos is a strong, relentless advocate for those with epilepsy. She educates others, shares her personal story and was nominated for the WEGO Health Awards, Best in Show: Twitter – which she won! Congratulations, Tiffany! Oh yeah, she’s also a badass.

How many people start a non-profit to help support families with children who suffer from epilepsy? There are several. How many do so without personally having a child with epilepsy? Probably one: Susan Noble. Susan and her foundation, Epilepsy Warriors, are doing great work for families with a child who has epilepsy.

Eileen Murray’s story struck a chord with readers. She cares for her son, Will, who at 23 years old has had epilepsy most of his life. They have tried numerous treatments for Will which is all too common of an experience for families. Will is a gentle soul with a fantastic sense of humor and, as Eileen shares in one of her stories, a heartwarming empathetic side.

The absolute brutal side of epilepsy is shared in painful detail by Christy Shake. Christy was interviewed in 2012 and she graciously gives us an update on treatments and progress over the last four years. Her personal blog, Calvin’s Story, is a must-read.

Teresa Stallone not only has epilepsy herself but cares for her mom who also has epilepsy. We followed up with Teresa from 2012 and do you know what her favorite moment has been these last few years? Finding a compassionate dentist and getting much needed dental work done. (Do not even get me started at the lack of adequate dental care for those who cannot afford it yet need it most. Anti-seizure medications can do horrible damage to teeth and general oral health.)

Sometimes epilepsy takes away our loved one, too. While epilepsy was just one piece of a whole host of issues that Mike and Lorraine Kimball’s son Mikie had, his health did not define who he was – or who they are. Mike and Lorraine are devoted parents and gave Mikie lots of love and protection in his 43 years here.

Then there is Connor Doran who has inspired me since I first saw him on America’s Got Talent. Connor continues to follow his dreams in spite of his epilepsy and the medication and epilepsy induced side-effects and has graduated with an AA, found the love of his life and was recently accepted to the University of Puget Sound (he had his fingers crossed for such a positive outcome when we interviewed him.) Congratulations, Connor!

Leslie Hammer’s story is one that rips my heart apart. She has overcome so many obstacles and sometimes that means just moving one foot in front of the other. But she does it and she does it every single day. Epilepsy needs a cure so Leslie and people like her can just be given a break.

Amy Schlenker has had to make some very difficult decisions in order to get her daughter, Paige, the treatment she needed to control her epilepsy. Can you imagine having to put your eight year old through her third brain surgery? And this one was a complete right modified functional Hemispherectomy! But it worked! I am not really in charge of these things but I hereby declare Amy Schlenker Mother of the Year!

Of course, I had to interview my brother, Robert Wright. I was just today having a conversation about Robert and his “excellent” attitude. Robert has somehow managed to live in the moment and to be content and happy with simple things. He also stays optimistic and is convinced when I interview him again in four years that “Probably I’ll get healed completely.” His faith is unwavering and he inspires me every day. I still have a lot to learn from him.

I also interviewed my husband and co-caregiver extraordinaire. 

Richard Kreis is just what Robert needs: a fellow jokester and Mr. Fix-It. I am delighted every day when I hear the two of them laughing and joking around. It drives me nuts sometimes when I’m trying to get a word in edgewise or talk about something serious but I couldn’t care for Robert without Richard. Plus, he’s a relentless advocate for caregivers!

Laurie Adamkiewicz is another mom who deserves Mother of the Year (for several years running now). Since I’m not really in charge of that award, I think it’s okay to give it away to several people. Laurie takes care of her son Kyle and has seen him and their family through some very difficult times. She was happily caring for two sons when one, at age six, started having seizures and ended up having up to 100 a day. That is life-changing. Laurie is a devoted mom and strong advocate and also a very talented photographer. Check out her website!

My last interview was with me (which is quite a trick!). I mainly wanted to answer the same questions I asked of others and to share how Robert has changed in the last four years. There has been a significant decline in his health but Robert lives with us now and it has been the best possible solution for all of us.

I am extremely grateful to have been a part of these interviews and to share these amazing people with you.

If you ever need a reminder of some of the inspiring people in this world, please re-read these stories and know that if you have epilepsy, you are not alone. If you care for someone with epilepsy, you are not alone. If you advocate for those with epilepsy, you are not alone.

