MS Caregivers

A Reading Recommendation

Abigail Thomas's husband, Rich, stepped off a curb in Manhattan, got hit by a bus, shattered his skull, lost all short-term memory and was left with permanent brain trauma.  In A Three Dog Life, Ms. Thomas chronicles the funny, touching, every day and exceptional moments she has faced as Rich's caregiver.

Rich does not suffer from MS.  But Abigail deals with the kinds of issues that every caregiver can relate to.  Mega-Author Stephen King calls this book the best he's ever read.  If you'd like to treat yourself to a collection of essays that will reflect many aspects of the life you yourself may be leading, add A Three Dog Life to your reading list.

Jeanne Comes Home

I apologize for waiting a full week before posting something new.  But, as John Lennon wrote, "Life's what happens to you when you're busy making other plans."   And life has certainly been happening a lot around me lately.

In the interest of full disclosure, I should let you know that Jeanne was in the hospital (UCLA Medical Center) for 3 weeks until this past Thursday, 8/16.  She had become very symptomatic, and when her breathing became a bit labored, I contacted one of her doctors and they suggested I take her to the emergency room.  It was determined that Jeanne was suffering from a very serious infection and she was admitted to the hospital.  In treating her infection, doctors gave her such high doses of a very potent antibiotic (vancomycin) that she lost most of her kidney function and she eventually became non-responsive (how's that for being euphemistic?).  Just to make sure she had our attention, she proceeded to suffer a seizure.

After about 10 days in the hospital, Jeanne opened her eyes.  By then she had a NG tube down her throat, 3 IV lines, leads going to and from her heart and a partridge in a...but, I digress.  By this time, she had also added "hospital-aquired pneumonia" to her list of ailments.  Another 10 days of treatment seemed to tame the pneumonia, and her kidney function continued to return to her.  Meanwhile, Jeanne's white cell count indicated that the original infection that hospitalized her seemed to be getting better

When Jeanne's doctors began planning her discharge, they talked to me about putting her in a skilled nursing facility, as she still required a significant amount of care (3 antibiotics to be given by IV, blood to be drawn every few days, etc).  One of my long-standing promises to Jeanne has been that I would not allow her to be placed in a nursing facility.  No judgement here...just something she asked of me and I agreed to many years ago.  I convinced Jeanne's doctors that she could be discharged to our home -- provided I created a clinic-like environment.  So in came the hospital bed, IV stand, suction device, cases and cases of supplies...and a registered nurse that would be visiting every day to augment the care that Jeanne was receiving during the day by our full-time caregiver (a "Certified Nurse's Assistant") and at night by yours truly.

If you think it's taken a long time to read through this description of how things are at our house,   believe me when I tell you that living through it is a million times more complicated than reading through it.  And that's where I am right now.  Living through a situation that's so far from ideal on so many different levels that it makes my head spin.  The anxiety that I thought I was dealing with while Jeanne was hospitalized?  That was just a short coming attraction of the main event that I'm dealing with now.  Defining my role as Jeanne's caregiver?  Trying to manage my desire to give her everything she needs while remembering not to burn myself out in the process?  I'm still not very good at that.  Waking up from a night's sleep feeling more exhausted than I did when I closed my eyes?  It's become a daily occurance.

The good news?  I'm learning what faith and friendship really mean.  And to those of you who know me and Jeanne...who continue to selflessly demonstrate one or both of these all too elusive qualities that helps define our very humanity...I can never say "thank you" enough.

So that's my story tonight...but everyone has a story.  What's yours?  When have your limits as a caregiver been tested, and where did you reach down to get whatever it was that let you keep going one more day?

The Feeding Tube

For the past few years, Jeanne has suffered increasing weakness in her esaphogus.  This symptom makes it difficult for her to swallow and speak.  Because of her swallowing difficulty, Jeanne has relied on a diet of "thick liquids" (i.e., fortified milk shakes).  During this time we've tried, at all costs, to avoid the feeding tube.

Why?  Given Jeanne's difficulty swallowing, a feeding tube is a no-brainer kind of solution.  WIth a feeding tube, she can get the nutrition that she needs whether she physically feels up to swallowing a whole shake or not.  With a feeding tube, she can easily maintain her weight instead of continuing her weight loss into the danger zone (she's 5' 3" and currently weighs less than 100 pounds). 

