2018: Goodbye Awful, Hello Gratitude

I fully intended to write about the awfulness that was 2018.  For most of the year, I have been saying it has ranked high on the list of “worst years ever.”

After all, 2018 brought us Carol passing out in our dining room and smacking her head – lying unconscious for long enough that I was convinced she had died. 

Robert was hospitalized three times due to a variety of reasons: the flu (even after getting the shot), sepsis, pneumonia (twice before March), RSV (respiratory syncytial virus), and a week-long video EEG (which caused yet another bout of pneumonia).  He had his usual episodes of aspiration pneumonia which didn’t get severe enough to get him to the hospital but which knocks him out for at least a week.  Oh, and the usual seizure clusters (at least twice a month) which almost seem like the least of the problems he had in 2018. 

Richard underwent four skin grafts on his never-healing wound and saw each one fail.  Even after spending many days in the hospital on aggressive antibiotics and wound care. 

And 2018 also brought me my own huge wake-up call: a stress-related stroke that left me with numbness in my thumb and face. 

I almost forgot!  2018 also decided it was a good year for me to get side-swiped by a semi which left me very shook up but, thankfully, unharmed.

At first glance, yes, 2018 was nothing short of awful and stressful and, most certainly, difficult. 

I was the most overwhelmed I have been in my ten years of caring for Robert last January when both he and Carol were in the hospital at the same time and Richard was still recovering from his first skin graft.  And that was the first month of the year – before the weight of the year really bore down on us!  

I had no idea we were just getting started with our “epic” year. 

So, yes, 2018 was just awful but as I was looking through my calendar and photos from the year, I realized it was something else: wonderful!  I was so focused on how stressful it was that I had minimized the beauty of it. 

While Carol and Robert were in the hospital early in the year, our son-in-law spent hours converting our bathroom tub into a walk-in shower. It is not only so much easier for both of them to get in and out of but it is absolutely gorgeous!   

My best friend married the love of her life and one of my other dear friends drove me the five and half hours to the beautiful ocean-side wedding so I could be there for Joelle!  Sarah and I made the trip in one day so we only missed one day of work but we had a blast surprising Joelle and she got us there and back safe and sound (even with me cringing in the passenger seat because of the ridiculous drop-offs on some of the “roads”).  Bonus: I got to see the ocean!!

Richard and I took a trip to Alaska – just the two of us!  It was so relaxing and so much fun to spend time together without having to worry about hospitals, seizures, medications or caregiving. We saw whales and seals and more bald eagles than I thought I would ever see in my life!  The trip fueled my soul and I could feel the stress washing away. 

We had a second wedding later in the year when my step-daughter was also married and which brought an opportunity for family (including the siblings) to be together.  Two weddings in 2018!

Our annual trip to Disneyland for Epilepsy Awareness Day brought a reunion of sorts with my co-authors.  It feels as if they are always by my side (which they are) but we rarely are able to see each other in person. Hugging them was just what I needed in 2018. 

2018 also led me to a writer’s conference which introduced me to people I probably would have never met if I hadn’t taken the step to attend.  (I’m actually not sure I would have pushed myself to attend if I hadn’t had a stroke.)  It was out of my comfort zone but it is possible this will lead to more exposure for our books and some wonderful opportunities (fingers crossed)! 

And I don’t want to jinx anything but my face and hand numbness seems to be lessoning in intensity!  With any luck, I am hoping it will go away completely. 

When my mom became sick almost 20 years ago and we knew she only had few months to live, our motto became “there is no time like the present.”  We visited the ocean, we welcomed visitors we hadn’t seen in years, we shopped; we shared recipes, watched movies and played games. If 2018 taught me anything, it was to remember that motto and to live like there is no time like the present – whether we are dying or not. I did not need a terminal illness to remember that lesson (although, apparently, I did need a somewhat dramatic kick in the pants.)

Most importantly, throughout the year, I had the incredible love and support of my family and friends.  I know many caregivers are not as lucky as I am and, unfortunately, have family who abandon them.  I am fortunate – no, I am blessed (and I know that word is overused but I have to use it) – to have a daughter who spends time with me and who makes me laugh; a husband who pushes himself through pain to help alleviate my caregiving load and loves me so much; friends who listen to me rant at any time; a son-in-law who, regardless of how busy he is, spends hours helping us with home projects; a beloved mother-in-law who is there for both Richard and I as much as we are there for her; extended family who make me laugh and help whenever we need it and a sibling who not only appreciates the care I give to our brother but who is extraordinarily generous (beyond – I mean, he gifted me with a new car for my birthday! Who does that?!?!).  He is not only extremely generous but also emotionally supportive (and even came through in a pinch when I needed someone to stay with Robert during wedding #2).  I am happy to report that he and Taz are now pretty much best friends. 

