MS Caregivers

100 Blogs By or About Someone with Multiple Sclerosis

Today I stumbled across Brain Cheese, a blog written by a 43 year-old woman with MS living in Seattle.  In this post, she links to 100 blogs by or about someone with MS.  I spent some time going through many of these blogs and found myself listening to 100 different voices each describing their own journey through MS.  It  reminded me of how unique MS really is...if you find 100 people with MS, you're likely to find 100 different sets of symptoms. 

Reading these blogs also reminded me of how unique each one of us is.  Some of the blogs reflected the writer's depression.  Others reflected their optimism.  Some blogs reflected the fear faced by those newly diagnosed while others reflected the unwavering bravery in the face of challenges as written by those who have lived with MS for many years.

Be sure to visit Brain Cheese and scan the list of MS blogs...and remember that these 100 are only the tip of the iceberg.  There are many, many more available to you.  As you read some of these blogs, you'll identify with everything the writer is going through.  As you read others, you may find yourself feeling envious toward someone's near-invisible set of MS symptoms.  Still other blogs will make you feel as though you're the fortunate one.  And this could be the very best example of the power of the Internet to connect people across geographic boundaries, across oceans and time zones...to allow us to find a sense of community even as we labor alone. 

While each of these blogs may have its own voice and its own perspective, they all share one message in common.  We're not alone.

Working Without a Net

Lately, the days and nights seem to blur together.  Since Jeanne was discharged from the hospital in early September, our lives have changed in many different ways.  First, there was the conversion of our bedroom into a one-patient clinic, complete with hospital bed, suction devices, IV stand -- even the regular and ongoing appearance of a RN to make sure that Jeanne's recovery continues down the right path.  Then there was the increase in the amount of daily care that Jeanne requires.  Whether it's her feeding tube feedings, her meds, keeping her hydrated, turning her position in bed, keeping up with the meticulousness of her wound care...or whatever...it's meant the addition of a second caregiver on weekends.  It's also meant that my duties as her night-time caregiver have increased dramatically.  But, as they say on those late-night TV infomercials,  "Wait!  There's more!".

To say that all of this has been an "adjustment" would be an understatement.  To say that all of this has added to the daily household workload and increased our out-of-pocket expense while significantly upping the emotional toll I try my best to deal with would be telling you the truth.  So...what more could happen?  What's left?  Drama at my job.  For the past couple of years I've been part of the management team at a residential real estate company on the Westside of Los Angeles.  Needless to say, the real estate market has gone through some difficult changes over the past few months that have left companies like ours wondering how to best move forward in a very different consumer market than the one we've been facing for the past decade.

                            (Stay Tuned...this really does relate to caregiving!) 

For the first time, I found that my ideas on how best to respond to this challenging market were decidedly different from those belonging to the owner of our company.  We did agree on one important principle...and that was that a management team must be in alignment if it's to be successful.  So...I needed to answer a difficult question.  Was I willing to cast my business perspective aside and go along with the program to maintain my job security?  Especially in light of all of those "adjustments" I was making at home -- and the financial requirements of maintaining Jeanne's care?

Common sense told me the answer was "Yes!".  It's hard enough being a single income-earner in a dual-income society.  How could I jeopardize so much?  My own answer differed from that of my pal, Common Sense.  My own answer was that the workplace was the last arena left to me to fight my own battles unencumbered from the financial, logistical and emotional obstacles that I routinely dealt with at home.  My job was a place that I could still score major "wins"...and I wasn't willing to exit this last arena and have my "job" join other parts of my life that already had limited chances of having a successful outcome.

So I stuck to my philosophical guns, and left my job.  I haven't told Jeanne yet...it's a bit of dishonesty in the name of kindness.  She doesn't need one more thing to worry about.  But I'm incredibly excited.  I'm excited to be working on a new business model in the real estate industry -- one that I believe will empower home buyers and sellers and provide a real market response to the chaos that exists today.  But I'm most excited that I didn't go along to get along...that I didn't sell out my best judgement for the sake of a paycheck.  I'm excited that I kept the business arena as my own field of dreams.  And I know that all of that positive mojo makes me a better caregiver.