So what's the problem?  Why the hesitation?  Why the fear?  I guess it's what that feeding tube represents.  Let's face it, no one gets put on a feeding tube because things are going well.  In the parlance of video games, when you get the feeding tube, you reach a new level in the progression of your MS.  And that's a scary proposition for Jeanne and me.  And when I realize that Jeanne's cognitive limitations will probably keep her from reacting one way or the other toward her feeding tube, then I realize that the fear is all mine.  It's not based on reason or logic...but is fear ever reasonable or logical?  It's simply one more in my face reminder that the progression of Jeanne's MS continues...it can't be slowed and she can't be saved.  And now, she qualifies for her very own feeding tube --- a dubious honor at best.

Jeanne had her feeding tube placed in her stomach yesterday.  The doctors are going to try it out today.  And one more piece of a frightening puzzle will fall into place.  "My wife is on a feeding tube."  All of a sudden, you don't need to know a thing about MS to know that this is probably not a good thing.  How do I best deal with this new development?  Well, because I do know a few things about Jeanne's condition, I know that she'd be dealing with many more health issues in the very near future without that feeding tube.  Given the alternatives, I find myself actually feeling glad that she has it.  And with that realization, years of chronic anxiety give way to a moment of total relief.   

My Story

Since her diagnosis in 1997, I've watched my wife's MS progress so fast that "progressive" doesn't seem to do it justice.  Sometimes I've thought the better diagnosis would have been "MS at break-neck speed".  Nonetheless, as Jeanne's situation has continued to change so has my role as her caregiver.   

Initially, I was Jeanne's fellow "battler of MS".  We dreamed and schemed and attempted to live life as though MS was some abstract notion and not the constant visitor it eventually became.  The next stage required that I be the "spouse who left no stone unturned."  If there was some lone medical researcher in a lab located thousands of miles from the nearest hint of civilization -- that poor researcher was getting an email from me...and a follow-up phone call...and whatever other form of communication was required to determine if the hope of a meaningful treatment for Jeanne was on the horizon.  And all the while, her disease still progressed. 

Now, my role is to make Jeanne as comfortable as possible.  Each day lends its own meaning to those responsibilities.  Even after 10 years, I still have moments when I find myself profoundly sad that I couldn't save Jeanne from her MS.  I remind myself that we can't really save anyone...as if remembering that does much good. 

I still get confused over what a caregiver's quality of life should be.  Do I live my life to the level of Jeanne's disabilities?  Do I have a right to happiness in spite of Jeanne's disabilities, as so many friends remind me?  The good news/bad news here is that I have lots of time to consider these questions.  While we are fortunate to have a live-in caregiver to stay with Jeanne and enable me to go to work each day, I become Jeanne's caregiver at 7:00PM each weekday and throughout each weekend.  Jeanne tends to nod off to sleep around 7:30, so I face most every night alone, our home providing a dark, still backdrop for me to consider the questions...feel the guilt...get in touch with the loneliness.  And, ultimately, find the strength and resolve to re-commit myself to providing the very best quality of life and never-flinching positive attitude for the amazing and most deserving woman asleep in our bedroom.

Now, some of you may have expected me to tell my story in terms of "the things I do" in the course of being a caregiver for my wife.  Brush her teeth...comb her hair...get her dressed.  But that's not my story...that's just the stuff that I do.  It's probably similar to the stuff most eveyrone else does.  As for my story -- come back often and read my posts.  That's my story -- imperfect moments and all.  Written and lived in real-time.

Meet Jeanne

It occurred to me that if I'm going to be sharing my random thoughts on being a caregiver for someone with MS, I should tell you a bit about that someone with MS.

My wife Jeanne was diagnosed with secondary progressive MS in 1997.  At that time, she was a working screenwriter (as in she got paid for her work) who loved to hike and bike.  In fact, she started every day by going on a 40 mile bike ride.  Jeanne earned her Masters Degree in Community Medicine from the University of Rochester.  Born in New Jersey, she moved to Los Angeles in the mid 1980's.  Almost immediately after her arrival in L.A., Jeanne appeared on Wheel of Fortune and was the week's big winner -- trips, a car, furniture, jewelry -- she definitely knew how to spin that wheel!  We met in 1988 and were married in 1991.

