MS Caregivers

My Traveling Surcharge

American Airlines is suffering the wrath of the traveling public because they have initiated a surcharge on the first bag you check on one of their aircraft.  The surcharge increases with the second and third bags, but by imposing a charge on the first bag, they have effectively imposed a charge on almost everyone who chooses to fly American.  And, it turns out, people don't like paying extra charges.  Welcome to my world.

It seems as though caregivers (at least this caregiver) have been paying stiff "surcharges" for a very long time and for a wide variety of activities.  You'd like to invite me to a barbecue?  That sounds great!  Just let me "get someone" to be with Jeanne while I'm gone.  You have an extra ticket to that sold-out USC football game?  I'd love to!  Let me "line someone up" for Jeanne first.  Bottom line -- caregivers are used to paying the "surcharge" in life.  Sometimes I pay it, and sometimes I have to pass on the invitation or opportunity.

Our "circle of support" is more limited than others.  And Jeanne now requires trained, specialized care.  So in our case, there aren't any friends or family members available to help out.  That means that I end up hiring a qualified, certified, bonded someone through an agency.  I don't have a complaint with the caregivers that I hire.  But it's a financial hit that usually serves to mitigate an otherwise "good time."

This is top of mind today because I'm making the final preparations for my trip to Las Vegas next week.  If you've been following this saga, then you know that my hotel room is being "comped."  So the only expenses that I need to really consider are transportation, food and gambling.  Food and gambling are easily controllable expenses.  Driving or flying to Las Vegas from Los Angeles is about a push.  But the one additional expense that I have to stop and consider is the hundreds of dollars that I'll spend to make sure that Jeanne is "covered" for the 3 days that I'm gone.  It's the single biggest expense associated with this trip.  That makes for quite a surcharge.

It's strange -- of all of the expenses associated with caring for Jeanne, this is the one that stands out in my mind and just rubs me the wrong way.  And please don't misunderstand, caring for Jeanne is the single best part of my world.  But this feels like it's about something else.  Maybe I'm like all of those fliers on American Airlines.  No matter how great, how much fun or how important the destination, nobody likes to get arbitrarily dinged with an extra charge.

Farewell to a Friend

Since Jeanne's MS diagnosis in 1997, she and I have benefited in a multitude of ways from the programs and services (and more indirectly from the research) provided by the Southern California Chapter of the National MS Society.  To say that the Southern California Chapter is a central part of our lives would not be overstating things.  This blog itself exists because someone in the Southern California Chapter thought that it could be important to reach out to the caregivers of those with MS using a new medium.

Well, today's regularly-scheduled blog post has been pre-empted by some sad news that we've just received.  Janelle Del Carlo, the Chapter's Executive Vice-President, Fundraising, is re-locating to Northern California and the Bay area's gain will certainly be our loss.  Janelle has provided energy, enthusiasm, major effort and support to the organization over the past 14 years, and her presence will be missed by the entire Southern California MS community.  A community that is better off thanks to Janelle's tireless dedication and drive.

Both Jeanne and I want to take this opportunity to wish Janelle and her husband Keith Brandt the very best of luck in all of their future endeavors.  Aloha.

Las Vegas...solved!

Last week, I was dealing with a bad case of the what ifs.  What if I take this trip to Las Vegas, and Jeanne's feeding tube pops out again?  What if I can't get back to Los Angeles for hours and she has no way to take her meds or nutrition?  What if she dehydrates because I had the need to lounge pool-side in the desert?  The mind is an amazing thing.  These all sound like perfectly reasonable questions.  But they aren't.  They are no more reasonable than someone in a perfectly healthy household asking, "What if my spouse is run over by a bus today?  What if my spouse has lunch at their favorite restaurant and gets a sandwich with one of those tomatoes carrying salmonella?  What if my spouse takes great care of themselves and, in spite of it all, is diagnosed with a chronic illness like MS?