My year may have been overwhelming and over-the-top stressful but through it all there were always smiles (sometimes through the tears or after them).  2018 ended with gratitude and love and the realization that we came out alive but also with a hope for a quieter 2019.  

I’m all for lessons and challenges and don’t want to be selfish but a less eventful year would be a welcome relief. 

Here’s wishing all of you a happy, healthy and hopeful year!  May 2019 be excellent for all of us! 

Epilepsy Awareness Month: Grateful and Inspired

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

Every moment.

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

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

These people have grit!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I also interviewed my husband and co-caregiver extraordinaire. 

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

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

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

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

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

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

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

Piecing Together Respite

I followed my own advice: be flexible with respite. I explained months ago to Robert’s case worker that we would love to take advantage of respite. Robert is a client of the local regional center and one of the benefits is 14 days per year of respite care. Richard and I don’t need 14 days – heck, I just wanted a weekend. A few years ago, we used a week when we went on a cruise with family and friends and then afterwards used that same facility for an overnight or afternoon visit on occasion. Usually, we paid for these short stays ourselves or Other Brother helped with the cost of these stays.

Dinner Date! 

Eventually, the director of that facility told me that Robert’s needs were too great for his employees. Such a shame because Robert enjoyed it there (although, he did start to enjoy being spoiled rotten a bit too much) but I understood. Robert’s mobility had taken a hit and it was difficult for the sweet but slightly small-framed, slightly older, ladies to safely help maneuver Robert from a chair to his room to the restroom.

Once we lost that option, it was difficult to find another facility that had availability to keep Robert. I explained to the case worker that we were flexible. Tell me what facility has an opening and we will plan a weekend around that opening.

We found a place a mile from our house and were able to use it for a couple of nights in October. The director and employees were very kind. Robert liked it but found it a little stressful because one of the residents paced and walked and was noisy. Robert wanted him to sit still and be quiet. It didn’t seem to be too big of a deal when the director told me about this but we have not been able to return, supposedly because they now have a full house with permanent residents.

Okay. We can be flexible. Let’s find another house that has temporary availability.

It isn’t that Richard and I can’t take care of Robert full-time. I understand that we get a break because Robert goes to a Day Program during the week. He was going five days a week but we have reduced it to four since Robert seems to need more sleep. Sleeping until noon on the weekends and then getting up at 5:45 a.m. through the week is just too much for him. It seems to cause more seizures and keeps him dozing throughout the day at Day Program. So he is now also home on Thursdays and sleeps late that extra day.

Richard and I can handle that and our jobs and household chores and caring for the assortment of animals living with us.

It is our choice to do so and we can do it.

Sometimes, though, we just want a break. I want a break from the laundry and the routine and the alarms for the medications and the wet briefs and the accidents and helping him brush his teeth and did I mention the laundry?  I even get tired of hearing myself say, “Hurry up, Robert, [insert reason here].” (The van is here/we have to leave for an appointment/dinner is ready.)

The caseworker finally found an available home. I talked to the director who seemed very nice. I explained everything about Robert, including what his seizures look like since people tend to freak out when they hear “seizure.”  Even people who should know better.

Ahh, a pedicure! 

All seemed okay. We just had to wait for a weekend she had open since she had promised space to a few other people seeking respite. It took a few weeks (okay, months) but we thought we had found an open weekend.

Once we had a weekend date, we made our plans! I would take Friday off from work and we would get a pedicure together. We planned to stay home on Friday night and I thought a dinner and movie would be the perfect end to that evening. Richard made reservations at a nearby casino for the next night. This gave us a little bit of a feel of a vacation while not having to drive far, which makes Richard’s back pain flare up. Rachel was ready and willing to watch the dogs. We planned to pick up Robert Sunday afternoon.

Everything was set. Down to the chocolate covered strawberries Richard ordered for the room.

Except . . . it wasn’t.

The director did not have availability for the weekend after all.

