We're “Going” to the Movies!

I love movies! When I was younger I really wanted to be an actress and even had opportunities to be an extra in movies being filmed in our city.  It was such fun watching the process, being involved in the process, the multiple takes, the energy of the production and just everything about it. 

Watching a really good movie is just as exciting and if I had my druthers, I would stick around to the very last credit just to honor every single person who worked on the movie.  (Staying to the end is always dependent on how many people are trying to climb past me to get out, who I am seeing the movie with and whether it was a long movie and I have to use the restroom.)

It’s complicated.

Replicas of Academy Award statuette in a gift store
in Hollywood (Photo credit: Wikipedia)

My dad loved going to the movies too. Seeing a movie together was usually the most enjoyable times we had together.  I didn’t have to muster up patience to listen to his conspiracy theories or about his latest escapades that involved choices he was making in his life (most of which I didn’t agree with).  We could watch a movie together and then talk about the impact it had on us and what we liked and didn’t like about the movie.  We mostly enjoyed the same type of movies: action or thought-provoking or inspiring.  I cannot watch horror or gory movies so we avoided those. 

We liked movies so much we both decided we wanted to see every Academy Award winning Best Picture movie.  Dad saw a lot of movies but we didn’t even come close to polishing off the list of 85 movies (those who know me have no doubt in their minds that I have a spreadsheet listing these movies). 

Seeing all of the Best Picture winners is still on my Bucket List but so is seeing other movies that are meaningful, powerful or just pure escapism.  I’m not really a movie snob but I do have one rule:

BE QUIET!  Please don’t talk during a movie (whether at home or in the theater – even during previews)!

Now that Robert lives with us it is a little more difficult to go out to the movies.  Robert has mobility issues plus he doesn’t usually have much warning when he needs to use the restroom. It makes being able to watch a movie without interruption a little challenging.

Richard and I have decided to watch movies at home (we’re on a documentary kick right now) and I hope to check off a few more Best Picture movies from my list.  I also want to watch a movie or two with Robert if I can ever tear him away from Jeopardy or his new favorite show, Family Feud (admittedly, that show is addicting for some reason).

Caregivers and their carees need entertainment and many times it needs to be cheap! It’s not easy to take a family to the movie theater with the expense of tickets, popcorn and drinks.  I sneak in water or soda (shh! Don’t tell!) but I’ve yet to try sneaking in popcorn.

Watching movies on DVD or through Netflix is a great option for caregivers and their carees.  It’s home-based, the snacks are cheaper and mobility problems are no longer a consideration.  Since availability of family restrooms is always a consideration of mine, the bathroom at home is close, available and the movie can be paused if needed!

I think it would be fun to review movies that caregivers can watch at home with (or without) their caree for either free or fairly cheap as well as the occasional first release movies in the theater.

Watch this space (or www.caregiving.com) for the occasional movie review!  I’m not a professional reviewer but I do love the movies and will give a “regular person” review of the movies. 

I look forward to “going” to the movies with all of you!

Jeff Klauk: Golf, Epilepsy, Advocacy and Family

Jeff Klauk is a professional golfer, dad, husband, son and brother.

He also has epilepsy and is an advocate for epilepsy awareness and has taken The Pledge to Go Beyond Okay.  On this website, I watched a clip of his wife talking about being his caregiver and describing Jeff’s seizures.  She describes Jeff chuckling at the onset of his Partial Onset Seizures which immediately endeared this family to me as Robert will oftentimes chuckle when he is coming out of his seizures.   

In order to get the word out about this initiative, he and Dr.Selim Bendadis (who is the Professor and Director of the Comprehensive Epilepsy Program at University of South Florida and Tampa General Hospital) sat for hours doing interviews about The Pledge and life with epilepsy.  

Hours of interviews and I was fortunate enough to be one of the interviewers!  The format was very simple: I had ten minutes to ask one or both of them whatever questions I could come up with.  They would be filmed and my voice would be heard asking the questions.  This immediately set my mind at ease – no need to buy new Spanx!

The first order of business was to refresh my knowledge of golf.  Okay, there wasn't much knowledge to refresh – I had to basically start from scratch.

Clubs. Eighteen holes. Patience. PGA tour card. 

Got it.

