Juggling, Teamwork and a Little Hope

My IT guy at work juggled three oranges at work the other day and made it look pretty easy.  (I then told him to get back to work.)  I have tried to learn to juggle but I am not quite coordinated enough. The juggling I do involves caregiving, medical appointments and various emergencies. 

Caregivers are experts at this type of juggling and sometimes even while we work. 

Thankfully, Richard helps with juggling our appointments.  We have a loose division of duties: he takes his mom to her appointments, I take Robert to his, Richard goes to his own and I go to my own.  (Hopefully, mine will be short-lived.  My MRI results came back normal(!) and I only have a follow-up with the neurologist. Then I’m crossing myself off the appointment list!)

Family!

We have pre- and post- surgery appointments, wound therapy, neurology, epileptologist, GP, pulmonary, ENT and cardiology appointments.  There’s pain specialists, physical therapy, lab work and x-rays when something is not quite right (like suspected pneumonia or artificial knee pain).

With the regular appointments and even ER visits or hospital stays we somehow manage to keep on track.  (It helps that Richard, Carol and I coordinate our calendars to be sure we all have the same information.) 

Sometimes we have to call in extra help, though.  Richard’s brothers, either Mark or Jim, will take Carol to her appointments if they conflict with one of Richard’s appointments.  Rach jumped in to take me to the ER so Richard and Carol could stay home with Robert and has stayed home with Robert while I pick up Richard from the hospital. Mark and Carol jumped in to help with Robert when he was sick and I needed to take Richard to get staples out of his leg.  

In other words, we juggle.

And we are very lucky. We are extremely fortunate to have the support of our families as I know many caregivers do not have that option. 

I am extraordinarily grateful to our family for their help and, while it is difficult for me to ask for help, sometimes I actually do it.

Robert has a VEEG (video EEG) coming up next week which requires him to be in the hospital for five days.  It also requires someone to be with him all the time.  As in, day and night.  To be clear, I am talking about all 24 hours in a day.  For a week.  And, we have to be alert and awake the whole time in order to push a button when he has a seizure.

I do tend to take on a lot but even I realize neither one of us can stay awake all week.  Heck, I don’t even think it would be possible for just me and Richard to do it.  (Although, that was our initial plan.)

I texted Other Brother for help.  I explained the situation, told him I was making a schedule and asked if he was able to come up to be with Robert for a shift.

“You mean like through the night?”

I know.  It’s a big ask.  It would be nice to have an extra relief person so Richard and I weren’t doing the whole week.

“How long are the shifts?  Are there any food or bathroom breaks?”

I gave him more info about how the whole thing works, logistically.  Of course, I am just going off of the booklet the hospital mailed us – I haven’t actually done this before so don’t know how it will actually go.  I mean, does the nurse come in and poke us if we accidentally doze off?  Does the guest chair trigger alarm bells if there’s no movement for a few minutes?  Or does it just spring us out of the chair to wake us up?

After ribbing him for all of his questions (as only an older sister can), Other Brother offered to take two of the overnights which was a huge help. I thanked him profusely!

“Can I take a laptop?”

Oh crap. I thought for sure this was a deal breaker. 

Um, no.  No laptops or phones.  We can’t have the signals interfering with the monitoring equipment.  I did suggest long bathroom breaks if he had to use his phone . . .

Carol and Robert share a special bond

I created a schedule for the three of us and sent it to Other Brother.  He reviewed it with his wife who suggested he stay in a hotel for a few days so he’s not driving back and forth on no sleep.   He can do his shift, sleep in the hotel, drive the hour or so back to home/work and then repeat it the next day. (Good thinking!)  Other Brother revised the schedule, adding another overnight shift for him with even longer hours.  What a wonderful surprise and such a huge help!

Carol is planning on holding down the home front and doing laundry and caring for the dogs while Richard and I take turns at the hospital and I try to go into work for an hour or two.  In fact, she feels ready to move back to her own home but is postponing it so she can help us out. (We wish she wouldn’t move home but that’s a different story.)  Rach and Matt are planning visits to the hospital to check on us and to the house to check on Grandma.  Mark even offered to take a shift but he recently started a new job and I don’t want him missing work on our account. 

We are very lucky indeed!

We all see the value in the VEEG and know how important it is for Robert to have this testing.  This is a step toward getting the Neuropace for Robert which seems to be a very promising treatment for him!  Robert’s new neurologist thinks he is a great candidate for the Neuropace and thinks this could significantly reduce his seizures.  If that happens, he might even be able to reduce some of his meds.  Can you imagine?! 

Everyone is willing to pitch in because we all see the possibilities of this new device.  We see the hope.  We see Robert’s fervent wish and prayer to be seizure-free as close to possible as we’ve been. 

This is truly a team effort of juggling to support each other.  That is what family is all about and I am so grateful. 

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.

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.