Epilepsy Awareness Month Day 30: Q & A with Robert and Trish (Part 2)

It is the last day of Epilepsy Awareness Month!  I have learned so much from Robert this month and hope we helped others learn about epilepsy and about Robert. 

I am very grateful to everyone for watching the videos, reading the posts and supporting all of us in our mission to raise awareness not just about epilepsy but about the long-term effects of uncontrolled seizures. Robert, Richard and I greatly appreciate your support.

The last few questions were all for Robert and he took his job of answering them very seriously. (Of course, there were laughs and dogs thrown in as well.)

Question from Rachel: If you didn’t have epilepsy, what job would you want to have?

Robert thought about this and decided he wanted to work in an office but not in insurance sales (sorry, Dad).  Robert thinks he would have worked with numbers, like Other Brother.

Question from Rich:  What does it feel like to have a seizure? 

Robert talked more about the aura he feels before a seizure and how he is sometimes able to “fight them off.”  I have no doubt Robert has the strength to do this!

Question from Rich: What would you have done with your life if you didn’t have epilepsy?

Robert thinks he would like to read the bible more. He also mentioned wanting a book from Dr. Charles Stanley (a church program he watches every Sunday).  I guess I know what someone is getting for Christmas!

Question from Pegi:  How do you manage to stay excellent most of the time with all of your challenges? What advice would you give to other chronically ill people on how to maintain such a positive attitude?

Robert’s answers to both of these questions should surprise absolutely no one.  Prayer is what helps Robert and is what he recommends others do as well.  (Robert probably should have been a pastor!)

Question from Richard: How do you do fight off a seizure? 

Robert’s answer – he uses his strength and prays. 

Yep, Pastor Robert has a very good ring to it. 

Thank you again for watching, reading and supporting us this month. I hope we accomplished the goal of explaining the impact epilepsy has had on Robert.  It has been significant but it definitely has not been all bad as one might have expected. 

Special thanks to Robert for sharing his life with us.

Epilepsy Awareness Month may end today but our mission continues.  Please help us spread epilepsy awareness and education by sharing these videos and talking about epilepsy.

Thank you!   

Epilepsy Awareness Month Day 29: Q & A with Robert and Trish (Part 1)

Robert and I are answering questions for the last two days of Epilepsy Awareness Month. I was worried before starting this project that Robert would tire of doing all these videos but he is enjoying every minute of it!  (I should have realized what a ham he is!)

We had great questions which Robert and I answer on the video.  Thank you for submitting the questions! The questions and a brief summary of our answers are below. 

Question from Elissa:  Has your recent stay in the nursing facility taught you new things about epilepsy? If so, what? PS: Thank You (and Trish!) for your outreach and education! It's awesome that you're both doing this.

Answer: Robert answered this question and talked about how the nursing facility helped him to walk better. So true! Robert’s mobility has significantly declined and the physical therapy given to him in the SNF was a huge help.

Question from Teresa: What has dealing with epilepsy taught you?

Answer: Robert gives a terrific answer to this question. (He usually surprises me with his answers and this was no different.)  Robert said he has learned to live day to day and to pray for no more seizures.

Question from G-J:  What information would you give a newly diagnosed young adult and their family?

Answer: I fielded this question and want to list the resources here that I discuss in the video. I also stress that it is important to learn as much as possible about the type of seizure a person has and the medications the person with epilepsy starts taking. I would refer someone newly diagnosed to several epilepsy organizations.

For education and resources:

The Epilepsy Foundation

CURE Epilepsy

For support:

Chelsea Hutchison Foundation. Provides help and support to families dealing with epilepsy. They are particularly focused on teens and young adults.

Danny Did Foundation. This organization works to raise awareness about SUDEP.

Especially for teens:

The Epilepsy Squad.  This group is near and dear to my heart.  They are a youth initiative working to decrease the stigma of epilepsy. You have never met more DETERMINED young adults.

Question from me:  Does it hurt when you have a seizure?

Answer: Robert answers that it does not hurt when he has a seizure. (Some people do experience pain during a seizure and some cry out during a seizure making it sound as if they are in pain. I am relieved to learn Robert does not experience pain – I wondered about that recently when he made noises as if he was in pain during a recent seizure.)

Question from me: Tell us about your helmet.

Answer: Robert demonstrates putting on his helmet and talks about why he uses it.

Question from Richard:  What do you do when someone has a seizure? 

Answer: I answered this question first, using the information from The Epilepsy Foundation as a guide. Safety is critical. Do NOT put anything in the mouth – ever! Robert added that he likes it when we tell him what happened during a seizure.  This was great information from Robert and something I hadn’t thought of before. Of course, I knew the neurologist needs to know what happens but it didn’t occur to me that Robert was curious about it.  (It seems obvious now that he says it, though.)

If anyone has more questions or a message for Robert, please leave them in the comment section.  Part 2 will run on the last day of Epilepsy Awareness Month! 

Thank you for your support in spreading epilepsy awareness and education!

Epilepsy Awareness Month Day 28: Brotherly Love

My first memory, as impossible as it seems, is of my brand new baby brother being carried through the back door of our two-bedroom, white house in Omaha.  We moved out of that house when I was entering the first grade and we forever after referred to that house as “the White House.”