I next concentrated on what to ask both of them (I couldn’t just ask one of them questions and have the other sitting there - Miss Manners would have my head!)  It took me several days to figure out what I wanted to know from Jeff and Dr. Bendadis but soon realized I wanted to tailor my questions to what I am passionate about: family and advocacy.  

It didn’t take long into the ten eleven minutes to realize how passionate Jeff is about his family and epilepsy advocacy too.  Jeff shared what he would like his kids to learn about epilepsy: be persistent and never give up.

Dr. Bendadis shared what he sees as the future of epilepsy treatment and research.

I should note that while Jeff is following one treatment plan that has successfully worked for him, he is the first to point out that no one treatment plan works for everyone.  Jeff reminds us that epilepsy has no cure but it’s important to never give up in our search for it.

It was an honor to talk with both of them and I thank both of them from the bottom of my heart for their time, passion and advocacy.

Thankfully, they didn't ask me any questions about golf . . .

What Seven Minutes Means to Me

Seven minutes is not a lot of time to do anything. 

Heck, 10 to 20 seconds isn’t any time at all to get anything on my to-do list accomplished but it is long enough for Robert to have his typical seizure.

Robert's helmet has taken a few good knocks

Head down and to the right.

Tugging on his clothes.

Hands twitching.

Giggling as he awakens.

If he is standing and has a seizure and there is no one behind him, he falls backwards to the floor (or against a wall or onto the toilet). Looking at the many scrapes on his helmet tells me that is the best piece of medical equipment he could have.

Robert doesn’t know when he has a seizure and will usually argue with me if I tell him he had one.  I stopped telling him unless he asks or he lands on the floor (he has had enough seizures in his life to realize if he wakes up on the floor, he had a seizure).

The typical seizure for Robert doesn’t involve convulsing and doesn’t usually last very long.  A couple of years ago and with his permission, I filmed one of his seizures to give people an idea of what they look like since his aren’t like they are portrayed in the movies.

Robert’s seizures are uncontrolled and I’ve always estimated he had probably five seizures in a week. It was really difficult to gauge because New Home never kept track like they were supposed to and would give me seizure logs showing maybe three seizures a month if I got a log at all.  I knew he was having more than that because he had them almost daily when he was with us on the weekends.

Now that he lives with us, I have been able to keep better track of his seizures.  It’s difficult to know if he is having more than normal because they weren’t always noted before he lived with us.  Either Richard or I are always with Robert and even if we aren’t, we are watching him on a video monitor.  I’m fairly confident we are aware of most of his seizures (although, at ten seconds a shot, it is easy to think we miss a few here and there). 

Since moving in with us, we have recorded Robert having at least two seizures every day.  Sometimes more than that but rarely lasting a minute or longer.  There’s a seizure in the morning while he is getting cleaned up for the day which I can prepare for (he’s standing when it happens so I’m prepared to catch him).  So far, that’s the only one that is predictable but I feel lucky there’s any consistency at all since one of the biggest problems with seizures is how they strike without warning. Sure, there are triggers which people can figure out but it’s never consistent (at least we haven’t found them to be).

Three to four minute seizures are really at the extreme of his “typical” range.  A few years ago, Robert had a cluster of long seizures just after moving into New Home. As it turned out, it was because Nurse Ratchet had arbitrarily decided to change his medication schedule to fit better with her own schedule.

I was about as happy about that as you might imagine.  

These blocks of time seem so tiny when thinking about any activity other than a seizure.

Ten seconds?  Who even thinks about ten seconds passing by?

Unless you’re counting or watching the stop watch, waiting for the seizure to pass.

Three minutes?  My husband can load and unload a dishwasher in that amount of time.  I can put a load of clothes in the dryer and a new one in the washer.  Crazy Puppy can eat his meal and our other dog’s meal in that amount of time. 

It can also be a very long wait for the seizure to pass.

Seven minutes?  I can get a lot done in seven minutes – make Robert’s bed in the evening and get started on play time with the dogs.  Robert can eat his bowl of Rocky Road ice cream in seven minutes. 

Robert had a seven minute seizure this week and it was extremely unsettling.  The stop watch kept ticking away the seconds, then minutes while his head bent down and to the right at the dinner table.  His hands twitched and he started smacking his lips.  At the ten second mark, I expected him to come out of it and begin to eat dinner.  Twenty seconds passed and I stood by him, watching. One minute went by and Richard stood on the other side of him in case he fell off his chair.