I started this post by saying how lately, the days and nights seem to blur together.  Initially, this condition was caused by re-adjusting to Jeanne's greater needs.  Lately, it's been fueled by high energy and enthusiasm as I search out a "win" on my own terms.

Heading into the Holidays

There's something about being in the second-half of October that tends to remind me that the holiday season is right around the corner...even if it is 75 degrees and sunny as I write this.  Up until just a few years ago, the very thought of planning a Thanksgiving dinner, penciling out a guest list for our Christmas party or strategizing a holiday gift list for Jeanne would have quickened my step and put a smile on my face.  The winter holidays were my favorite time of year.  Even my own birthday gets dropped into the mix, occurring just a week before Christmas.  It's such a great time of year that even business seemed to slow down so that I would have enough time to enjoy each day, each occasion, each celebration.

But things have changed as Jeanne's MS has progressed.  I've gone from preparing "day of" and even "day after" Thanksgiving feasts for 8-10 people to preparing "easy to swallow" dinners just for Jeanne and me to not preparing anything at all -- and I'm someone who used to love to cook.   But last year, Jeanne slept much of Thanksgiving day.  Our annual Christmas party is a memory.  And if I don't let Jeanne know that it's Christmas morning or my birthday, then she'll never even miss them.

So how does a caregiver best celebrate the holidays?  My head tells me the answer is, "With close friends."  My heart argues, "So off you'll go to enjoy yourself while your wife can't?"    I know the right answer here, but it isn't easy to get past the guilt.  If you check my previous posts about "whither or not Las Vegas?"  you'll quickly come to realize that this is a recurring theme for me (and other caregivers).  Guilt is an all too familiar visitor to my world.  One that takes up its position just inside my front door so that it's there to trip me up as I try to leave...try to stay connected to the outside world and to the people who care about me. 

So how does a caregiver best celebrate the holidays?  Over the next couple of months, we have the opportunity to explore this question...to compare our answers and ideas...to reconcile the idea that being a great caregiver means always remembering to take care of yourself.  We have a couple of months to displace that un-invited visitor lurking just inside my front door.  Whaddya say?

Battle of the Sexes: Who Makes a Better Caregiver?

Yesterday I found myself in the midst of a really intresting conversation with another caregiver.  I commented to her that most of my close friends are now women.  And I shared with her the reason why I thought that was the case.  Simply put, I think that women know how to "show up" for each other much better than men.

My unofficial observation is that when something important happens in a woman's life -- whether it's good or bad -- one of the first things that happens is that she gathers her support network around her and seeks their help and advice.  When something important impacts a man's life, we like to "step up" and shoulder things on our own.  In fact, men often see asking for help as a sign of weakness. 

Now apply these two behavioral types to caregiving in general and caregiving for someone with MS in particular.  When women are thrust into the role of caregiver, they naturally reach out and leverage their pre-existing support network of other women.  And the other women that they reach out to have already been socialized to provide the necessary support and assistance.  When men find themselves filling the role of a caregiver, they don't necessarily know what to do or where to turn.  And they are reluctant to ask for help (just like asking for driving directions, right?).  So what happens?  Men get lost in their cars and overwhelmed as caregivers.  And this is particularly unfortunate for the MS community because 3/4 of the people diagnosed with MS are women.  Leaving their spouses or significant others (read that as "MEN" most of the time) to become their caregivers.  Could this be why a significant percentage of husbands end up leaving their wives once they've been diagnosed with MS?  If so, it's also a great opportunity to proactively get the word out to men that anyone can learn to become a great caregiver.  But no one succeeds on their own.

So what about all of those female friends I've cultivated?  I think it has something to do with their natural tendency to want to help and lend support.  Even if it isn't one of their girlfriends who's asking for it.