The reservation was cancelled.

My chocolate covered strawberries were only a vision in my head.

It looked like respite was not going to happen.

After five minutes of feeling sorry for myself, I thought why not?  Why the heck not?  I decided I was going to make respite happen anyway!

I took Friday and Monday off from work. Robert could still go to Day Program and Richard and I could spend time together while he was at program.

Yes, I was determined to piece together some respite.

Richard and I took time on Friday to get a pedicure.

We stopped on the way home to get chocolate covered strawberries.

Rachel and her fiancé, Matt, offered to watch Robert while we went to dinner on Saturday.

At the movies!

Part of the allure of respite is giving Robert a change of scenery too. I am sure he appreciates a break from me and Richard!

So we all saw a movie on Sunday. It was something different than we usually do. Something out of the normal routine of sleep, eat, medication, Family Feud, repeat.

It was not a typical respite but it was fantastic. Robert absolutely loved having Rachel and Matt visit to take care of him. We had already given him dinner and put him in bed so they wouldn’t have to deal with accidents or bathroom duty. They gave him his meds and corralled Taz when Robert needed some space. 

They even offered to do it again.

Robert hamming it up
with Rachel

There were a few glitches throughout the weekend (Robert had two days of seizure clusters and I pulled a hip muscle which we won’t discuss since this is a family friendly blog).

The seizures and rescue meds make Robert cranky so on Saturday I asked him not to be cranky with Rachel and Matt. He told me, “I won’t be cranky. I like Rachel and Matt.” 

Okaaay. Obviously, a change of scenery was needed by everyone.

While it was not a typical respite we had our moments of respite and it was enough and I am extremely grateful for the break. It actually worked out for the best because there is really no telling how a facility, unfamiliar with Robert and his seizures, would have reacted to his seizure clusters.

I am grateful Richard was flexible enough to go along with this weekend “respite” and beyond grateful to Rachel and Matt for their help so Richard and I could have a dinner date.

Plus, I got my chocolate covered strawberries!

It may not have been typical but it was definitely perfect.

Yum!! 

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!

Appreciating the Goodness in People

Maybe it’s because there was yet another school shooting.

Maybe it’s because two sheriff’s deputies in our area were senselessly gunned down just a few days ago.

It is the small acts of
kindness that leave a mark
on our heart

Maybe it’s because I am sick of all the negative news about all of it: shootings, Ebola, this politician attacking that politician, terrorists – YUCK! I cannot even list all the negative things without feeling sick to my stomach.

In spite of all of this negativity in the world, I have to remind myself there are good people.  Lots of them. Yes, there are heroes who accomplish newsworthy feats but there are also people who just go about their day being kind in small ways. Or who just do a little bit extra at their job and don’t realize how much they help someone else.

They don’t make the news.  They don’t have a viral video to document what they have done. They do not get invited to appear on a national morning show. Sometimes, they aren’t thanked or are even aware of what they have done.

It doesn’t matter.  These are the people who count. These are the ones who remind us there is good in the world and we haven’t all gone mad. These are the people I want to thank because these are the ones who will teach their children how to be kind; show others by example that goodness in people exist.

I realize this is not an original thought but when a string of horrifying events occur, it is a matter of self-preservation to remind myself of the goodness in the world.

Appreciation goes to . . .

• Rodney who delivers Robert’s monthly incontinent supplies. He wanted to be sure we got the supplies timely so made an extra effort to deliver them one evening. He called to be sure we were home then thoughtfully parked halfway down the court and whispered as he came to the house, pushing a dolly full of briefs, gloves and bed pads. He explained, “I didn’t want to disturb the boys.” Oz and Taz were none the wiser!

• Julie, who is Robert’s epileptologist’s nurse practitioner.  Heck, Robert’s whole neurology team. They are responsive to my emails and phone calls; they genuinely listen to my concerns, questions and hesitation about any new medications. They graciously take and review my seemingly endless logs of seizures and vitals and “other symptoms.

• The barista who remembers my drink (which says far too much about my lack of imagination and frequency of coffee runs);

• Tanya from Robert’s Day Program who took time to tell me how much she enjoys having Robert at her program. She gushed how much she appreciates Robert’s positive attitude and his willingness to cheer up others having a hard day. Do I appreciate her because she told me good things? Absolutely not (because she’s told me when Robert was being difficult, too).  I appreciate the communication and her care for not only Robert but all of her clients. 

