MS Caregivers

Believe half of what you hear...but which half?

"Can you help me with this drink?" Jeanne asked.  A simple enough request.  Except Jeanne is still confined to a hospital bed, receives all of her nutrition (including all liquids) by way of a feeding tube and there was no drink anywhere to be seen.  Thinking that if I could force her to focus more intently on her request, she'd reason it out that she was having a "cognitive moment" and move on.  So I casually replied, "What drink are you talking about?"  And her answer made my heart skip a beat.  "This one.  In front of me." 

It happened two days ago.  I became aware for the first time that Jeanne was now not only having cognitive challenges, but was -- at least some of the time -- living in another world.  And I was not going to be a part of that world. 

There are plenty of caregivers who deal with dementia on a daily basis.  And I bow to each of them.  I don't know that I can accurately portray the emotional impact that one of these conversations can have on a loved one.  And I'm sure that, like everything else, repetition makes you better at dealing with it.  But for now, it's new territory for me to integrate into my caregiving duties.  And so far, the terrain is incredibly bumpy.

Things that I'm ________________ for

I wonder how many blog posts being written today include the word "thankful"?  It's probably a behavioral artifact that dates back to the essays we were coaxed into writing by teachers trying valiantly to keep our minds off the clock as we counted down the seconds before that final bell rang and we were granted 4 whole days off from school.  Thanksgiving?  Pilgrims?  Plymouth Rock? Heck no.  Kids everywhere knew the true meaning of those 4 precious days off...it was an amuse bouche to the real feast of time off that was lurking right around the corner -- winter vacation!

I try to remember to be thankful every day, in real time.  Genuine acts of kindness are all around us.  I like to consider and acknowledge them as they occur.  But I'm still grateful that there's a special day set aside for us to...consider things.  The Official Thanksgiving Agenda requires that we take some time to reflect upon the people and events in our lives that make us smile.  Those special people in my life know who they are.  But it's still worth pointing out that Thanksgiving is the only American holiday that is premised upon the act of reflection. 

Reflecting upon this past year, I'm most thankful that I'll have the opportunity to celebrate another Thanksgiving with Jeanne.  That wasn't necessarily a sure thing as she endured about 7 difficult weeks in the hospital earlier this year.  I'm thankful for Audra Hindes' commitment to getting this blog launched.  I know it helps other caregivers...not to mention this one.  I'm thankful that Gail Murdock truly understands that MS affects families, not just individuals.  I'm thankful that Paris, Jeanne's live-in caregiver, sent me an email telling me that she was the ideal caregiver for Jeanne, because she was right.  I'm thankful that each day, at an ever increasing pace, science brings us closer to understanding the final mysteries of the body and brain.  I'm thankful for the close friendships that I've come to treasure, the support of friends that keeps me going on those days when it seems as though I'm never going to swallow all that I've bitten off...along with all of that extra stuff that life decided to throw my way.

I hope you take a moment tomorrow to reflect on the people in the world that make you smile.  After all, that's what the day is really all about.  And if you end up feeling as good as I did putting together this short list, perhaps you'll want to make Thanksgiving a daily occurance too.  Parade and turkey optional, of course.

Thanksgiving is Around the Corner -- What Now?

On October 19, I wrote a post called Heading Into the Holidays.  My post opened with the observation that even though it was 75 degrees and sunny, the holidays were right around the corner and I was beginning to wonder how I would be spending what was once my favorite time of year but, with the ongoing progression of Jeanne's symptoms, had become a more muted season for me.

Well, Thanksgiving is less than a week away.  And just as it was on October 19, it's 75 degrees and sunny as I write this.  And I still have very mixed feelings about the upcoming holiday season.  In fact, the only difference between how I'm feeling now and how I felt back on October 19 is that several weeks have come and gone.

My first thought about Thanksgiving was that I would probably spend it with friends.  But invitations haven't quite come pouring in.  And I can completely understand that.  Of all the holidays, Thanksgiving is often the one that's reserved for family, and lots of my close friends are focused on spending time with family this year.  I get it. 