I could not believe my parents were bringing me – at two years old – a real, live doll of my own to play with and care for and love.  Mom later told me she would wake up in the morning to find me in the new baby’s crib playing “mom.”  I fed him, held him and played with him for hours on end.

This was Other Brother’s arrival into the world, not Robert’s.

Robert arrived a few years later and even though I was five years old at the time and probably should remember another new bundle of joy being brought into the house, I have no recollection of it in the least.  Robert’s entrance into the world was memorable for Mom, however – he broke her tailbone.  The doctor also actually used forceps to help deliver Robert (yeah, I can’t believe that is an actual tool sometimes used during childbirth).

Robert literally came into the world kicking and screaming. (I’m pretty sure Mom was too).

Ever since finding out how traumatic Robert’s birth must have been, I wondered if that somehow contributed (or caused) his epilepsy.

Despite this rocky start and subsequent years of our young parents doing their best even while they battled depression, Bipolar disorder, substance abuse and Robert’s epilepsy, I remember a happy childhood.

Much of that was because of these two guys.

A goofy moment between brothers

Maybe it was because of everything happening in our household that Other Brother and I forged a strong bond that remains to this day. I wasn’t always close to Robert but that changed once I took over his care. 

I know that Other Brother is someone I can count on for support not only for me but also for Robert.  I know that when the three of us are together there is laughter and love and an appreciation of our time together.  We don’t really know what the future holds for Robert, particularly with his decline and increased seizures, but we don’t dwell on that when we’re together.  (We might joke about it with each other in a sick, morbid humor kind of way but definitely don’t dwell on it.)

We have never really known what the future held for Robert but this uncertainty (and the chaos of a crazy family) taught us to enjoy what we have right now and not to take ourselves too very seriously. 

I cherish the laughter and joking and love when the three of us are together and know that this strong bond was borne out of adversity (including epilepsy). I also know that it remains even when we are not in the same room together.  

My wish for everyone with epilepsy is that they have family or friends that are just as supportive and who will always be there for them.  Adversity is best traveled together and I am fortunate to have my two brothers always by my side.

Other Brother and Robert aren’t known for their sap and mushy ways (they leave that to me, obviously) but I think I detected a “moment” between them during the interview.

Maybe my sappy ways are rubbing off on them!

Epilepsy Awareness Month Day 27: Gratitude

Today is a day for gratitude! Richard, Robert and I share what we are grateful for and wish everyone a very Happy Thanksgiving!

One impact epilepsy has had on Robert is that it has made our family that much closer.  For that, we are all grateful.

We have much to be grateful for! 

Wishing everyone a wonderful day and a year full of blessings.

Happy Thanksgiving!

Epilepsy Awareness Month Day 26: Epilepsy Rant

I am usually a positive person but today has been especially trying. I realize tomorrow is Thanksgiving and I should be espousing everything I am grateful for.  I will. 

Just not today. 

Today I am on a rant. 

Epilepsy sucks.  It is more insidious than people realize.  People who have seizures lose minutes, hours, and days of their life.

Epilepsy has no regard for schedule. Does it care tomorrow is Thanksgiving?  Absolutely not.

Epilepsy changes without warning.  I am used to Robert’s Complex Partial Seizures. He averages 20 – 25 seizures a month. This month, his seizures are out of control.  He has had not one but two days of non-stop cluster seizures (totaling at least two dozen each day).

When it happened earlier this month, we thought maybe he was super excited about our trip to Disneyland.  We (meaning me and his neurologist) couldn’t figure out any other reason for the unusual cluster. I chalked it up as anomaly.

Then it happened again – three weeks later. 

Are his seizures changing?  Are we moving from one or two every few days with an occasional cluster of 3 – 4 to a few dozen in a day? Will this become the norm? 

Who knows!  Because epilepsy is unpredictable and in a third of people with epilepsy it is never controlled.  Never.

Epilepsy kills. Yes, it kills.  Fifty thousand people die annually in the United States from epilepsy (prolonged seizures, SUDEP, and accidents caused from seizures).

50,000!

Epilepsy changes lives. A woman – a kind, wonderful woman – loses her daughter and mother to seizures. A mom takes a low-paying job because it allows the flexibility to support her son who has epilepsy follow his dreams. A mom advocates for the legal use of CBD after seeing her son’s epilepsy continue to be uncontrolled. A man and his wife care for their disabled son and have sat bedside with him numerous times when he was on the brink of death. A confident, empowered woman becomes self-conscience because the of damage epilepsy medications have done to her teeth.

Let's do more research to find a cure for epilepsy.  Let's do more advocacy.

Let's do more ranting. 

Epilepsy Awareness Month Day 25: Epilepsy and Dental Care

Anti-epilepsy medications can ruin a person’s teeth. 

Robert is very comfortable at the dentist

Robert has always been good about brushing his teeth but when he lived independently he didn’t regularly see a dentist.  As we found out this year, the dentist he did see actually did not do very good work (root canals were not properly done, for instance). 

When I took over Robert’s care and he lived in a care facility, he was eligible for regular dental cleanings and check-ups as well as a deep cleaning under general anesthesia.  This made me very nervous and I agreed to it once.  At that time, the dentist said his teeth were in good shape and Robert didn’t need any work done. 