Let's face it.  We can all find great reasons for spending the day hiding under the bed.  Whether we're caregivers or not.  But life is to be lived.  And so we decide that while anything can happen, most things won't.  And when they do, we find ways to deal with them.  But none of us can afford to put life on hold in an effort to inoculate ourselves from all of the real and perceived threats that may or may not exist. 

And so this is my last post about the upcoming Las Vegas trip.  It's scheduled to take place at the end of this month.  And I'm going.  I'm going because a change of scene is healthy.  A change in my daily level of responsibility is healthy.  And I haven't allowed myself to take some time off for me in longer than I can remember.

But that's me.  To all of the caregivers reading this post, what will you do to take care of the caregiver?

Life's What Happens To You...

It's ironic that as soon as I announce that I'm going to focus on "caring for the caregiver", life explodes all around me and keeps me from my faithful posting.  Fear not, the distractions are now under better control and I will return to getting my posts up on a regular basis.

The good news is that most of life's distractions have not involved Jeanne's condition.  For the most part.  This past Monday, as I readied myself to give Jeanne her mid-day meds, I noticed that her feeding tube had popped out.  Not a good thing.  And so it was off to UCLA Medical Center for the day...in order to receive about 30 minutes of actual treatment when they put in a new feeding tube.  Having lots of time on my hands, I was reminded of John Lennon's wise words -- "life's what happens to you while you're busy making other plans."  I think that any family dealing with chronic illness knows how true this is.

The following day, Jeanne had to deal with some after-effects of her treatment.  It wasn't a great day for her, but she's a fighter.  By Wednesday, all was quiet once again.

If you've been following this narrative for a while, you already know that I continually struggle to find time for myself.  And there's this 3-day trip to Las Vegas that's supposed to happen at the end of this month.  It's been postponed many times before.  I felt really committed to going this time.  And then Jeanne's feeding tube popped out.  And as we waited (and waited and waited and waited) in the Emergency Room, I had to ask myself, "What would happen if her feeding tube popped out while you were poolside in Las Vegas?"  And those familiar pangs of guilt began to rise in my gut.  And now I'm locked in this internal debate -- knowing that the healthiest thing in the world is for me to still make that trip, yet not feeling all that great about it. 

So as of right now, the trip is still on.  But I can'say I'm looking forward to it with unbridled enthusiasm.  Stay tuned.

Caring for the Caregiver -- Pt 1

I'm starting an occasional series of posts called Caring for the Caregiver.  Welcome to Part 1.  I'm doing this for a variety of reasons:

1. Caregivers find it too easy to overlook themselves.
2. Caregivers need to have strategies and tactics at hand to combat caregiver burnout.
3. The everday stresses of being a caregiver work against us.  We need to find offsetting tactics.
4. It's something that I need to work on -- and blogging through this will help me do that.

Being a caregiver can be financially, emotionally, mentally and physically taxing.  The easiest thing in the world for a caregiver to do is to forget to take care of themselves.  This invites real danger.  Caregiver burnout is a popular outcome but it's not the only outcome.  Stress affects our immune systems.  A compromised immune system leaves a caregiver susceptible to all kinds of illnesses.  And once a caregiver is sick, the caregiving needs have doubled...without a replacement caregiver in sight.  Which causes more stress...and, well, you get the idea.  It's a viscious cycle that is best avoided.

So we have to eat smart.  We have to exercise...not only for the short-term benefits of those endorphins being released, but also because regular exercise contributes to our overall health.  We have to make time for ourselves.  A little time every day and even a few days of respite every so often.  If any of this sounds too self-indulgent, don't believe it for a second.  Without paying attention to these important steps, your caregiving days will be numbered.  And then what?

I've started to exercise a lot more regularly.  Like anything else, this is made a lot easier if you can do it with a friend.  I'm working on carving out some "me" time each day.  And I'm taking that trip to Las Vegas that I've been hoping or not hoping to take for the past 10 months.  My plan is to go for 3 days toward the end of June.  I've had the reservations for a while...but I've cancelled reservations before.  This time I'm going.  Because I deserve it and because it's important.  It will make me a better caregiver.