Plan B was that, for the first time ever, I was going to pick up a prepared Thanksgiving meal from a local restaurant or supermarket.  I had some fun comparing the different feasts being offered around town.  I finally made a decision about where my Thanksgiving meal would be coming from.  And then I told Jeanne. 

I've learned that even though Jeanne is dealing with some serious cognitive issues, she is most "present" in the morning.  Unfortunately, by the end of the day Jeanne is in a very different state...something her neurologist tells me is called sundowning.  Not an unusual state of affairs.  Just an unfortunate one.   So I make sure that I talke to Jeanne every morning -- especially if there's anything I want her to process or offer an opinion on.  And so one morning I let her know that since her swallowing issues would not allow her to enjoy Thanksgiving dinner (REMINDER: Since August, Jeanne receives her nutrition by way of a feeding tube), I wasn't going to cook this year.  Instead, Thanksgiving was going to be a Take-Out affair.

Jeanne said, "That's not right...you love to cook.  You should cook anyway...you'll have leftovers around.  And you can sneak me some food!"  As I thought about the way I might do the turkey or some of the side dishes I'd likely choose to cook, I found myself feeling pretty good.  Jeanne was right.  I love to cook, and I no longer give myself the opportunity.  So I've adopted Plan C, courtesy of my wife.  I'll be preparing a dinner that I'll probably enjoy over several days.  But I'm betting that my greatest enjoyment will occur while I'm playing in the kitchen.  And now I even find myself re-thinking the list of people that I know, wondering who might not have plans for Thanksgiving, because we'll have plenty of food to share.

My plan for next Thursday is to spend the morning in the kitchen, the next part of the day with my wife and then catch some sports on TV, enjoy some of my own cooking...and even sneak some food to the person I'm most thankful for having in my life.

Taking Back the Power of Choosing

Randy Pausch is a Professor at Carnegie-Mellon University, where they have an academic tradition called "the last lecture".  The idea is that if, hypothetically, you were going to die, this lecture would be your last and final lecture to your students.  The twist here is that Randy Pausch is actually going to die.  After enduring all of the treatments possible, his pancreatic cancer has metastasized, and he has about 12 tumors invading his pancreas, liver...well, you get the idea. 

His doctors have told the young father of 3 that he has no further medical options and although Dr. Pausch seems to be the image of fitness and health, he only has months to live.  His last lecture is not a dress rehearsal.  Some of you may have actually seen it, as he's appeared on Oprah to deliver the same lecture he delivered at Carnegie-Mellon.  If you havne't seen it, you can find it here.

As I listened to Dr. Pausch, what impressed me most was that he went out of his way to state, "...if I'm not morose enough for you, I'm sorry to disappoint.  But I don't choose to be an object of pity."  Later in his lecture, Dr. Pausch continues, "You can choose to take your finite time and energy and effort and you can spend it complaining or you can spend it playing the game (of life) harder."  Still later, he adds, "I am dying soon, and I am choosing to have fun today, tomorrow and every day I have left."

The randomness of health has robbed this man of much of his future, but he refuses to let it rob him of his right to choose how he lives his life each day.  This isn't a question of whether or not we're willing to see the glass as half-empty or half-full.  Randy Pausch is telling us that the choices we make after seeing the glass are the choices that will continue to determine our quality of life.  And that's true whether we have days, weeks, months or years to live.  It's as true for those directly affected by a chronic illness as it is true for those who care for them and are indirectly affected.  (Truth be told, it's as true for those of us who are completely healthy and have no caregiving responsibilities at all!)

I'm the first to admit that I've found myself sometimes overwhelmed by the continuing progression of Jeanne's symptoms.  I probably deal with more stress than I should and sometimes more guilt than I'm entitled to.  Randy Pausch has just served me with a reminder that I still have choices to make each and every day.  And they are the choices that will determine whether or not I've chosen to live that day in the fullest way possible.  And if someone like Randy Pausch chooses to maintain that outlook on life, how can the rest of us even pretend to have an excuse?