Side rant: How much sense does it make that Robert was eligible for four cleanings per year as well as the deep cleaning every two years yet is not eligible for that while living with me?  I am a reasonable person and would love to know the thinking behind that “logic.”

Anyway, two years later I took Robert to a dental group that supposedly took Medicaid and who proceeded to tell me Robert needed twenty thousand dollars in dental work.  Not only that but the dentist did a cursory cleaning on Robert (which hurt him) and made disparaging comments about him while doing it. 

I filed a complaint and got our money back (Medicaid did not pay for the services contrary to what this company said). I then took Robert to my own dentist.

Robert needed work done but it was not even close to $20,000 worth! The x-rays done showed previous work and the dentist pointed out the improperly done root canals.  Over the course of a few months, Robert underwent a lot of dental work (fillings, crowns and deep cleanings) and I took over brushing his teeth. 

Robert has difficulty keeping his teeth as clean as they should be because of his dexterity issues. After Robert’s summer of hospitalizations and SNFs, we have not gotten back into the routine of me brushing his teeth. 

It showed at the cleaning visit today. 

Keeping Robert’s teeth clean is not just a matter of vanity. Robert is prone to pneumonia and one huge, contributing factor is the bacteria living in his mouth and then traveling to his lungs.  Good oral health helps with good overall health. 

During Epilepsy Awareness Month in 2012, I interviewed Teresa Stallone who also has felt the impact of anti-epilepsy medications on her dental health. Because dental care is rarely covered by Medicare or Medicaid, essential dental work is often placed on the back-burner.  As Teresa said, after developing a life-threatening infection due to severe periodontal disease, “I am experiencing major health consequences as a result, including more breakthrough seizures thanks to medication to ease relentless pain.”

This absolutely should not be tolerated. Dental care is as essential as medical care yet it seems insurance (whether federally or state funded or otherwise) has not caught up to this fact.

People living with epilepsy need to be particularly diligent with their oral hygiene and health. Those caring for someone with epilepsy can help with this task with reminders, visits to the dentist or even helping to brush.  We can also help advocate for better dental coverage and for the awareness of the need for great oral health. 

In the video today, Robert talks about going to the dentist and I stress the importance of good oral health. 

The puppy also demands some camera time!

Epilepsy Awareness Month Day 24: Mood and Medications

Robert is generally very polite, sweet and overall in an excellent mood.  It might be physically difficult to care for him but it is not emotionally difficult when he is cooperative, joking around and full of laughter. 

Robert playing ball with the dogs

When Robert (or any caree for that matter) is cranky, caregiving becomes one hundred times more difficult.  It takes so much extra energy to convince Robert to cooperate when helping him dress when he doesn’t want the help (but needs it) or for him to be sensitive to the bath water and complain about it being too hot or too cold (or both) no matter what I do and to even be yelled at when I am trying to help him walk safely.

Robert gets cranky when he has a reaction to medications (which can happen with many anti-epilepsy medications as well as other medications such as pain meds).  He also got very irritable earlier this year when not only was his medication being changed but he was losing his ability to walk.

I can only imagine how scary and frustrating this is for anyone but for someone with a slight cognitive impairment, it must be especially frightening. 

Anti-epilepsy medications can have many side-effects but, of course, not everyone is affected in the same way or for the same length of time.  When Robert was younger, he was on Tegretol and Phenobarbital (and lots of other medications – he may have tried them all). He has been on Depakote and Klonopin for as long as I can remember.  Robert definitely had depression, anger and impulse control issues as a teen and young adult.  The new medication he was put on earlier this year is at a very low dose because he just couldn’t tolerate any more of it.

The Epilepsy Foundation has a terrific list of anti-epileptic medications with the side-effects associated with it. Unfortunately, many times trying a new medication can be a difficult and time-consuming process that in itself can be frustrating.    

When these nasty side-effects show up, it makes caregiving that much more difficult. The caregiver not only has to deal with a cranky caree but has to figure out if the mood change is due to the medication or something else happening to the caree or a change in the environment. For instance, even a dramatic change such as a new Day Program or a simple change in schedule can affect a sensitive caree – especially those driven by routine.

It is important to bring any attitude and mood changes to the attention of the caree’s physician in case there is something new going on or in case medication can be adjusted. 

We were very fortunate that with a few medication changes and intensive physical therapy, Robert got his “excellent” back.  He still has his irritable moments but I am grateful he is generally in a good mood again.  I realize the solution isn’t always that easy or even, possible.

Although, now that I think about it, the solution for Robert wasn’t that easy – it was a long and difficult summer getting him well.

I am definitely grateful for his return to excellent but know that there will be difficult, cranky times as well.  The most important thing I learned this summer is that we can – and will – get through any difficult period.   

Epilepsy Awareness Month Day 23: Spreadsheets, Spreadsheets and More Spreadsheets

Being organized gives me a sense of relief and peace.  I can breathe a little easier when I know the briefs are in the same cabinet as they were last week and the extra toothpaste is on a shelf that I can direct Richard to when Robert is asking for more.