I'll be returning to this topic periodically over the next 60-90 days.  It's not a topic that I've spent a lot of time blogging about before because it remains a challenge for me, as it does for many other caregivers.  But I know that I can't possibly be there for Jeanne if I lose myself in the process. 

Celebrating A Better Day

It's been a difficult couple of days.  Jeanne has had some above-the-norm cognitive challenges and of all of the symptoms that MS brings, the dulling of Jeanne's cognitive skills are the most difficult for me to deal with.  I think it's because there's no physical clue that anything is "off."  But spending just a few minutes talking with Jeanne made it clear that there was a change in how she was processing things...or not processing things.

During one of these "events", my mind tends to fill with a million questions.  Will she be like this more often?  Is this a preview of the next stage of progression?  Questions for which there are no useful answers.  Nor does it really matter.  You can get into a lot of trouble attempting to predict the future.  True in the stock market.  Equally true in our house.

The good news is that today Jeanne is doing better.  Less confusion.  Lots more sleep.  Between increased sleeping and losing her grasp of reality, you know which condition I'm voting for.  And so I'm content to silence the questions and stay in the present with Jeanne.  Because today is a better day.

Our Bon Voyage

Our first order of business is my absence from this blog over the past couple of weeks.  Every so often, the various bits and pieces of my life conspire to present me with projects/tasks/stuff that needs to get done.  This has been one of those times.  The good news is that none of the projects/tasks/stuff had to do with Jeanne's MS.  The bad news is that these other areas of life have kept me from posting regularly, and for that I apologize.  Mea culpa.

I got a phone call today from one of my closest friends.  He had just returned from a trip to Paris and he gave me a quick rundown of his activities.  Shopping on the Champs-Elysee, dining in a Michelin 3-star restuarant, visiting Versailles for the day...just hanging out passing the time at one of the great neighborhood bistros that populate Paris.

As I listened to my friend, I couldn't help but think about the trip to Paris that Jeanne and I were fortunate enough to take.  Jeanne was diagnosed with MS in 1997.  At the time of her diagnosis, we were told she had "secondary-progressive" MS.  As I quickly tried to learn as much as I could about MS, I realized that this diagnosis was one of those good news/bad news things.  The good news was that during the "relapsing-remitting" phase, Jeanne's relapses were so minor and separated by so much time that she never knew that she was sick.  The bad news was that given her "secondary-progressive" status, Jeanne's symptoms were likely to progress more quickly now with less and less "bounce-back" afterward.  In other words, her disability was likely to increase.

At the time of her diagnosis, Jeanne and I had been married for six years.  There were still so many life experiences that I looked forward to sharing with her.  But as I observed the progression of Jeanne's symptoms, I became concerned that she might not be in the best position to enjoy some of these  experiences if we left them for later in life, as I had originally thought we would.  And so I made the decision to front-load our lives together with as many of these life experiences as I possibly could manage.  This wasn't a unanimously popular decision.  Jeanne's family, for one, felt that it would be more responsible for me to save our financial resources for the future rather than spending money on vacations.  I didn't agree with them at the time, but I understood their point of view.  Over the past several years, I've often reconsidered this particular decision of mine. 

In 2000, we flew to France.  We spent a week in Paris and then went on to experience the south of France.  In prior years, I had travelled almost constantly for business and I had accumulated hundreds of thousands of frequent flyer miles.  I was able to cash in something like 220,000 of these frequent flyer miles and arranged for us to fly First Class to France, complete with lobster for dinner & an almost-constant supply of Dom Piergnon champagne.  Rather than staying in a hotel, I arranged for us to stay on a deluxe barge on the River Seine.  The barge was owned by an ex-patriate American couple and they ran it as a very exclusive bed-and-breakfast.  They only accommodated one couple at a time, and while on the barge, your every wish and whim was catered to.

We enjoyed dinner at a Michelin 3-star restaurant.  With my assistance, Jeanne was able to walk down the Champs-Elysee.  We visited museums and galleries.  We saw the Eiffel Tower...although it was a small antique merry-go-round that we came upon across the street from the Eiffel Tower that seemed to captivate Jeanne's attention. 

