MS Caregivers

The View Changes

Three years ago, I had lunch with someone who had lost their wife to MS.  This very kind person was willing to share a variety of moments -- good and bad -- that he had spent with his wife toward the end of her life.  I came away from this very well-intended conversation in a state of shock.  I found myself horrified at some of the personal choices he had made.  I felt sure I would never wander down the same path.  After all,  based upon what I had just heard, I was just a hundred times more compassionate...more understanding...more of a caregiver than he ever was!  Or so I thought.

Here I am, three years later, making many of the same choices that my lunch companion had made.  Here I am, three years later, just beginning to appreciate the message that he tried to share with me that day.  Here I am, three years later, feeling as though I have more in common with him today than I did three years ago.  So what's changed?  Many things.  Jeanne is at a different point in the progression of her MS.  I have been a caregiver for 3 more years.  Most importantly, I think, I'm just at a different point in my journey as a caregiver and spouse.  And the view has changed.

As some of you read  my recent posts about whether or not I should plan a trip to Las Vegas, you may be thinking, "How can he even consider...?!"  You may be thinking, "What kind of a guy...?!"  All I can do is let you know that I completely understand how you're currently feeling...and maybe I even understand how some of you will feel one day...three years from today.  When the view has changed.

Vegas Part 2

In my last post I described the process by which many caregivers (including myself) end up sitting on the sidelines of life rather than stepping up and participating.  The recipe is one part difficult logistics, one part extra expense and an additional dose of guilt.  But it doesn't have to be that way...and I think we all know that it shouldn't be that way.  One of the fastest routes to caregiver burnout is to start living life as if you, too, are disabled.

And so the day after I posted about putting the invitation to Las Vegas in the I'll think about it tomorrow pile, I called the fine folks at Caesars Palace and told them that I would take them up on their invitation.  I reserved dates for both December and January.   Now, this doesn't guarantee that I will ultimately get there.  But taking action and making those reservations was a big step toward making it there. 

It's easy for caregivers to sometimes overlook caring for themselves.  Even when we know that can ultimately lead to being less of a caregiver to our loved ones.  Remembering not to become a second victim to MS is vital to your own well-being.  And sometimes, even if it doesn't feel exactly right, just taking action toward moving in that direction is, itself, a win.

Should I Stay or Should I Go?

Today, I received some interesting news in the mail.  It seems that Caesars Palace would like to offer me FREE accommodations for 2 nights in November, 2 nights in December and 2 nights in January.  No, I'm not a high roller.  And I've only been to Las Vegas once in the past 6 years.  But this post isn't about how or why the fine folks at Caesars Palace have chosen me to receive their offer.  It's about what happened when I stopped to consider their offer.

Step 1 -- Offer is received.  Free hotel room in Las Vegas sounds pretty good.

Step 2 -- I stop and think about whether I'd want to go to Vegas in November, and/or December and/or January.  Decide that December or January might be fun.

Step 3 -- Do a quick budget for the trip in my head.

Step 4 -- Consider Jeanne.  Things start to get tricky.  She isn't in shape to go to Las Vegas, and even if she went, Jeanne couldn't really do more than hang out in the hotel room -- which gets pretty claustrophobic if you can't leave for a while.

Step 5 -- Consider going without Jeanne.  First, the logistics -- who will care for Jeanne if I go to Las Vegas for 2 nights...and how much will it cost?  Jeanne's regular caregiver could handle her regular daytime shift.  I'd have to bring in another caregiver to cover the nights.  This would cost several hundred dollars.  Second, the guilt -- can I really go off to Vegas and have fun knowing that Jeanne is at home not having fun?

Step 6 -- The offer from Caeasars Palace is tossed aside...not exactly tossed out, but definitely in the "I'll think about it tomorrow" file.

And that's where too many plans get stalled out.  Somewhere between dealing with the extra logistics and expense and then balancing the guilt, it sometimes seems easier to stay put on the sidelines of life.  Even when I know that Jeanne is best served when I'm leading a well-balanced life.  And this is how caregivers sometimes head down the wrong path -- one that doesn't do them much good nor does it help the person that they are caring for.  And there's no easy way to avoid this path.  It takes vigilance, deliberate intention and discipline. 

So how do you navigate your way around this trap?  How do you, as a caregiver, stay connected to your own life while you are frequently overwhelmed by the life circumstances surrounding the person you are caring for?  Click on COMMENTS below and let us know how you do it!

Beat the odds

Yesterday, Parade magazine carried an article by author Gail Sheehy entitled, How Can We Help Our Nation's Caregivers?.  The article highlighted some of the more popular factoids about caregiving.

• Currently, there are about 44.5 million Americans providing at least 20 hours of caregiving support per week to a sick or disabled parent, grandparent, spouse or adult child.
• The typical caregiver is a 46 year-old woman who also holds down a full-time job.
• Over a lifetime, caregivers sacrifice an average of $500,000 in total income.

Beyond Ms. Sheehy's article, there are other statistics about caregivers out there.

• Nearly 60 percent of the clients of California’s Caregiver Resource Centers show clinical signs of depression.
• Caregivers who live with severely disabled care recipients are at particular risk of developing their own health problems and may be at increased risk for mortality.

So the "good" news is that caregivers are likely to lose a half-million dollars in lifetime earnings.  This is good news because the bad news is that caregivers are more than likely suffering from clinical depression.  And the really bad news is that being a caregiver can kill you.

So, what's a caregiver to do?  Pay attention to yourself!  It's the easiest thing to lose sight of, but it's important that we, as caregivers, not lose sight of our own needs.  Because if we do, it's likely we won't be of much help to anyone.  What can we do?  Watch for signs of depression -- withdrawal, unusual eating patterns, lack of energy or motivation -- you probably already know what they are!  What else can we do?  Make sure that we get that physical done every year so that we're monitoring our health.  Choose to eat wisely.  Recognize that self-medicating with alcohol, tobacco or recreational drugs will probably not help at all -- and will most likely make those troubling things in life appear even worse!

But most importantly, each of us can remember to talk to someone.  And I'm not necessarily thinking about a professionall, although they can be extremely helpful in allowing you to unburden yourself and feel less overwhelmed by the responsibilities you may be facing in your life.  In this case, I'm thinking about someone who has the time to listen and to care.  Someone who has the compassion to be interested in what you're doing and feeling.  Someone who may not understand exactly how you feel, but understands that how you feel goes a long way toward determining how you are.  And how you're going to be.

Take a moment and identify who that "someone" might be in your life.  It's taken me 10 years as a caregiver to find that someone in my life.  Because the truth is that none of us has to walk this road alone.  And if we are lucky enough to know someone who is ready to lessen our load, we may be able to look past some of those disturbing factoids and statistics, knowing that they don't have to apply to us.