Robert continued to look to the right with his eyes closed, smacking his lips and twitching his hands.

Two minutes. Three minutes. Three and a half minutes.

The wait was excruciating.

At five minutes, I gave him an Ativan which we have on hand for just such a scenario.  It wasn’t easy since it is in a pill format but somehow, he swallowed it.

Two minutes later, he started to come out of the seizure.  After a few more minutes, he knew who I was and who Richard was but didn’t know where he was.

Several more minutes later, he was eating his dinner and declaring the meal excellent.

He was pretty groggy and sleepy the rest of the night but once he was in bed, I again asked how he was feeling and, of course, he answered, “Excellent.”

Seven minutes of a seizure was extremely scary and unnerving for me and my husband.  Seven minutes seemed to last forever for us. 

For Robert?

Seven minutes was not near long enough to take the excellent out of Robert.

Robert’s Bucket List

Richard started sharing his Bucket List on Caregiving.com (he actually calls it his 55 Gallon Drum List because, well, just because my husband is goofy sometimes).  It’s fun to read about his dreams and to see if there is any wish I didn't know about (there is!).

Photo Credit: Matt Stevens
(who can now cross this off his own bucket list)

Richard’s list includes:

1. Learn to scuba dive;

2. Fly a glider; (I didn't know about this one)

3. Visit Paris;

4. See Stonehenge;

5. Learn to brew beer;

Richard's list got me thinking about my own wish list of places I want to go and things I want to do in this lifetime:

1. Go to Paris;

2. See the Mayan ruins;

3. Go on a cruise to Alaska;

4. Watch every movie that has won the Best Picture Academy Award;

5. Read all the books that I have on my living room bookshelves;

We were talking about this when returning from what is now our tradition of dinner out on Friday nights and Richard asked Robert what was on his bucket list.  Robert didn’t know what the heck Richard was talking about so Richard explained: What are some things you have always wanted to do? 

The simplicity of Robert’s answers should not have surprised me.

1. Watch Jeopardy;

2. Do Word Search puzzles;

3. Go bowling;

4. Go to France;

Robert jokes about going to France so I love that it is on his bucket list.  He also jokes about drinking whiskey and going to New York so I suspect those will show up on his list the next time we ask him. 

What’s on your 55 Gallon Drum list? 

Co-Caregiving: Recognizing the Pitfalls and Avoiding the Sinkholes

I have to break it to you: Co-Caregiving is not all roses, sunshine and success. 

Yep, there are bad days.  On my good days, I will break down that bad day (or days) into moments and realize we had some bad moments. 

Co-caregivers need to have some fun - and kisses!

Of course, who wants to be so rational on a bad day?? 

Co-caregiving situations can vary and since the relationships vary too, so do the pitfalls.  My husband, Richard, and I are co-caregivers for my brother, Robert.  I help Richard with some of the caregiving for his mom but would actually classify him and his brothers as co-caregivers for her. 

Siblings can be co-caregivers for a parent; friends can be co-caregivers for a neighbor and spouses can be co-caregivers for a relative or friend. Each relationship brings its own dynamic and issues to the situation.

Is there sibling rivalry between the co-caregiving siblings?  You can bet those hurt feelings and unhealthy communication styles learned while growing up will show themselves while caregiving.

Neighbors may be kind enough to step up to help someone they have lived next door to for many years but they may not like the other neighbor who is helping also.  Those differences and problems will show up in co-caregiving.

Spouses as co-caregivers?  If you’re past the honeymoon phase then you have been married long enough to know what hot buttons set off your spouse.  Trust me; caregiving will not make those sensitive issues go away.

Many of the pitfalls co-caregivers fall into are due to what’s going on in their relationship anyway.  The good news is, if overcome, these can easily turn into successes. 

Dueling Expectations.  Expectations can be unrealistic to begin with but when there are two people with different expectations and they don’t talk to each other about those expectations, it can lead to problems. 

Richard and I don’t have a huge problem with this particular pitfall but we do have different expectations about the decline of Robert (at least the timetable of an expected decline). What we’ve done right is discuss these differences.  Richard sees Robert declining at a faster rate than I do and wants me to be prepared to provide a higher level care for him when it is time. He worries I won’t know when it’s time to find a facility for Robert again.  I disagree with the rate of decline Robert is experiencing and actually think it has stabilized since we have taken over his care full-time.