Let's Hear it for Zoe Koplowitz

This week, 59-year old Zoe Koplowitz completed her 20th New York Marathon.  Zoe finished the Marathon in 28 hours and 45 minutes.  She was the very last finisher in the race.  But she finished.  And given the fact that Zoe was diagnosed with MS over 30 years ago, finishing the race was a testament to both her mental and physical perserverance.  Clearly, Zoe knows how to finish a race, even when it's meant crawling over the finish line. 

Sometimes it's hard for me to accept the randomness of multiple sclerosis.  We don't know why one person gets MS and the next person doesn't.  We don't know why one person with MS has one set of symptoms while a second person with MS has a completely different set of symptoms.  And we don't know why MS progresses at such different rates among those living with the disease.

Jeanne was diagnosed with MS 10 years ago.  At that time, she was symptom-free.  Now, she's confined to the hospital bed we've set up in our bedroom.  She requires constant care.  She won't be running...or walking...any marathons.  How do you make sense of the disparity in the level of disability between Zoe and Jeanne? 

As Jeanne's husband, I find questions like this can absolutely pull me out of whatever I'm doing at the moment and stop me cold.  And I don't ever end up embracing any profound lesson...just the simple truth that "life happens."  Sometimes these uncomfortable questions come to me when I'm reading an article about someone like Zoe.  Or sometimes they come to me when I'm watching a TV profile of presidential candidate Mitt Romney, and they point out that his wife has MS.  Except she looks fabulous and acts as if she's healthier than I am.  Yesterday, the question came from Jeanne herself.  In her barely audible whisper she asked me, "Do you know the date that my life stopped?"  Try answering that one with some sort of a reasurring smile on your face.  I actually found myself hoping for the cognitive haze that she regularly deals with to descend sooner rather than later.  But part of me also was put on notice that on some level of her consciousness, this is what Jeanne is thinking about. 

Sometimes being a caregiver is about providing logistical support.  Getting that special person in your life to their medical appointment, deciding that an accessible van is a hundred times cooler than that sports car you had planned on or literally carrying that person over a rough road or up a few stairs that they otherwise could not have navigated.  Other times, being a caregiver is about battling to just keep running the race yourself so that you can look that special person in the eye and remind them of all the ways that their life never stopped.   

Zoe Koplowitz has the good fortune of feeling great when she crosses the finish line of her marathon. I'm feeling fortunate that I'm still running my race, happy that the finish line is still not in sight.

November is National Family Caregivers Month (Part 2!)

I want to take a minute to wholeheartedly thank Jon Strum for so diligently and eloquently authoring this blog.  It is extremely valuable to many out there who may be living in a caregiving situation that is even somewhat similar to Jon’s experience.  Jon has a way with his words that poignantly captures not only his daily living activities, but also very accurately his emotions as they vary day to day, just as his wife’s condition may change from day to day.  This blog is a fantastic tool and resource for anyone who reads it.  Thanks Jon!

As many of you know, National Family Caregivers (NFC) Month is a time to thank all of those individuals who give of their time, energy and efforts year round to help their loved ones in need.  The National MS Society is pleased to be an endorsing organization of NFC Month and a part of this campaign to bring attention to the needs of family caregivers. The National Family Caregivers Association (NFCA) leads the NFC Month effort and creates a special Family Caregiver Kit with educational and promotional materials to help you celebrate. Here's what you can do to get involved:

• Remind family caregivers to believe in themselves, protect their health, reach out for help, and speak up for their rights.
• Encourage family caregivers to identify themselves as a family caregiver in conversations with others, including friends and family as well as healthcare professionals.
• Plan your own local NFC Month Celebration. Contact the National Family Caregivers Association at www.thefamilycaregiver.org/ or call (800) 896-3650 to learn more about how you can obtain family caregiver kits and ideas for celebrating National Family Caregivers Month.

