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