I am confident, however, Richard and I will be able to discuss these expectations and Robert’s need for additional care as that becomes necessary.

Solution. The most important way to avoid falling into a sinkhole with this particular potential problem is to have a discussion about expectations before committing to caregiving and continue the discussion while caregiving.  It’s important to keep an ongoing dialogue with your co-caregiver about pretty much everything.

Power Struggle.   The beauty of having two control freaks as co-caregivers is we can get stuff done!  Where trouble might happen – theoretically speaking, of course – is when we both have our own way of doing something and the other person’s way isn’t “right.” 

Not that this ever happens to us . . .

For the most part, these sorts of power struggles over the way something is done can be resolved with a couple of deep breaths and remembering that how one person makes a bed isn’t necessarily worse than how another person makes a bed.

Theoretically.

The problem is with more critical aspects of caregiving.  For instance, there should not be a struggle over who talks to the doctor or how medications are dispensed. 

Solution.  If the struggle is over how someone makes a bed or does laundry, first try to understand why the other person does things a certain way.  For instance, I layer Robert’s bed with a fortune in bed pads but I do it so Robert’s overnight incontinence doesn’t cause me more work in the morning.  I wash all of his clothes in hot water so his clothes and sheets are sanitary.  However, as Richard rightly points out, “You both need to trust each other in that they can do it.” It may not look the same or be done the same way but as long as the underlying reason for doing something is taken into account, then it might be okay to let go a little.

Theoretically.

As far as the more essential parts of caregiving, the responsibility for them need to be discussed and agreed upon by the co-caregivers.  For us, Richard is the primary caregiver for his mom, so he is the point of contact with the doctors.  I am the primary caregiver for Robert so I talk with his doctors and handle his medications.  We both can be back up in a pinch but unless Richard asks me to talk to his mom’s doctors, I sit back and let him handle the conversation. His brothers do the same.

Equal Division of Responsibility.  This was counted as one of our successes but it can just as easily become an issue.  I have this neurotic need to be confident I am doing my fair share.  This can cause a problem because when I want to go to a yoga class or spend time with my daughter, I may feel that I am taking more time off than Richard has had.  This leads me to the annoying behavior of verifying with him that he doesn’t mind I go. “Are you sure? Are you sure? Are you sure?”

His response is usually, “I WOULD NOT HAVE SAID ‘NO PROBLEM’ IF I HAD A PROBLEM." (Yeah, those caps are all his). 

Solution.  Communicate with each other. If I ask if Richard minds staying with Robert while I do something for myself, I need to trust his answer.  If I’m feeling overwhelmed and I feel I am doing more than my share, I have to be able to tell Richard I need help.  If Richard has had a run of doctor appointments or trips to the hospital with his mom, he has to be able to raise the white flag and ask his brothers or me to step in for a day or two. 

Attitude adjustments.  This is a news flash to absolutely no one but I’ll mention it anyway: I am a pretty serious person.  I am focused, committed, driven and need to sometimes be reminded to laugh a little.  On the other hand, Richard loves to joke around (yes, even when I’m trying to stay serious) yet if something bothers him, he will hang on to it like a dog with a bone. He stews, it festers, unpleasantness ensues. 

(I don’t like admitting these things to myself much less in a public forum but if we’re going to be successful co-caregivers, we have to know what might drag us into a sinkhole.)

Solution.  We both need to chill out sometimes.  Let things go. Laugh a little more. Stop taking ourselves so seriously.  After all, we don’t actually know how many more caregiving days we will have and I certainly do not want to waste them with a bad attitude.

We are new at this co-caregiving role but we seem to have more successes than pitfalls.  As we continue to work out the bugs and learn from others who have more experience with this than us, I suspect we will have more successes to share. 

Our co-caregiving style may not work for everyone (heck, it sometimes doesn’t even work for us) but we know we’re in this together and that means a lot to both of us.  What’s important is remembering to let go of the little irritants and embrace the goal: taking care of a family member or friend who can no longer take care of themselves and enjoying that role for as long as possible.

We are always looking for more examples of co-caregiving so please share what pitfalls you have been able to resolve in your caregiving experience. 