• Salita, the kind hair stylist at JC Penney.  It is a mutual admiration session when Robert goes in for his haircut and mustache trim.  There are hugs and laughter and often, there are gifts. I cannot explain their connection but it is wonderful to see. 

• Laine, a Facebook friend who lifts my spirits with her encouraging posts and knowledge about nutrition and health. We are on opposite sides of the political spectrum but I can set that aside and be grateful for the strong, supportive woman I know her to be. 

• Pegi, Kathy, Denise, Casandra, Elissa, Lisa, Cathy, GJ, Jane, Teresa and - well I am fortunate to have so many dear friends that are too many to mention. We may have met through caregiving circumstances but I have grown to love each and every one of them because of their extreme kindness and support toward each other and us and many, many others. 

• Carol, who has a special fondness for Robert and shows it every time she visits with him. They share a deep spiritual connection which warms my heart to see;

• Joelle, who is not only my best friend but who works tirelessly as a foster mom to numerous dogs while also being mom to two of her own dogs (one a “foster fail.”).  

• Richard, who may be my husband (so I might be a bit biased) but he has shown what a true friend he is by creating his own team for a Walk for Alzheimer’s to benefit our friend, Steve. Richard will be walking alone but has raised, at last count, $500 for the Alzheimer’s Organization.   

• Rachel, who is a terrific friend to many (both human and of the animal variety), makes me laugh more than what should be legal and who gently reminds me (as only a daughter can) to care for myself as well as I care for others.

As I write this I realize how much goodness there is in my world and how fortunate I am to be surrounded by such beautiful people. I could go on and on because there are so many little things people do that leave their mark on my heart. Perhaps we need to hold those moments especially close when feeling overwhelmed by the bad news of the day (or week or month).

I would love if you added to my modest list in the comments below. I would love to read about the kindness you have encountered!

A Gratitude Reminder to Myself

Things seem a little out of control in my caregiving world right now. 

Grateful for caregiving friends

We have mood swings, difficulty walking and cranky behavior.

And that’s just before I’ve had my coffee!  (BaDaBam)

We’ve had medication changes, lots of coughing and changes in seizures.  Robert has hallucinated a few times after a seizure which is very disconcerting for all of us.

I have called his primary doctor and his neurologist to figure out what is going on.

Robert’s pulmonary doctor told me at the most recent appointment that Robert’s muscle weakness we see in his legs isn’t just in his legs but is most likely indicative of increased weakness everywhere – lungs included.  This lung doctor, who also works regularly in the ICU and sees plenty of pneumonia and end-of-life situations, gently broached the topic of Robert’s susceptibility to pneumonia and how eventually he may not recover. He told me we need to think about whether or not Robert wants to be on a ventilator when it comes to that.  

This doctor said the next time Robert gets pneumonia, they will use a scope to get a tissue sample of the infected area and target antibiotics for that organism. He even said he could then prescribe antibiotics for us to have at home when an infection first appears so we can cut down on the hospitalizations.

These scenarios were “when” not “if.”

It doesn’t help treatment now or in the future that Robert is already resistant to some antibiotics. When Robert has a persistent cough I don’t want him automatically put on antibiotics unless there is an indication of a bacterial infection. Neither do his doctors.  I want those antibiotics to work when we really need them!

There seem to be a lot of physical changes in Robert and they seem to be coming quickly.  I log everything (and I mean everything – daily vitals, seizures, behavior) so this is not just me imagining things.  Sometimes I wonder if maybe things haven’t changed and it is me obsessing and imagining.  After all, I thought Robert was declining last year, too, but Other Brother didn’t see much of a change and he doesn’t see him as often as I do. 

Then I look at the log and realize that the amount of seizures has increased. His cluster seizures are more frequent. Hallucinations are new. Coughing is continuous. There is a huge spike in entries about his sour mood.

I go through a list of questions of what can be causing all of this:

Have I become complacent with his medications and not giving him the correct ones? I double, even triple check his weekly container. I double check the medications in the med cup before handing them to him.  No, meds are what he is supposed to be on.

Should the timing of the meds change?  No. I checked with his neurologist and he is happy with the timing of all of the medications.

Is he tired of me telling him to “hurry up” to get ready to catch the Day Program bus? I don’t think so. Why would he all of a sudden tire of his older sister nagging him when I’ve done it our whole lives?

