MS Caregivers

It's Your Chance to Step Up!

If you're reading this, your world has already been touched by the National MS Society.  Even if the person with MS in your life hasn't availed themselves of the many outstanding programs that the MS Society offers, the Southern California Chapter of the National MS Society sponsors this blog.  And so, as previously stated, your world has already been touched by the untiring dedication of the amazing people in this organization.

And this is our opportunity to pay back some of their support.  This April 6th, I'll be leading a team in WALK MS at the Rose Bowl in Pasadena.  WALK MS is the major fundraising event for the National MS Society and this is my personal plea for your help in making this year's event a success.  If you check around your favorite media, you'll find that the current economic climate in the United States is not particularly conducive to fundraising.  Charities across the country are feeling the pinch.  And that's why I need your help...because none of us can afford not to have the National MS Society in a position to do all of the wonderful things that it does every day.  From creating new programs to funding cutting-edge research, the National MS Society has truly been a life-saver for my family and so many others.

If you're in the Los Angeles area, you're invited to join my WALK MS team, Strum's Striders, and help us raise money.  If you're out of the area, you're invited to support our team by making a donation.  Either way, you're doing something that you or your loved one will directly benefit from.  So, to all of you anonymous lurkers who read but don't leave your comments on this blog, please take a moment and lose that anonymity just long enough to support this important cause.

Join me on April 6th as I walk for my wife Jeanne because she, and hundreds of thousands like her, can no longer walk for themselves.  And please donate generously.  I wouldn't beg for your money if it wasn't such an important cause.

Sometimes It's About Tough Choices

The Spring 2008 issue of Momentum (the magazine of the National Multiple Sclerosis Society) carries this letter to the editor:

"I am insulted and near tears about Jack's story in "Through Thick & Thin" (Winter 07-08).  I have no problem with his taking a trip to see family in Europe, but it sounds like there was no mutual discussion.  "I made the tough decision to put Vel in a nursing home" is so demeaning.  Jack had all the power.  Vel had none.  We deserve better than that."

This letter struck a nerve, so I read the original article the letter-writer referenced.  In short, Jack, a 68 year-old retiree, is the primary caregiver for his wife, Vel, who is unable to leave her bed.  Jack bathes Vel, administers her meds, arranges all of her medical appointments and handles all of the household chores as well.  Vel is also dealing with cognitive impairment, which has left Jack feeling lonely and isolated.

If you were to subtract about 20 years, Jack and I have an awful lot in common.  And so I feel somewhat entitled to my opinion here.  Most of us know that if you line up 10 people with MS, you'll find 10 different sets of symptoms.  And because the disease is progressive, there's a wide variance in just how profoundly people are affected by MS.  In its earliest stages, people don't even know that they have MS.  Should it progress to the point that it has for Vel and my wife Jeanne, it seriously affects every aspect of their lives.  What's most clear to me about the letter-writer who is feeling "insulted and near tears" is that they haven't traveled as far down the road of disease progression as Jack's wife has.  I pray they never will.

Whether Jack knows it or not, it's vital for him to take that trip to Europe.  Caregiver burnout isn't something that we talk about often, but it is a huge issue for people in situations similar to Jack and Vel.  If Jack doesn't take care of himself -- if he doesn't stop to do things for Jack -- he runs the risk of burning out and ending up clinically depressed and of no help to his wife.  And then we have a household with 2 victims of MS and NO able caregiver!  And that's infinitely worse.

Our letter-writer points out that, "Jack had all the power.  Vel had none."  I'm sure that Jack would trade that arrangement in a heartbeat if he could, but when your loved one is suffering from congnitive impairment, it's dangerous to give them an equal vote in matters -- even if you're desperate for those times when the two of you could make mutual decisions about the future.

We've all heard that "MS affects families."  This is another example of how, in making a decision to maintain their own sense of self, caregivers are sometimes forced to make decisions that may seem cold and uncaring toward their loved one.  I'd urge folks like our letter-writer to walk a mile in Jack's shoes...but hopefully, she'll never have to.  Instead, I'll urge her to refrain from passing judgement on life circumstances that she may not fully understand. 

Our letter-writer ends by pleading, "We deserve better..."  What Vel deserves most is to have Jack at her side, making her as comfortable as possible for as long as possible.  In order for Jack to do that, he can't lose himself in the process.

Have You Called the MS Society Lately?

We all know that the National MS Society helps people with MS...right?  Only partially.  Because MS affects families, the MS Society has any number of programs and benefits designed to help those of us who help our loved ones through this disease.  But that's a detail that's easily forgotten. 

A few days ago, I had a business opportunity present itself -- but it required that I fly (from Los Angeles) to Atlanta on short notice.  Last minute travel plans typically involve countless logistical details, but for me, one very large detail was, "Who will be home to help Jeanne?"  One of the wonderful benefits offered by the Southern California Chapter of the National MS Society is a caregivers respite program that provides up to 6 days of home care for your loved one while you are off doing...whatever.  Including going to Atlanta for a series of important business meetings.

As it turned out, the trip to Atlanta wasn't necessary.  But knowing that the MS Society was there to make it possible made me feel great -- even though I didn't even take advantage of the program this time!  You may be surpirsed at the incredible breadth of support programs available to families dealing with MS.  Contact your local chapter of the National MS Society to discover what you might be missing!

Medicare -- The Next Chapter

In my last post, I went into near-painful detail describing the various daily personal care tasks for which Jeanne required assistance.  Everything from feeding tube feedings and receiving her meds 4 times a day to being turned in her hospital bed every two hours.  Based upon these needs, the Medicare Gods have smiled upon us and deigned that she receive personal care assistance. 

The specific assistance Jeanne will receive?  Someone will come to our home three times a week to bathe her.  That's it.

Medications?  Nutrition?  Turning her to avoid bed sores (these can be fatal to someone in Jeanne's condition)?  Nope.  She's on her own there.  But stopping by to give her a mini-spa treatment?  We're covered.

It's not that I'm not appreciative of the help.  And I know that Jeanne will enjoy the pampering.  But how in the world do the Medicare Powers That Be make choices based upon some set of health care priorities where THIS is what gets covered at the expense of all else???

And so my Great Medicare Coverage Experiment comes to an end.  And the outcome?  Too strange to characterize.