As we moved our vacation to the south of France, we hung out at small cafes commanding magnificent views of the Mediterranean.  We walked through the Casino in Monte Carlo one evening, half-expecting to find James Bond playing baccarat.  The closest we came was stumbling upon Robert Wagner playing blackjack.  We had dinner under the stars in an incredible bistro.  We enjoyed every moment.

Could we have waited and taken this trip later than we did?  Yes...but we couldn't have waited for long.  Now, Jeanne is bed-bound.  Even wheelchair travel would not be practical for her today.  And if we could get to France, Jeanne would be much more limitd in what she could exprience there.  Her swallowing difficulties would have meant that we would not have shared some amazing meals together.  Her vision problems are to the point that she could not have appreciated the magnificent art that we saw at The Louvre and The Picasso Museum.  And while our barge accomodations were luxurious, they weren't close to being "accessible."  Our trip had to happen when it happened.  (I've found that truism works equally well for the rest of life, by the way)

Listening to my friend, I felt a bit of sadness as I acknowledged that the days of travel and discovery have passed for Jeanne and me.  But then I found myself smiling as I savored the memories of our trip.  Was it the right decision to go when we did?  Today, I finally know the answer.  It absolutely was.

WALK MS -- WE CAME, WE WALKED, WE CONQUERED

I spent yesterday morning in the company of thousands of participants at WALK MS 2008 at the Los Angeles Rose Bowl.  Families, friends, colleagues from work, classes from school, teams, church groups and every other iteration of "support" came together to Join the Movement, demonstrate their support and raise money for the ongoing fight against MS.

The common thread running through the crowd was that most everyone knew someone affected by MS.  This was illustrated by the high incidence of "I am walking because..." t-shirts that each told an individual story, even in only proclaiming someone's name.  Silent testimony was seen in the photos that people carried on their backs or attached to their signs.  And then there was the brave and unrelenting effort of those walkers who carried markers of the disease itself.  Imagine doing a 3-mile walk while using a walker or a wheelchair.  Yet each participant felt compelled to add their effort to the collective.  And in numbers, we all seemed to find power.  And the nightmare that is MS was beaten back yesterday by the determination of each of us.

I felt proud to be out among such a noble crowd.  Their courage became my courage.  Their determination fortified my determination.  Their spirit fueled my spirit.  And I left at the end of the event knowing that we are closer than ever to finding a cure for MS.  That's the power of a group.  Its collective voice can be louder than the sound of just one voice.  Its collective heart can be bigger and stronger than any one heart.  And its collective power can outshine the power of any individual. 

MS attacks individuals...but there's much to be gained in fighting back as a group.  It's too bad we can't all get together and walk every week or every month...but at the very least we can get together through venues like this blog.  By reading and sharing and commenting we can each benefit from our collective strength.  I'm up for it...and I hope you are too!

Look In the Book

I came across an excellent resource for those of us who are caregivers for someone with progressive MS.  It's a book published by the National Multiple Sclerosis Society called, "Caring for Loved Ones with Advanced MS: A Guide for Families".

If you were gong to gather all of the topics that caregivers need to understand (starting with the oft-overlooked topic of taking care of the caregiver!) you would end up with a book just like this one.  It's an amazing and complete resource that will assist any caregiver in finding answers to their questions, as well as prompting them to consider questions they may not yet be thinking about.

Contact your local chapter of the MS Society to find out how to get a copy of this excellent resource.  It deserves a place on every caregiver's bookshelf.

Tap Into the Wisdom of the Crowd

I came across a very cool web site called  PatientsLikeMe.  This site creates online communities for people with chronic illnesses, including a pretty vibrant MS community, with over 4,000 people with MS participating online.  There are forums, there is even an opportunity to provide a profile so that you can see what kinds of symptoms and treatments others are currently dealing with.  What's most interesting is that you can update your online profile as your symptoms and/or treatments change.  The site provides a chronological view that indicates the status of your MS over time.  It's definitely worth checking out.  And they even have forums for caregivers, as well!