Please share their stories so others know they are not alone.

Let’s change how people think about epilepsy and let’s do this together.

Epilepsy Awareness Month: Follow-up Interview with Trish

Boy is it ever hard to interview yourself! J

I did it four years ago and wanted to participate again this year in the follow-up interviews. Four years ago I posted one interview every day during the month of November for Epilepsy Awareness Month and wanted to do the same this year with a mix of new interviews and follow-up interviews.

Trish, Robert and Richard
(left to right)

I didn't quite manage to do one per day during the month of November this year but am going to cut myself some slack and not feel too bad about it (and, as you may have noticed, it's December and we still have an interview or two!). 

My hope is we can run more interviews throughout the year. After all, we need to keep talking about epilepsy year-round! 

Let’s get straight to the questions:

Robert’s Sister: I am curious what changes have occurred in the last four years. Please remind us how epilepsy has affected your life.

Robert has had uncontrolled epilepsy his entire life. He has complex partial seizures. He also has been diagnosed with Dysphagia (a swallow disorder), Parkinsonism (a movement disorder) and Restrictive Lung Disease making him prone to pneumonia.

Robert’s Sister: What is the most significant change in your life since our last interview?

Robert moved in with me and Richard at the end of March 2013. It’s hard to believe it’s been three and a half years! Also, in June 2015 we moved from our two-story house to a one story house with a bedroom and bathroom (and tub!) for Robert.

When Robert first moved in with us, there was only one bathroom downstairs and it didn’t have a tub or shower. Robert’s “room” was our living room and we transformed it into his bedroom every night. It was quite an operation giving him daily baths in a small bathroom without a tub! Robert sat on a shower chair and we used a bucket, the sink and a lot of towels. No one would have guessed he didn’t have a “real” bath every day, though.

Robert loves having his own room now and bathing him is so much easier. We wouldn’t have been able to make the move when we did without the help of our Other Brother and we are all very grateful to him for his help.

Robert’s Sister: Has the treatment changed for you or your loved one?

Over the last few years Robert has tried a few different medications and current medication dosage has changed a bit. Unfortunately, nothing has helped and Robert continues to have dozens of seizures every month. His seizures come mainly in clusters every couple of weeks with one or two seizures breaking through between the clusters. I don’t know why his seizures behave this way but this is what happens now.

A few medications that Robert tried caused behavior problems so he either had to stop them completely or be on a very low dose of them. Trileptal (Oxcarbazepine) caused Robert to be in a terrible mood all the time which, as most people know, is very unusual for him. It helped reduce his seizures but the price was too high. He was angry and upset more often than not and we gave it a good try. He is on a low dose of it which seems to help some without the nasty side-effects.

Robert also takes Sinemet now because of a movement disorder diagnosis a few years ago. This does help him with his Parkinsonism (not Parkinson’s disease) symptoms.

Fycompa was added in 2015 which also seemed to help but Robert ended up in the emergency room from it. As we eventually figured out, this was causing compulsive masturbation and he was literally not getting any sleep. It affected his behavior at all times during the day and also caused severe enough edema we thought he had a blood-clot or pneumonia. It was a horrible experience which, thankfully, we figured out within a few weeks. The medication was fairly new to the market at the time Robert tried it and there hadn’t been reports of these side-effects. Robert’s nurse practitioner reported the side-effects to the FDA since they were so severe.

2016 trip to
Epilepsy Awareness Day at Disneyland

Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

How much time do you have? J

Robert has had significant physical changes in the last four years. All the new diagnoses come with additional tasks to help manage his care. Robert has had urinary incontinence since I started caring for him but he now also has bowel incontinence at times as well. That’s a tough one for me.

Robert uses a wheelchair at Day Program and when we go out but we have him use the walker around the house. He still has to eat while in his wheelchair since he’s been known to have a seizure while eating using a regular chair and then fall sideways out of it.

Robert’s nurse practitioner and I suspect Robert may also have Chronic Traumatic Encephalomyelopathy (CTEM), caused from his uncontrolled seizures and numerous concussions from falls and seizures. CTE and CTEM cannot be diagnosed until after death but with his declining motor function, decreased memory and history of depression and behavioral issues when he was younger, it is a strong possibility.