Sample One Page Info/Distribution Sheet 

I feel confident when handing a seizure log to Robert’s neurologist and we can have a discussion about his increased seizures and what it means. The most recent revelation has been that Robert’s seizures increase in the fall/winter and that this is an actual “thing.” 

It may sound crazy but spreadsheets make me happy.

Excel is my preferred program for creating spreadsheets because it is easy to update and several worksheets can be created within the same document. For instance, I keep a distribution sheet for Robert which is the first one discussed in the video and the one that has all of Robert’s pertinent information on it. This distribution sheet is just one page of a several page Excel file that also includes a page for prior medications, all physicians and specialists, prior physicians and specialists as well as a few other pages of information.

Richard also has a distribution sheet for his mom and for himself. I keep several copies of Robert’s spreadsheet in my purse and at the house in the event we need a copy to give paramedics or emergency room personnel. 

Other spreadsheets I keep for Robert include a vitals log and an “all symptoms” log.  While I know I can’t control whether Robert gets pneumonia and sepsis, I can keep track of his vitals on a daily (or more frequent) basis. Because I take his vitals daily and at generally the same time each day, I know his baseline.  When his blood pressure drops or his pulse is super high then I am extra vigilant (and increase the number of times I take his vitals).  The goal is to catch an illness before it gets out of control.

The real goal is to keep Robert out of the hospital!

I am happy to share sample spreadsheets if these would be helpful in your caregiving situation. I am a big believer in efficiency and there is no reason to recreate something unnecessarily. The samples could very simply be revised to fit your own situation. Please leave a comment if you would like a copy of any of these spreadsheets.

Good luck with keeping organized and enjoy your spreadsheets!  I hope they make you as happy as they do me. (Yep, still sounds crazy.)

Thanks for watching and helping to spread epilepsy awareness!

Epilepsy Awareness Month Day 22: Tips for a Successful Respite

Confession: I am much better about talking about tips for a successful respite than I am about actually taking respite for myself!

A pedicure and a new pair of shoes -
my favorite form of self-care

It has been a while since Richard and I had a weekend for just the two of us so I planned an overnight visit away for Robert.  I contacted the facility we have used in the past and there was some concern about Robert’s past difficult behavior and the fact he now uses a wheelchair. 

Robert’s medications have been changed since his last visit and his mobility isn’t great but he can transfer which was their concern.  I suggested I bring him for the day to start since it had been several months since Robert had visited.  The director agreed that would be a good plan and assured me Robert was very welcome but his staff wouldn’t be able to care for Robert if he couldn’t transfer from a chair.  I assured him that he could do that and can even use a walker for short distances. I also reiterated that Robert's behavior was much improved since his medications were changed. 

So my plans for a weekend respite turned into seven hours.  Plus, not only did I have less of a break, I had to pay out of pocket for the afternoon.  Robert’s regional center will pay for overnight visits but not day visits. 

Planning a weekend respite included running errands, doing chores around the house and partaking in a bit of self-care – maybe a massage or manicure. 

Guess what went out the window with the “weekend" respite?

I told you I am better about advising people to take respite and taking advantage of self-care than I am about actually doing it!

These few tips are as much for me as they are for other caregivers.

Find out if your caree qualifies for paid respite.  For example, Robert qualifies for respite because he is a client of the local Regional Center. Other caregivers receive respite care benefits through the Veteran’s Administration.

Find a good care facility.  Finding a place you have confidence in will provide peace of mind while taking respite.  If possible, keep the same facility for each respite break so the staff is familiar with your caree and the caree is comfortable with the staff.  It makes a huge difference knowing your loved one is in good hands.

Self-care, Self-care, Self-care. Whether it is taking a walk, taking a trip, seeing a movie, reading a book, hanging out at home with the animals or getting pampered, it is important to use respite for some “me time.”  Of course, there are errands and chores that need to be done but I don’t recommend doing only errands (unless you just love to do them).  

Don’t feel guilty about taking respite. (Sure, easy for me to say!)  Taking a break refills my bucket.  It helps me be a patient person. Respite rejuvenates me so I am a better caregiver (at least it does when I don’t squander it on chores). There is no reason to feel guilty about taking a break.  If that still doesn’t convince you, then think of it as doing your caree a favor. They may need a break from you too! 

Please add your own tips in the comment section (I might listen to you more than I listen to myself!).

Oh, and as far as that weekend respite? We have one scheduled in a couple of weeks. 

Never give up!

Epilepsy Awareness Month Day 21: Managing Incontinence

Before we get to today’s topic, I just want to say: OH MY GOODNESS!  We are two-thirds of the way through Epilepsy Awareness Month! My purpose this month has been to post a video each day about the impact epilepsy has had on Robert.  My intent was also to keep the videos to two or three minutes. 

Well, one out of two isn’t bad.  

So many choices - at the pharmacy and online

There is just so much information to share that it is difficult to keep the clips short but I am still trying!  I sincerely appreciate everyone reading and watching and sharing in order to help spread epilepsy awareness and education. 

Managing incontinence has been a struggle for us.  When Robert was younger, he would lose control of his bladder during seizures but that is different than general incontinence. When I first took over Robert’s care, I had no idea he was incontinent.  He started out in a Skilled Nursing Facility since he was on long-term I/V antibiotics and the staff called to ask if Robert was incontinent. 

