MS Caregivers

What a Difference a Year Makes!

A year ago, Jeanne was hospitalized.  She was admitted on July 31 with an infection.  While in the hospital, she fought through pneumonia, seizures, coma and, oh yeah...the infection she was admitted for.  There were times during her 6-week hospitalization when no one was really sure that Jeanne was coming back home.  But, as anyone who knows her can attest, Jeanne may be just 5'2" and a shade over 100 pounds, but she's tough. 

And so, with the exception of a week in the hospital around Christmas, Jeanne is still at home.  And she's still tough.  There are days when I wish I could take on some (or all) of her fight.  But that's Jeanne's path, and not the path that I'm on.  Instead, I try to make sure she's comfortable every day.  I make sure that we have all of the care-related "supplies" that we need to have on hand.  I make sure we're well-stocked when it comes to her meds.  I make sure that the TV in our bedroom is tuned to the sitcoms that she seems to be able to follow best.  And I sometimes find myself wishing that my list of 'caregiving chores" was considerably longer than this.  This is one of those days, where I feel myself wanting to do more for her, and then realize that there isn't more to be done.

And so I remember the last thing on my caregiving list.  I remember to smile.  Even when I don't always feel like it, it's the very least that I can do and the very least that Jeanne deserves.  Just like that infection that she had to deal with a year ago, a smile can be contagious, too.

Back to the Beach

Jeanne and I have been blessed to live on the beach in Playa del Rey.  We actually found our place eleven years ago, on the very day that Jeanne was diagnosed with secondary progressive MS.  When we first moved in, we did a lot of entertaining.  It never seemed difficult for friends to find their way to the beach.  Jeanne also took full advantage of our location to pursue some of her favorite pastimes -- bike riding (she used to ride 40 miles on the bike path every morning), walking in the sand and otherwise enjoying every aspect of living at the beach.  As she often shared with me, her love of the beach was the real reason that she moved to Los Angeles.

As Jeanne's MS symptoms progressed, her bike-riding eventually ended.  As did her walks in the sand.  And our entertaining.  Fewer friends found their way to our home, although the good ones never lost sight of the path that led to our door.  As Jeanne lost touch with the beach, so did I.  Sitting on our deck, looking out at the ocean, served to remind me that Jeanne was no longer able to share that experience with me.  And the mixture of sadness and guilt became powerful enough to drive me from the beach as well.  I still enjoyed the view from inside our home, but hadn't ventured out onto the sand for the past 2 years. 

That's recently changed.  Over the past several months, I've made a concerted effort to re-connect with my own quality of life.  Knowing that my quality of life influences my effectiveness as Jeanne's caregiver (as well as my overall effectiveness as a friend, neighbor, colleage, boss and member of my community), I've begun to do some of the things that serve to fill in the blanks in life.  I've taken that trip Las Vegas.  I followed that up with a brief business trip to San Francisco.  This past weekend, I attended a wonderful wine-tasting event and the other evening, I said "yes" when offered an invitation to a private screening of a soon-to-be-released movie.  This may not seem like major news, but this was the first movie I've seen outside of my home in almost 3 years.

But this post is about the beach.  And that's the other thing that I've re-discovered.  When we moved in 11 years ago, it was a move that was designed to benefit the both of us.   And recently, I've made my way back to the deck that's built right on the sand.  I've re-acquainted myself with the amazing and constantly changing seascape.  I've started to enjoy watching the weekly sailboat races out of Marina del Rey.  I've met some wonderful neighbors.  I've remembered why it was such a great idea to live here. 

As a result, I'm finding that I'm quicker to smile.  I'm more even-keeled in dealing with the minor frustrations that go along with being a caregiver.  I'm still there for Jeanne...perhaps moreso than before.  But I'm learning to do it without losing myself in the process.