In 1997, at the time of her diagnosis, Jeanne's only symptom was a mild tremor in the pinky of her right hand.  We noticed it one day as she was holding a cup of coffee.  Over time, that tiny tremor spread to both hands, arms and her head.  The muscle fatigue that accompanies MS is most pronounced in Jeanne's esaphogus, making swallowing a difficult challenge for her.  This same muscle fatigue has made speech difficult for Jeanne as well.  As is often the case for people battling MS, Jeanne has vision problems and also suffers from depression.  For the past year, she has begun to deal with the cognitive issues that can accompany MS, including having difficulty with her short-term memory.  Jeanne is no longer ambulatory, and the woman who used to bike 40 miles a day is now limited to a wheelchair.

Because of her specific set of symptoms, Jeanne requires assistance with most every single day-to-day task you can think of including brushing her teeth, getting dressed, feeding herself, using a telephone, remote control or a computer.  Her vision problems don't allow her to read and her tremor requires that someone "pilot" her wheelchair for her.

So now you've met my special someone with MS.  Next, you'll meet me.

Describing the challenges of being a caregiver

In a comment about yesterday's post, Mike Mullich writes, "As I sit here tonight, trying to think about what to write, how do you put into words the "challenges" of being a "care giver"? How do you describe the "tricks" of keeping your sanity or of "sticking to it?"

These are big questions.   Important questions.   We live in a world where people often claim their entire identities based upon what they do.  And no one ever sets out to be a caregiver, right?  So how do you put into words the challenges of being a caregiver?  Maybe you don't.  Because the people who are caregivers already know all too well about those challenges and the people who aren't caregivers never will -- no matter how you try to explain it all.

The trick of keeping your sanity?   That sometimes feels to me more like a mystery than a trick.  But I've found that it's easiest to keep my sanity when I allow myself to be surrounded by the loving and supportive people that I'm lucky enough to have in my life.  What I've discovered (disclaimer: what works for me may not work for you, or as they say in the automotive industry, "Your mileage may vary.") is that people don't necessarily have to fully understand all that you go through as a caregiver, yet they can still be incredibly supportive.  They can still show you that they care for you, or at the very least, as a friend said to me yesterday, they can just say, "I know you're dealing with a lot.  Tell me how I can be helpful to you..."

Being a caregiver can sometimes feel like having a really difficult job that others may not fully understand or appreciate.  And, as Mike writes, perhaps some of us do it, "...because the alternatives are unacceptable."  On the other hand, perhaps some of us do it because it is a calling of the very highest order...a haunting, humbling, humanizing, most difficult blessing that we carry with us because we are committed to creating the highest quality of life for the most special person in our world.

Welcome to the conversation!

Welcome to the MS Caregivers Blog.  My name is Jon Strum and I am a caregiver for my wife Jeanne, who was diagnosed with secondary progressive MS in 1997.  I'm happy to welcome you to a blog written by MS caregivers for MS caregivers, and I'd like to thank Audra Hindes, Director of Services Management at the Southern California Chapter of the National MS Society for providing the energy that moved this project from concept to reality in what seemed like the blink of an eye.

Being a caregiver can sometimes feel like an incredibly lonely undertaking.  That's why I'm excited to be starting what I hope will become an ongoing conversation that you will find to be supportive, resource-rich, funny, sad...but, most of all, I hope this conversation will serve to constantly remind each of us that we're not alone.

Please stop by often...add your own comments...ask questions...provide answers...and interact with what I hope will grow into a large online community of MS caregivers.  Welcome to the conversation.

Welcome to the MS Caregivers Blog.  My name is Jon Strum and I am a caregiver for my wife Jeanne, who was diagnosed with secondary progressive MS in 1997.  I'm happy to welcome you to a blog written by MS caregivers for MS caregivers, and I'd like to thank Audra Hindes, Director of Services Management at the Southern California Chapter of the National MS Society for providing the energy that moved this project from concept to reality in what seemed like the blink of an eye.

Being a caregiver can sometimes feel like an incredibly lonely undertaking.  That's why I'm excited to be starting what I hope will become an ongoing conversation that you will find to be supportive, resource-rich, funny, sad...but, most of all, I hope this conversation will serve to constantly remind each of us that we're not alone.

Please stop by often...add your own comments...ask questions...provide answers...and interact with what I hope will grow into a large online community of MS caregivers.  Welcome to the conversation.

Being a caregiver can sometimes feel like an incredibly lonely undertaking.  That's why I'm excited to be starting what I hope will become an ongoing conversation that you will find to be supportive, resource-rich, funny, sad...but, most of all, I hope this conversation will serve to constantly remind each of us that we're not alone.

Please stop by often...add your own comments...ask questions...provide answers...and interact with what I hope will grow into a large online community of MS caregivers.  Welcome to the conversation.