I answered no, not at all. Why do you ask?

They then told me how he was not able to make it to the bathroom and how he was wetting the bed overnight.  I still didn’t consider him incontinent; I just thought he was having accidents. 

The first step to managing incontinence is to recognize what is happening.  Even after agreeing that Robert is incontinent, I kept him in pull-up style briefs so that he could go to the bathroom on his own and only have the pull-ups in the event of an accident.  I was trying to keep Robert as independent as possible and ended up just never actually catching up to the incontinence. 

Once I realized Robert was really, truly incontinent I would warn all health care workers when Robert was in the hospital or in a SNF.  I explained that he is especially wet overnight and they would nod their heads and tell me they would be able to take care of it.  Then the next morning they would tell me, “Wow! He is definitely incontinent.”

Welcome to my world.

Robert’s incontinence is due to a combination of the signals from his bladder not reaching his brain fast enough and not being able to move quick enough to get to the bathroom in time. This is all part of his increased cognitive impairment and overall decline due to his uncontrolled epilepsy.

This is the impact epilepsy has had on Robert.

Here are few tips to help manage incontinence:

1. Consult with a doctor about the incontinence.  The physician should be aware of it in order to find an underlying cause that needs to be addressed;
2. Figure out what is covered by insurance. Check with a medical supply store or pharmacy to see if incontinent supplies can be covered by Medicare, Medicaid or other insurance plan. Robert gets a monthly allotment of incontinent supplies paid for by Medicare and Medi-Cal. While I am grateful for the assistance, there are never enough supplies. Richard and I spend between $150 to $200 month on extra briefs, bed pads and gloves and could spend more. We realize not everyone can spend extra on supplies. Get as much as possible covered by insurance and then prioritize to figure out what supplies are needed and how much extra money is available to spend on them;
3. When shopping for briefs, size does matter. It is very difficult to put a brief on another person if it is too small. In addition, a too small brief will not be adequately absorbent;
4. Absorbency is critical. All briefs are not equal! The monthly supplies we get include a medium absorbency brief (it is classified as “maximum” absorbency but it is not.)  We order a more absorbent brief online and use those as much as possible but they are expensive so we can’t use them all the time. Instead, we use the less absorbent briefs when we are home during the day and we change Robert several times throughout the day;
5. Invest in cloth bed pads. I didn’t do this until recently and am kicking myself for waiting so long! These are so much more absorbent than the disposable bed pads which is good for both Robert’s skin and the bed;
6. Use a barrier cream. Urine is very harmful on the skin and a barrier cream can keep the skin healthy. 

I would love to know what tips you have for managing incontinence.  Please let me know in the comment section.

Thanks again for helping to spread epilepsy education and awareness! 

Epilepsy Awareness Month Day 20: Memories

One impact epilepsy has had on Robert is on his memory.  I don’t quite understand why he has memory problems (which have definitely increased as time goes by) but I am positive it has to do with his overall decline from epilepsy, his brain surgeries, medications, head trauma and uncontrolled seizures. 

Robert and our childhood dog, Tara

Rereading that sentence makes me realize that I do understand why he has memory problems but I don’t quite understand the mechanics and details of it. Whenever I am unclear on something going on with Robert, I do some research and then talk to his neurologist about it.  Epilepsy Action “the UK’s leading epilepsy organisation” addresses the topic of memory problems in people with epilepsy.

Robert’s neurologist is aware of his memory problems but we haven’t done anything yet to resolve them.  I am not sure there is anything that can be done considering he has to be on all of the medications he is on and the damage to his brain from the traumas and surgeries has been done.

Sometimes after a seizure, Robert is confused and doesn’t know where he is or who we are. Recently, he has had trouble remembering who I am, in particular.  He has even said things like, “You’re not Trish” or “You’re like a sister to me” but these have been after a seizure. 

This morning, I was driving Robert to Day Program and was talking about the weekend when Robert said, “My sister Trish is going to pick me up that day.” 

I did a double-take (it was a quick one since I was driving).  It is possible he had a quick seizure that I didn’t notice but it was very disconcerting.  Eventually he realized I was Trish but it took a few minutes of talking to him for him to realize it.

What is amazing to me is that he remembers things from when we were kids (better than I do) but can’t tell me what he ate for lunch. (Although, he was able to tell me that he did not have Rocky Road ice cream last night for dessert so it was Rocky Road ice cream night tonight.)

Robert started telling a story at dinner out of the blue.  I grabbed the camera part way through and captured him talking about moving out to California, his favorite book which he read as a young boy and also about changing schools when he was in high school. 

He said he had to change schools because he was having too many seizures and the school asked him to leave.  I don’t remember this but don’t doubt it one bit. 

It broke my heart a little.

The clip shows how Robert struggles for words at times and also searches for a memory that he just can’t quite reach. 

The background noise is distracting so I apologize.  I didn’t intend to film him during dinner but didn’t want to pass up the opportunity to capture his memories. 

Epilepsy Awareness Month Day 19: The Careful Dance of Sickness

Despite my best efforts to keep Robert from getting my cold (which I got from Richard, by the way), Robert got sick.  He was congested for a few days then it hit in full force and last night Robert was wheezing and shivering which usually means a temperature is about to break out and pneumonia and sepsis are not far behind.