Co-Caregiving: Tips for Success

Our caregiving situation is not unusual.  According to a 2009 study conducted by the National Alliance for Caregiving in collaboration with AARP, approximately one-third of caregivers care for two or more people.  

The Team: Trish and Richard with Robert in the middle

In our own situation, I am the primary caregiver for my brother, Robert, and Richard is the primary caregiver for his mom, Carol.  To add to the mix, Richard is a caree himself because of his chronic back pain.  We’re each helping to care for at least two people and we’re doing so together.

Becoming co-caregivers didn’t happen overnight.  It took many years for Richard and I to develop into a successful co-caregiving team. 

This is not to say we are always successful but we will discuss the challenges and pitfalls of co-caregiving in the next post.  For now, let’s talk about what works.

Knowing Our Strengths.  It is important for us to not only know our own strengths but the other co-caregiver’s strengths as well.  Fortunately, we are both organized and prefer “neat and tidy” to chaos (just ask those kids we raised).  Richard tends to nest better than I do yet we all benefit from it!  Before Robert moved in, Richard was on not only a cleaning spree but took up canning jam and spaghetti sauce as well as trying his hand at pickling asparagus.  I’m sure I gained five pounds before Robert even moved in with his never-ending supply of Rocky Road ice cream in the freezer (not that I ever eat ice cream . . . ).

While Richard was canning and cleaning, I was creating spreadsheets for the medication and supplies, ordering supplies and contacting all the agencies we would be dealing with.  My “nesting” showed itself in organizing cabinets in our garage for Robert’s clothes and supplies. 

Recognizing Limits. This is huge.  At any time and for a  variety of reasons (bad day at work, not enough alone time, not enough sleep/food/water, woke up on the wrong side of the bed, increased back pain for Richard), either one of us can feel overwhelmed and cranky. I recognize the signs when I need a break: I’m short-tempered, snap at anyone (including the cat) and have no interest in talking with anyone. Leave me alone when I’m at my limit (seriously, I am not pleasant).  Thankfully, my husband understands this (most of the time) and knows to steer clear. When I realize I’m cranky, I have to figure out what is wrong and then take a break to correct it (eat something, take five minutes for myself) and it helps, even if for a little bit.

When Richard is at or past his limit, it is usually related to his back pain.  He’s either done too much or has a flare-up.  He knows when this is happening (usually a few minutes after the rest of us do) and he will take a nap, go to our bedroom to stretch his back or have some quiet time. 

We both are learning to recognize when the other needs a break without being accusatory or nagging.  “What the heck is the matter with you?” is not often said out loud in our house.  (I’ve been known to think it a time or two, however).

Setting Priorities.  Sometimes it feels as if I have a magical to-do list (and not in a good way).  Every time I cross one or two items off the list, five more appear in its place.  The to-do list is never, ever completely done which makes it a necessity to prioritize.  Richard and I both understand that if we are at our limits (see above) but we still have to have dinner, give Robert his meds and get him ready for bed then it may be a night to order pizza.  Sure, we prefer to have a healthy, home-cooked meal with green vegetables and fruit but sometimes the priority is giving ourselves a break instead. 

Equal Division of Responsibility.  This is very important to me.  I don’t want to feel as if I am not contributing my fair share.  Maybe it’s because we’ve been together for so long but dividing up the responsibilities when Robert moved in was seamless.  I get Robert up in the morning and get him bathed and give him his clothes for the day.  While he dresses, I unmake his bed and start a load of laundry. In the meantime, Richard makes decaf coffee for Robert and a mocha for me.  (I’m spoiled!)  He gets Robert’s breakfast ready and packs his lunch for Day Program.  We share dog duty and both see Robert off to Program in the morning.

In the afternoon, Richard greets Robert when he gets home from Day Program while I’m still at work.  He will clean up Robert if needed and gives him a snack and lets him watch television.  When I get home, I give Robert his meds and start dinner.  Richard does the clean up after dinner and I get Robert started on his bedtime routine of brushing his teeth, shaving and changing into pajamas and getting into bed. 

There aren’t that many variations on the schedule (except hubby sometimes makes dinner – especially if it’s pancake night!).  It feels like a very  fair division of duties which makes us both happy and keeps Robert well-cared for.