Since moving in with me and Richard, Robert has fewer angry outbursts and is very happy. His new favorite phrase is that he is doing “excellently great!”

Robert’s Sister: What caregiving help do you use?

Richard and I get IHSS hours to use for Robert but have not hired an outside caregiver. Robert is a client of the Alta Regional Center and he gets his Easter Seals Day Program funded through that as well as transportation to and from the program. With Robert’s increasing physical needs, he moved to a different program with more staff members. Robert loves it and we are very happy with it. The people are absolutely fantastic and they care greatly for Robert.

Richard and I are also eligible for 14 days of respite per year through the Alta Regional Center but, unfortunately, there are not enough care facilities available for people needing as much care as Robert. We have not had overnight respite in a very long time so we will occasionally make our own respite. When we need a break, we declare a weekend a “respite” weekend and I take a Friday off to spend with Richard while Robert goes to Day Program. Our daughter, Rachel, and her fiancé, Matt, have stayed with Robert in the evening while Richard and I go to dinner.

These are the bits of help that we are grateful for and which help keep us going!    

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?  

Our life with epilepsy has definitely improved since Robert moved in and since we moved to a one-story house. Not because the epilepsy has gone away but because it makes it much easier to care for Robert. I am much happier having him live with us so I can make sure he is getting the best possible care than when he lived in care facilities that were not a good fit for him.

However, it is very expensive being a caregiver! Robert needs quite a few over the counter medications to help manage congestion so it doesn't get out of control and lead to pneumonia. We also purchase better quality briefs than he gets from the state every month. We buy him velcro close clothes so he's able to dress and undress himself to some extent. We also found that taking him to the dentist several times a year for cleaning and various dental work keeps pneumonia at bay! Expensive but worth it. 

Robert and Puppy (Taz)

Robert’s Sister: What has been your favorite moment these last four years? 

There have been so many! All involve family or friends. Rachel and Matt got engaged; Richard and I, along with three of our caregiving friends, published a couple of books and started a website to help caregivers with practical caregiving tips; Robert moved in; Robert has developed a wonderful relationship with our dogs and even has come to love the crazy puppy; we moved to our one-story house which helps both Richard and Robert.

I have so much to be grateful for.

Robert’s Sister: What do you see for yourself or your loved one in the next four years?

Oh boy, this is a hard one. Robert’s health is such a “house of cards” I wonder if he will be around in four years. That may seem morbid but that unknown makes me more focused on the present and making sure Robert is able to eke every bit of life out of the time he does have.

Two and a half years ago Robert’s pulmonologist said Robert would most likely live only one to five more years. Of course, Robert has come back from so many near-death experiences I kind of take that prediction with a grain of salt. For all I know, Robert may outlive all of us with as many miracles as he can pull off.

I hope we are able to continue to do fun things like go to the State Fair and the movies and River Boat cruises and Epilepsy Awareness Day at Disneyland.

I really hope we are able to continue to care for Robert at home. I just don’t know if that will be possible since Richard has his own health and chronic pain issues and I have to make sure his health doesn’t deteriorate because of the physical care he is providing Robert.

We have to take things day by day and re-evaluate as needed.

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

I am very grateful to Robert’s team of doctors, the staff at his Day Program as well as the drivers who take him to program and bring him back home. It may be physically difficult and emotionally tiring to care for Robert and work full-time but I am a much better person because of it.

I want to continue to advocate for an expanded definition of family under FMLA so that sibling care is included and would love to see more research done on the connection between uncontrolled seizures and CTE/CTEM. CTE is not a disease that just football players get. I firmly believe CTE is a real threat to those with uncontrolled epilepsy as well. More research is critical.

Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business.

I am very happy to help other caregivers and the best way I have found to do so is with my fellow authors in creating our 365 Caregiving Tips books. We have two books so far as well as a 2017 calendar which includes the gorgeous art of Pegi Foulkrod as well as practical tips taken from our books. More books will be out in 2017!

Please follow my Robert’s Sister Facebook page, the 365 Caregiving Tips Facebook page or website and find me on Twitter here and here.

Of course, I am very passionate about helping others tell their stories of living with epilepsy or caring for someone with epilepsy. I would love to run interviews throughout the year so please let me know if you are interested!

Thank you so much for reading and sharing these stories of people living with epilepsy!

Trish