Credit: World Sepsis  Day Organization

There is always a concern of pneumonia and sepsis with Robert since he has weak lung muscles (part of his overall weak muscles and, yes, this is all due to a lifetime of uncontrolled seizures).  Robert is unable to get a good cough to get the congestion out of his lungs.  It just sits there brewing bacteria.  Then it turns into pneumonia, (usually with sepsis) and Robert is in the hospital in no time. The hospital stay leads to a decline and it takes forever to get Robert back to baseline. 

We have to stop this downhill ride as soon as we can.

When Robert is sick, I take his vitals at least twice a day.  Signs of sepsis include fever, high pulse rate and low blood pressure so I am on the lookout for these symptoms.  We keep a log of vitals so I know what his usual stats look like.

Robert’s pulmonary doctor agrees (his GP is a little less aggressive in his treatment so happily punts to the pulmonary doctor). The plan we developed with the pulmonary doctor is to put Robert on antibiotics early so that his colds do not develop into pneumonia.

Of course, colds never happen during regular doctor’s office hours.

While getting Robert ready for an early bedtime and dinner in bed, I called the doctor’s office and left a message for the GP on call (sometimes I call the pulmonary doctor’s service first but occasionally I start with the GP).  Robert’s doctors are very good about returning calls quickly and this wasn’t any different.

Since the doctor calling me back most likely doesn’t know me or Robert, I try to establish very early in the call that I know what I am talking about.  I am so adamant about not taking Robert to the hospital unless absolutely necessary, I don’t want to be dismissed.

I give a brief history of Robert’s pneumonia and sepsis, my reluctance to go to the hospital due to that causing a decline (I have yet run across a doctor who disagrees with this), rattle off his vitals and any other symptoms (labored breathing and shivering for instance).  Then I ask for antibiotics. 

There is usually hesitation which I completely understand.  However, Robert is not a healthy, young man who might become resistant to antibiotics when he is ninety. He is already resistant to a few antibiotics. It is more of a risk not to put him on antibiotics. 

Still the GP hesitates. They have to look at the chart, they have a policy against prescribing antibiotics until there’s a fever, they want me to wait until morning.

Deep breath.

I explain Robert has a pulmonary doctor and would they mind if I called that exchange as they have prescribed antibiotics in the past.  I’m not really asking permission but I do want to give them a courtesy “heads up” that I am going up the chain. 

They are usually more than happy to have me do this.

So I start over with the pulmonary doctor after hours number.  Run through my pitch for antibiotics and get them. 

Last night we were up against a deadline: the pharmacy was going to close soon. Yikes!  I need these antibiotics!

I was thrilled when the on call pulmonary doctor was Robert’s own doctor!  Woohoo!  I didn’t have to make my plea – I just had to give him the phone number of the pharmacy and tell him the last antibiotics that worked for Robert.

Hospitalization averted!  (At least everything has been done to avoid a hospitalization.)

We just wait for the antibiotics to work and for Robert to feel better.  I talked to Robert tonight to see how he was feeling and he said he is feeling a lot better now.  He then tells us about other people helping him and has a special message for Bowen – apparently someone who helped him out today at Day Program. 

Epilepsy Awareness Month Day 18: Caregiving as a Team

Richard and I have been together for 18 years and raised three kids together (two his, one mine, although we just call this “family”). Even though we have different parenting styles (mine is better, of course, if only because I am the one writing this), we managed to get the kids to adulthood with very little need for therapy. 

Enjoying respite time

That’s a win.

Now, Richard and I care for Robert.  We still have different styles in caring for him but we do a pretty good job of dividing duties and making sure Robert is healthy, happy and safe.  We are actually at our best during a crisis which, actually, I’m not sure what that means about us but I don’t have time to analyze it. 

The impact of epilepsy on Robert extends to us, too.

We are certainly not perfect and we do have our days where we need some quiet time before we lose our minds (okay, probably me more than Richard) but what we do works for us.

Tonight, we’re dealing with Robert being sick so this is going to be a quick post (we shot the interview last weekend).  As soon as we realized Robert was wheezing, shivering and having trouble breathing, we fell into our “crisis mode.” We got Robert into pajamas, into bed, a call into the doctor, on his oxygen, medicated, vitals taken and symptoms logged – pretty much without needing to say anything.

It isn’t always easy but we manage to get everything done and even have a few laughs every now and then. 

That’s a win too.

Fall Prevention: Handi-Ramp

A representative from Handi-Ramp contacted me to see if we would try out their handi-treads for stairs and give them a review.  I don’t usually do this but since they are a product designed to prevent falls, I thought it important to share as much information about them as possible.

Falls are a huge part of our life and can be the turning point in a person’s health, particularly for the elderly or disabled.  According to the Centers for Disease Control and Prevention, “Each year, one in every three adults ages 65 or older falls and 2 million are treated in emergency departments for fall-related injuries. And the risk of falling increases with each decade of life.”

Robert’s seizures and mobility problems make him a high fall risk and he has been injured many times from falling during a seizure. Robert’s mobility and balance problems also prevent him from using stairs so, unfortunately, we could not use the Handi-Ramp product for Robert.