Is he not sleeping well which can lead to increased seizures and a change in mood?  Quite possibly. His cough has been pretty bad lately (still, no sign of infection though). It’s quite a dilemma whether or not to control the cough: if I give him cough medicine to stop him from coughing then the gunk just sits in his chest germinating. If I let him cough it out (which is difficult for him to do since he tries to suppress his coughs) then it disturbs his sleep.

Sometimes I wish I was a doctor so I could know which one of my theories is crazy and which one is on the right track.

Yesterday Robert had four seizures between the morning and evening (not including any he might have had during Day Program which were missed) and uncontrolled coughing in the middle of the night.  I woke up at 2:30 in the morning to Robert yelling for me. Taz and I raced downstairs to find Robert soaked because he threw up while coughing.  Bedding changed, Robert cleaned up and changed and laundry started then back to bed for all of us.   

Bring on the coffee!

Sometimes I wonder if I am too focused on the future and trying to control what that looks like instead of focusing on now and managing the current symptoms and behavior. Worry about Robert getting pneumonia and not surviving in a year or two or five as the pulmonary doctor said is not going to do anyone any good. 

What helps me not worry is believing I am doing everything I can to manage his care to the best of my ability. I advocate for him, I work with the doctors knowing we are partners in Robert’s care and I keep him entertained with his favorite things: word search puzzles, Family Feud, Jeopardy and Wheel of Fortune.

What also helps is being grateful to those that help me through this caregiving experience. My husband, Richard, who deals with back pain and pain management issues quietly comes downstairs in the middle of the night to ask what he can do to help. My daughter makes me laugh every single time we talk. My best friend regularly joins me for Coffee with a Caregiver and listens to my concerns whenever I need her. I know that Other Brother is extremely generous and is only a phone call or email away (although texting at 5:00 a.m. is strongly discouraged).

My caregiving friends, who are going through their own struggles and time constraints and worries, find time to reach out and support not only me and Richard but our entire caregiving community. 

When things seem out of control and I have no idea what the future holds, gratitude is the rock that I hold on to.  I can’t control the future. I can’t control the seizures. I can’t control Robert’s next bout with pneumonia. 

I can control what I am grateful for and how often I remind myself of it.

Right now, I need that reminder; I need to hang on to those I am grateful for. I need that gratitude.

And another cup of coffee.  

A Day with a Caregiver: Updated for the #Blog4Care Carnival

Caring Across Generations is publishing a #Blog4Care Carnival at the end of March and I am thrilled to help them with their goal of showing what caregiving is like from all different perspectives.  This post opened my own eyes about a caregiving day from the perspective of a working caregiver. I am not special – I am one of millions of working caregivers who have days similar to this.

On this particular day, I was juggling taking Robert to a dental appointment and working from home.  

Richard and I recently participated in a project created by Denise Brown, founder of the non-profit CareGiving.com, Chris MacLellan, founder of ThePurpleJacket.com, and Rajiv Mehta, founder of Unfrazzle.

One of my favorite moments

It is easy enough to do: keep track of your caregiving day on a log provided by Denise and Raj.  Denise, Chris and Raj created the log and are asking caregivers to participate (there’s still time to do so – visit here for more information.) 

Before completing the log, I thought my caregiving day consisted of getting Robert ready for Day Program, laundry, making dinner, fostering a bond between Robert and Taz and keeping all of his medications straight (and in stock).  I wondered why I didn’t have time to write or why a trip to CVS for incontinence supplies seemed like a real treat. 

I wondered why I couldn’t write at 8:00 p.m. when I had a whole hour to wait until Robert’s last medication dose.  Instead, I was exhausted and wanted nothing more than to lie in bed and watch a brainless television show with my dogs and husband or play Words with Friends.

Okay, sometimes I plop into bed as early as 7:30 and, yes, my 20 year-old self is mocking me right now. Heck, I’m pretty sure my 40 year-old self would be appalled. 

I thought I must be doing something wrong; I know I have it easy compared to many other caregivers.  Maybe I need to be more organized. Maybe I need more checklists (as many of you know - my solution for everything).

The day I kept the log, I thought it was an atypical day.  After all, Robert wasn’t going to Day Program because of a dentist appointment and I was working from home after the appointment instead of going to the office.