During my 5 ½ years working at the National MS Society, I have met and spoken with hundreds of families and caregivers.  While there is certainly uniqueness to every family’s home life and situation in dealing with multiple sclerosis, some of the needs of caregivers remain the same.  The National MS Society strives to provide various programs and services that will address these needs on a local level.  For example, at our local Southern California Chapter, we offer an opportunity for respite care financial assistance, whereby the caregiver of a loved one with MS is allowed a “break” while a caregiver from a licensed home care agency is provided.  Respite care is offered once a year, at roughly 6 days for 12 hours per day. 

Another potential resource for both the person with MS and the family caregiver is the physical/occupational therapy financial assistance fund.  If a person is uninsured or underinsured, a licensed PT or OT is provided in accordance with a doctor’s prescription.  The professional does an initial in-home assessment to determine the client’s physical and in-home safety/accessibility needs, and a few follow up sessions are provided so that both the person with MS and the caregiver work as a team to learn and understand how to best implement all professional recommendations.

Several chapters of the National MS Society also offer caregiver support groups, as well as case management services, in which a professional social worker is sent to the client’s home in order to best determine how to help with certain issues such as applying for disability or insurance benefits, in-home meal delivery, coordination of medical care, and much more.  For information on what is offered in your area, please call 1-800-FIGHT-MS from anywhere in the country and you will be connected to your closest chapter.

Many cities/towns in all 50 states offer local caregiver resource centers.  These are also great potential organizations that can help to address a family’s specific needs.  Several of these are listed just to your left on this page under “resources.”

As part of the National MS Society, I want to thank each and every one of you for all of your days and nights of caring.  You are providing the most selfless and worthwhile kind of service – a helping hand to someone you love when they need it the most.

Audra Hindes, MSEd, MHC

Director, Services Management

National MS Society - Southern California Chapter

November is National Family Caregivers Month

Yesterday, President Bush issued his annual proclamation reminding us that November is National Family Caregivers Month.  As I thought about this, one of the things that crossed my mind was the economic impact of caregiving.  Family caregivers are providing 80% of the long-term care in the US, a level of care valued at $306 billion a year (that's almost $840 million each day!), which is more than what is currently being spent on nursing home and paid home care combined.

We have an interesting phenomenon taking place right now in our country.  On the one hand, we have more people than ever qualifying for social security and Medicare benefits and placing a financial strain on an already fragile social security system.  This number will continue to grow as more and more of the baby boomer generation continues to age.  At the same time, advances in medical technology are prolonging our lives like never before.  Yes folks, the good news is we just aren't dying like we used to.  And in the specific case of MS, advances in MRI technology are enabling people with MS to be properly diagnosed earlier than ever before.  Hence, the advent of pediatric MS -- something rarely heard of just a decade ago. 

What does this perfect storm of unrelated events mean for MS caregivers?  It means that there will be more of us.  Lots more of us.  Beyond just those families affected by MS, it means there will be lots more family caregivers in general.  It also means that caregiving is fast becoming a public health crisis in its own right.  It means that soon the numbers will dictate that it is no longer acceptable to say that family caregivers have a shorter life expectancy than those who are not caregivers.  It means that caregiver training, mental health support and other caregiver support mechanisms will, one day, automatically start at the same time that a patient is diagnosed with MS.  It means that a Medicare system already stretched beyond reasonable limits will soon have to tackle the sticky issue of providing financial support for family caregivers.  And that financial support may start earlier and have to continue for a longer time than ever before.

You can count on at least a few speeches or well-meaning prounouncements being made during National Family Caregivers Month.  Someone will thank us for all that we do.  Someone will remind us that it's so important to 'care for the caregiver' by supporting various forms of respite care.  But at the end of the day, we could all probably do with less respite if the stresses and day-to-day anxieties associated with caregiving were better addressed.  It's time to recognize that this shadow industry that no one ever wanted to be a part of, that's already providing $306 billion in care services each year, is one of the major growth industries of the early 21st century.  How long will it be until we speak with an organized voice and demand more than just vacation days?