However, my mother-in-law, Carol, was a perfect candidate for the stair treads from Handi-Ramp. Carol lives in a mobile home and has to maneuver stairs to get inside. Carol actually broke her femur this year from a fall she had from slipping on a grape in her kitchen. While the fall was not on the stairs, we do worry about her managing the stairs every day.  Carol has had strokes, breathing problems and wears a pacemaker. Both knees have been replaced and only seven months ago she broke her femur.  She is also stubbornly independent and lives alone. 

So we worry about falls.

Carol's stairs BEFORE Handi-Treads

My husband, Richard, and I jumped at the chance to try out the Handi-Ramp stair treads.  We worked with the reps at Handi-Ramp to get the right size for Carol’s stairs. Everyone we have been in contact with (including the CEO, Thomas Disch) has been terrific.  Thom was especially helpful when we were trying to figure out which size to use on Carol’s stairs. Richard measured the stairs and sent Thom a picture of them to give him an idea of where we would install the treads.

Thom shipped six of the 30 inch by 3.75 inch treads for Richard to install and we received the package very quickly. Richard opened the package to see what he would be installing and was impressed with the sturdiness of the treads and raved that “they look like they will never wear out.”

Richard got most excited about all the holes available to use for the screws! There were many holes spaced throughout the stair tread in order to make it easy for the installer (in our case, Richard) and to ensure the safe and easy installation of the treads. Richard said the treads were, “more secure because of the number of screws available to use.”

Richard was able to install the stair treads quickly and easily. (Sounds like it was so easy, even I could have done it!)  No professional installer is needed for these stair treads.

Installation was a breeze!

Once they were installed, Carol tried them out and has been using them for a couple of weeks now. She said that she loves them and, “They make me feel a lot safer.”  She even said, “They look good too!”  Richard pointed out the stairs he installed are chrome in color which are easy to see (although Handi-Ramp also has options in brown, black and yellow).

Carol was a little concerned the raised buttons on the treads would hurt her hand if she fell on them but we explained the treads are designed to grip her shoes so she won’t fall. We assured her she won’t ever have to find out if her hand would get hurt on those buttons!

AFTER: A great comparison between
the old and the new

Most importantly, Carol summed up what all of us think about them, “I like that they are so sturdy.”

Feeling safe and staying healthy is so important. Since Carol lives alone and is recovering enough from her broken leg to get out of the house, having peace of mind that she will be safe going up and down her stairs lets us all breathe a little easier. 

Pricing for the size we used starts at $13.95 per Handi-tread. Carol is very cost-conscious and thrifty but said they are “worth it for the peace of mind.” For the material and ease of installation as well as peace of mind, I agree they are more than fairly priced. Even better, there's a coupon! Please use code BLOG2014 for a 10% discount. 

The quality of the product is exceptional and I am happy to recommend the stair treads from Handi-Ramp.

Epilepsy Awareness Month Day 17: Photo Surprises

It is a good thing Robert is a ham! I certainly couldn’t get him to participate in so many videos unless he loved the camera. 

Robert is in the middle of this group of pictures -
standing tall

Robert also loves to take pictures. For years, Robert showed up to every family event with a camera around his neck.  I wonder how much of that was passed down from our mom who also loved her camera.  She created a dark room in our house so she could even develop her own photos (a few of which I have hanging in my office). She was a fanatic when it came to her photos and there were so many “take two” action shots at Christmas and birthdays, it became a family joke.

All three of us kids: Can’t we just open our Christmas presents? 

Mom: Not until we get one more shot of racing down the stairs, now get back up there! Look excited!

Dad: In the background, laughing at all of us!

Since we lived in Nebraska when my brothers and I were young, Mom also used to usher us into the basement during a tornado warning and then race up the stairs and outside to capture pictures of storm clouds and – I’m sure she hoped – a tornado or two. 

Yeah, Mom was a little on the wild side. 

Robert seemed to get that photography gene from Mom. (It actually might run in the family as one of our cousins is a terrific photographer!). 

Robert still likes to take photos but it is practically impossible for him to manage a camera since his dexterity has declined and his tremors make it difficult to hold the camera steady.

It saddens me that a hobby Robert really enjoyed (and maybe in some way, connected to our mom with) is something he can no longer do.  He just can’t operate his fancy camera anymore. I have given him disposable cameras to use but they just don’t hold the same appeal to him. 

The impact epilepsy has had on this part of Robert’s life is that it took away the ability to continue to do a favorite hobby.  He still enjoys being in photography class at his Day Program and usually lists it as one of his favorite things to do so the hobby hasn’t completely ended. Plus, Robert has other hobbies/obsessions: word search puzzles and watching game shows.

When I took over Robert’s care, I found a whole camera bag full of undeveloped film. It sat for years on my to-do list until I finally took them to Costco for developing this past weekend.  I was afraid these nine rolls of film would be so old or maybe damaged that nothing would be on them.

Only one roll was a bust – the rest held delightful surprises for all of us.

Which, of course, I filmed.

I actually filmed Robert looking at the pictures over a couple of days.  It is not edge-of-your-seat action but it is raw footage of Robert looking at pictures he took and remembering people from years ago.