Communication.  I hesitate to even include communication as an important part of a successful co-caregiving team because it seems so obvious.  Common sense dictates Richard and I have to talk to one another in order to work as a cohesive unit.  As simple of a concept that is, we do need occasional reminders. I am more than willing to admit we see a therapist every now and then to keep us on track and to work through any difficult issues that come up.

Asking for Help.  I had planned to end with communication but realized something else contributes to our success as co-caregivers - being able to ask for help, either from each other or from an outsider.  We see a therapist, we both get massages to help with stress and reduce Richard’s back pain and we ask one another if we can have a few hours away.  Sometimes I will go shopping with my daughter or Richard will have coffee with his mom and brother or volunteer at the animal shelter.  Both of us have taken up yoga and are okay asking the other one to stay with Robert while we attend a class.  What we need to figure out next is how to get a break together!

It’s early in our co-caregiving journey so I am sure I will learn more of what makes us successful as we go along.  In the meantime, the next post will focus on what challenges and pitfalls we’ve run into and how we manage to not get stuck there. 

Please share your own co-caregiving tips for success!

Co-Caregiving: Developing into a Team

My husband and I work pretty well as a team.

 

We first blended our families together (me with my daughter and him with his daughter and son) and raised these three kids the best we could.  They have all turned into productive citizens and wonderful human beings.  Not that their success is because of us but I’d like to think we at least didn’t fumble too much along the way.  It’s likely they won’t need a lifetime of therapy but maybe just a few helpful sessions.  I can’t ask for more than that.

Co-caregivers: Trish and Richard on vacation

Richard and I also worked together when his back pain became unbearable.  He was rear-ended on the freeway by a drunk driver before we met and he dealt with his injuries as well as horrible pain when his son was just a newborn and daughter a toddler.  By the time we met, his pain was manageable (or so it seemed). Shortly after we married, the pain increased considerably (I try not to correlate the two events).

We worked together to get him the right pain management doctor and the right treatment that worked for him and our family.  We went through some tough trials with the various medications he was on (a few which severely adversely affected his ability to get out of bed or be the least bit pleasant when he was out of bed). 

We (and I’m including the kids here because it was truly a team effort from all of us) plowed through and, eventually, found a terrific doctor who installed Richard’s intrathecal pain pump. The amount of medications he had to take was reduced significantly and, although his pain has not completely subsided, it is at a level he (and the rest of us) can live with.  

After seventeen years together (sixteen of those married), we have developed into a pretty good team but it hasn’t always been easy. Heck, I was ready to lock him out of the house plenty of times during the trial and error period with his medications and the kids would have thanked me!

There was a brief stint as co-caregivers during my mom’s illness before she died as well as during the death of my dad.  We have come to realize our co-caregiving experience is neither perfect nor idyllic but it does work for us and we have been able to smooth out the rough spots over the years. All of these experiences have prepared us for our next co-caregiving experience: caring for Robert and, to a lesser extent, Richard’s mom.

Richard was always on board with helping care for Robert when Robert could no longer live independently and, eventually, with bringing him into our home to care for him. We each had our concerns, however.

I worried that with Richard’s back problems, the extra work with Robert would be too much for him.  Robert sometimes ends up on the floor after a seizure and a big concern for me was Richard hurting his back when trying to help Robert get up. 

Richard’s concerns centered on the logistics of Robert being here. Would Robert be able to stay at his Day Program and will transportation be available for him? Will Robert be happy with the sleeping arrangements since we don’t have an extra bedroom downstairs and he has to sleep on the sofa sleeper?  Will there be back-up help if we need it? 

Our first step was to discuss these concerns and then we had to rely on each other for reassurance.  I needed Richard to convince me he would be honest about any increase in his back pain and I had to reassure him that I confirmed his program and transportation would stay the same and back-up care would be arranged.

We both had to rely on Robert to let us know if the sofa sleeper was satisfactory long-term since he already had adjusted to it for short-term visits.  We explained to Robert that he wouldn’t have a bedroom if he lived with us and he replied, “I know; it’s okay.”

We had our answer from Robert and our reassurance to each other which meant only one thing: the real work was about to begin.

In the next post I will talk about what works for us to make co-caregiving successful.  In the next few days, I’ll also discuss the pitfalls of co-caregiving and how to overcome those without too much heartache.

In the meantime, I invite you to tell us about your own co-caregiving experiences and what works (or doesn’t work) for you.