Here’s an excerpt of my log (the actual log has more information to keep track of and also tracks an entire day):  

Time:               Activity:

5:30 a.m.:        Wake up; discuss Richard's night and how he slept;

5:40 a.m.:        Prepare water (add thickener); dispense meds; 

                       add antibiotic;

5:45 a.m.:        Turn off oxygen & humidifier; ask Robert to get up;

5:46 a.m.:        Put Robert’s word search book in his walker basket; 

                       put glasses & pens & calendar on kitchen table;

5:47 a.m.:        Notice Robert is having a seizure while still in bed; 

                       lasts 10 seconds; watch & wait;

5:47 a.m.:        Help Robert out of bed; watch him walk to the bathroom;

5:49 a.m.:        Remove wet bed pads and put in garbage;

5:51 a.m.:        Help Robert remove his shirt, pants, briefs; 

                       put wet clothes in washer and briefs in garbage; 

                       watch Robert sit on toilet;

                       remind him to use urinal guard; 

5:56 a.m.:        Remove wet sheet & blankets from bed; put in laundry room; 

                        load washer;

6:00 a.m.:        Ask Robert how he's doing in bathroom;

6:00 a.m.:        Write down earlier seizure in his seizure log;

6:00 a.m.:        Fold blanket that isn't wet; put away in closet; put foot & head wedges into garage;

6:10 a.m.:        See Robert standing up wiping himself; I tell him to throw away the TP and ask if he needs his rear-end wiped. He says he still needs to wipe his penis; I ask him to throw away the toilet paper; we have a discussion about what he needs and I ask him to sit down to wipe. He finishes wiping;

6:15 a.m.:        Warm up water for bath; lay towels on floor; put down bowl;

6:17 a.m.:        Wet washcloth and hand to Robert; he washes his face; I wash his hair; rinse his hair; get excess water off hair and he dries his face; prepare wet cloth for him to wash whole body; give to him;

6:25 a.m.:        Add thickener to water; give Robert medication;

6:26 a.m.:        Ask Robert to stand so I can wash his back; he has to go to the bathroom again; I hand him urinal guard;

6:28 a.m.:        Take out garbage;

6:35 a.m.:        Check on Robert; ask if he's done says he has to be wiped but is holding toilet paper; told him to throw that away; he continues to sit and then begins to wipe his eye because he says it's bothering him. I wipe his eye with a washcloth;

6:37 a.m.:        Ask Robert to stand so I can wash his back; I wash and then dry his back; spray body spray on him; give direction to put hand on counter and railing to sit down;

6:38 a.m.:        Give Robert his briefs, shoes and socks and insert pad into 

                        briefs;

6:39 a.m.:        Remove fitted sheet from mattress pad; roll up mattress pad and put out in the garage; put sheet in washer; put away sofa bed; check on Robert's progress dressing;

6:45 a.m.:        Help Robert put his briefs on;

6:46 a.m.:        Prepare jeans (put handkerchief in pocket; washcloth in other pocket; wallet, comb & fingernail clippers in pockets); add belt;

6:47 a.m.:        Check on Robert's progress; give him the jeans; help Robert 

                       put on his socks;

6:50 a.m.:        Give Robert choice of shirts (show him two, he picks one);

6:55 a.m.:        Check on Robert's progress; remind him about 

                       dentist appointment this morning;

6:56 a.m.:        Add thickener to water for next med dose; give Robert nasal spray; help him put on his shoes (I asked if he needed help, he said yes); offer to help with shirt and he declined offer;

7:05 a.m.:        Go upstairs to shower; Richard takes over watching Robert; I check/answer work emails;

7:35 a.m.:        Give Robert his medication;

7:36 a.m.:        Discuss changing pain doctors with Richard and the referral form I got for new doc;

7:40 a.m.:        Remind Robert he has a dentist appointment and needs to finish up breakfast; seems groggy and slurring words, falling asleep; seems "post-seizure" like;

7:45 a.m.:        Finish getting ready for the day (me);

8:00 a.m.:        Ask Robert if he wants to shave and brush his hair first and then brush his teeth. He says he does; I remind him of his dentist appointment and give him 10 minutes to shave and comb his hair;

8:05 a.m.:        Drink coffee that Richard made; check personal emails 

                       and texts;

8:10 a.m.:        Brush Robert's teeth; explain what to expect at the dentist;