Makes me want to pick up a camera! Oh, wait . . .

Clip 1:

Clip 2:

Epilepsy Awareness Month Day 16: Epilepsy and Religion

I have always been perplexed about Robert’s deep religious beliefs. 

Trish took Robert to church a while back

In fact, I have found myself annoyed when I am waiting for him to finish saying grace and I am starving to death.  I think it’s a little over the top for Robert to bless me every time I sneeze, cough, clear my throat or burp.

Did I say I burp?  I mean yawn. 

Since I started caring for Robert I have become more fascinated by his devotion to his faith.  It is remarkable and unwavering!  I am really in awe of his ability to have complete faith in God given the challenges he has faced throughout his life.

The other piece of this puzzle is that we were never a religious family.  We went to church on Easter (and boy did I love dressing up and wearing gloves and a bonnet!) and I went to church camp once or twice but we just weren’t very regular in our faith. 

I knew Robert became involved in church after his near drowning experience. He has told the story numerous times of God talking to him and telling him He wasn’t done with Robert yet. Of course, I believe this because even though I may not a church-going, reading the bible, bless you kind of person, I am spiritual.  

The cynical side of me is aware of the connection between hyper-religiosity and temporal lobe epilepsy but I find Robert’s beliefs too sincere not to believe as genuine and unrelated to what is going on in his brain. 

Having that fateful seizure in the swimming pool has had a huge impact on Robert’s life and I believe that is what compelled him to have a complete devotion to his faith and to God.  I don’t know that Robert would be so devout if a seizure hadn’t struck at the moment it did, leaving him in a coma.

Robert’s near-death experience and unwavering beliefs leave me awestruck. It seems to bring him such peace and it is obvious that he wells up with emotion when talking about praying for people and spreading the word of God. 

I have seen many church-going people – heck, even some pastors – who don’t quite have this passion and complete belief in their faith. 

Robert’s conviction and inner peace inspires me. 

In the clip today, I try to find out a little more about what his beliefs mean to him.

Epilepsy Awareness Month Day 15: Friendships, Bonds and Blessings

A devastating side-effect of epilepsy is social isolation.

The Epilepsy Society of the UK discusses the link between epilepsy and mood which, of course, can affect personal relationships. 

Robert and Carol: a bond and blessing

Whether this is because of the medications or the fear of having a seizure in public, many people with epilepsy withdraw, become depressed, lose friends and alienate family. When Robert was a teenager he was surly, angry and depressed. 

I found him once sitting in a dark closet (which is a little disconcerting since I thought I was just telling everyone it was time for dinner).

Robert has come a long way from those difficult days and now has a way of developing friendships and creating bonds with those around him.  Maybe it is his deep religious beliefs and the fact that he went to church regularly (oh let me use a pun and say “religiously!”). 

Robert went to church religiously.  (Thanks for letting me get that out of my system.)

Whatever the reason, I am happy for the change.  It is a relief to see Robert excited to have friends at Day Program and to see him be friendly with everyone he meets.  He is no longer socially isolated. 

In fact, if he doesn’t say hi when passing by it just means he didn’t see you.

There are special people in Robert’s life and I can’t logically explain why these bonds are stronger than any others.  I guess in the same way I can’t explain why some people remain friends for life and others drift away, I can’t explain Robert’s magic touch with certain people.

Robert prays for people he has never met – my caregiving friends that have grown to love Robert just by reading about him. 

Robert always had a close relationship with our grandmother and called her daily when they lived in the same town. I have tried to keep that relationship going but that has been a challenge (mainly because Robert has a difficult time talking on the phone and he can be hard to understand). 

Robert also had a relationship with Judy, a woman who also has epilepsy and who Robert lived with for many years.  I believe they met at an epilepsy support group which is a great way to combat social isolation. 

Robert has a terrific, “jokey” relationship with Richard. Robert adores Other Brother and proudly tells everyone that he is a “bookkeeper for the city of San Francisco.”  (That’s kind of close – he’s a principal in an actuarial firm located in San Francisco.)

I know Robert loves me but he loves telling people I am five years older than him even more. J

One of the most special relationships I have the privilege of witnessing is that of Carol and Robert.  Carol is Richard’s mom (my mother-in-law) and is an absolute gem of a woman.  She’s tough, independent and funny.  And she adores Robert! 

Robert loves seeing her and has been known to even offer her a hug (and he’s not a huggy person).

The clip today is of Carol and Robert talking about their relationship.  Robert is clearly emotional when talking and he is not an emotional guy (much of that is his meds as extreme emotions are a seizure trigger for him).  They both tell each other how blessed they are to know one another. 

I hope everyone can find a special friendship or two and not let depression, fear or anxiety prevent those relationships.  Given my experience with attempted suicide in my family (mom), however, I am committed to talking openly about depression and suicide so want to briefly address that issue here. 

If things seem that bleak, please reach out for help.  Reach out to the National Suicide Prevention Lifeline at 1-800-273-TALK (8255).  Call 911.  Notify your doctor of these feelings so a medication change or adjustment can be considered. Reach out to a friend or family member.

The interview with Carol and Robert really is special to watch (one which would have been even better if I hadn’t set up the interview right next to a major thoroughfare)!

I’m learning . . .