MS Caregivers

The MS Rollercoaster

If you check my last post, you'll see that it was written less than a week ago and that Jeanne was doing incredibly well compared to her normal baseline.  But that was then.  Yesterday, Jeanne awoke with a temperature of 104.5, and we ended up at the Long Beach Memorial emergency room.  Today, I'm writing this post from Jeanne's hospital room.  What a perfect illustration of the rollercoaster that so many families are on as they strive to deal with the unpredictability of multiple sclerosis.

When you look at other neurological illnesses, like Alzheimer's or Parkinson's Disease, you find patients and their families struggling against serious symptoms.  But at least they can predict with some certainty what those symptoms are likely to be.  If you meet 10 people with MS, you are likely to find 10 different sets of symptoms.  You're likely to find 10 different rates of progression.  And you're likely to find 10 other families all on the same MS rollercoaster.

Jeanne is doing a bit better today than yesterday.  Once her lab work comes back, we should have a clear idea of what sort of infection she is fighting.  We'll feel some relief.  And we'll wait for the rollercoaster to take its next sharp turn.

The Happiest New Year

This past Saturday morning I walked into Hillcrest Care Center for my daily visit with Jeanne.  Kia, her nurse, passed me in the hallway and remarked, "She's in rare form today!".  And that, I found, was an understatement.

I arrived at Jeanne's room to find her enjoing some old school R&B music on the radio.  Now, I love R&B...in fact, I love music in general, but R&B in particular.  Jeanne, on the other hand, could always take or leave music -- and she was never a fan of R&B.  Until that very moment.  Because there she was, with the biggest smile on her face, telling me how much she was enjoying the music.

That moment stretched into an entire day.  We never turned on the TV.  But the radio kept playing one great song after another.  And Jeanne's disposition became contagious.  By Saturday afternoon, Jeanne's hospital bed was surrounded by three nurses -- all smiling, singing and dancing to the music.  And Jeanne was in the center of it all, smiling and moving more parts of her body than I have seen her move in over two years!

When I came back to visit Jeanne on Sunday, it was more of the same.  I don't know where it all came from, or how it happened, but I can honestly say that Jeanne enjoyed the best two days that I've seen her experience in the past 3 years.  And I enjoyed them right along with her.

Living with MS isn't easy.  Especially when you've seen it progress as it has in Jeanne's case.  But the joy found in moments like those that I experienced this past weekend is indescribable.  I hope your new year started out half as happy as mine did.

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.