8:20 a.m.:        Transfer clothes from washer to dryer; start another load in 

                       washer;

8:25 a.m.:        Put Robert's coat on; ask him to sit down for a minute; get his meds in the event of prolonged seizure while out;

8:30 a.m.:        Take Robert to the car; put him safely in; 

                        load walker in trunk;

8:40 a.m.:        Robert gets mad at me for rolling down the window when I am crossing a busy street. I explain to him the driver needs to do what they need to do for safety even if the passenger doesn't like it;

8:55 a.m.:        Arrive at dentist; walk Robert in and sit him in a lobby chair; ask him to keep his helmet on since they will call him back shortly;

9:00 a.m.:        Go out to the car to get the "car bag" in case of an accident;

9:05 a.m.:        Robert is called back; help him stand up; walk him back to the dental chair; put bed pad on chair in case of an accident; help him into chair; fold up walker, etc. and get out of the way;

9:10 a.m.;        Sit with Robert while he's getting work done; check/answer work emails as well as personal emails/texts;

10:20 a.m.:      Robert is finished; walk him to lobby and set him down;

                       I go pay;

10:30 a.m.:      Robert has accident in lobby (crap - no pad!); I take him to bathroom to change and clean up;

10:45 a.m.:      Apologize to dentist office and offer to pay for new chair or 

                       cleaning of chair;

10:46 a.m.:      Put Robert into car; put walker into trunk; look for dumpster for wet briefs/pads - 

                       no luck; put in the trunk and leave;

11:10 a.m.:      Stop for coffee!

11:15 a.m.:      At home - get Robert out of the car; his walker basket broke and I had to explain that to Robert since he was asking why it wasn't attached to his walker; walk him into the house;

11:20 a.m.:      Help Robert remove jacket; repack his car bag; 

                       start laundry with his wet clothes;

11:25 a.m.:      Notice Robert is pressing on himself which is a sign he needs to use the bathroom; I ask him if he needs to go to the bathroom and he agrees he does; help him up and into bathroom;

11:30 a.m.:      Put on gloves and take off one of the two briefs he's wearing because it is wet; replace the pad in the brief;

11:35 a.m.:      Robert is finished; wipe off bottom and hand him sanitizer wipe to wipe hands; take out the trash;

11:40 a.m.:      Take vitals because Robert is moving slow and seems groggy;

11:45 a.m.:      Check on Robert since he is shaving and brushing his hair;

11:50 a.m.:      Log onto computer - check personal emails; check news;

11:55 a.m.:      Help Robert out of bathroom; get him settled on couch; 

                       start TV show for him;

11:57 a.m.:      Fold bedding from dryer;

And that’s the morning . . .

After keeping track of all the activities in a caregiving day, I came to several realizations:

1. Tasks may only take a minute or two but, boy, do they add up and they are never-ending;
2. There is no typical day in caregiving.
3. No wonder I am exhausted!

Every day in caregiving is different. Sure, there might be some of the same tasks (like laundry and helping Robert clean up in the bathroom and keeping his razor charged) but every day is different.  Some days have doctor’s appointments, some days Robert is moving extra slow and some days he is returning home excitedly telling us about his Valentine’s Day haul of cards (“They’re all from girls!  They looove me!”).

Richard and I had a video chat with Denise and Raj and discussed doing the log and the realizations we came to after keeping track of the day.  Our conversation is below.

While talking with Denise and Raj, I realized that it doesn’t make sense to compare our day to someone else’s day.  What might be easy for someone else might not be easy for me. While I might have to do something one day, I might not have to another day.  My morning log seems like a lot to some and pretty easy to others.  There are days that the tasks really aren’t that much.

Every day is different.  Every caregiving situation is different, yet we can all learn from each other because much of what we feel is the same.

Doing the Caregiving Day log also made me realize I am going to be a little kinder to myself for not getting more done or writing more.  I am also going to cherish the times that I am actually able to find the time to write and am going to appreciate what I am able to get done.  I need to remind myself that we are all doing the very best we can.

Caregiving is in the details but also about the moments. There was a moment in the afternoon that Robert made me laugh and later in the day I was able to spend a few minutes watching Family Feud with him and laughed some more. Those are the moments I want to cherish when I look back on this time caring for Robert.

Tell me about your caregiving day in the comment section and, please, contact Denise to complete the Caregiving Day Log.