MS Caregivers

Tonight -- Join Our Telephone Support Group

Please join me tonight at 5:30PM PST for our weekly MS Caregiver Telephone Support Group.  We've created this phone-in group as a response to the many caregivers who find it difficult to leave the house.  Here's your opportunity to start gaining the benefits of being a part of a support group by just picking up the phone!

Please call Mary Ann Holm at the Southern California Chapter of the National MS Society at 310-479-4456 for the call-in number and other details.

Family

Today Jeanne took her first trip in over 2 years that was not in an ambulance.  She had an appointment with a urologist, and the folks at Hillcrest took care of all the details -- making the appointment, arranging for transportation, providing a wheelchair that accomodated Jeanne's contracted legs and pulling her pertinent medical records together for the doctor to review.

I arrived at Hillcrest to accompany Jeanne to her appointment and Kia, Jeanne's nurse arrived a few minutes later.  Today was Kia's day off.  Kia has her own life.  She has two incredible boys who deserve her time and attention.  But she had made sure that Jeanne's appointment was set up on her day off so that she could accompany us -- making the logistics of the trip safe, familiar and comfortable to Jeanne.  It wasn't until we were hours into the day that I discovered that Kia was not being paid for being with us.

I've written here before that Kia is like a member of our family.  Today I realized that she's much more than that.  The truth is that neither my family nor Jeanne's has been particularly supportive as she's bravely battled MS.  Consequently, we've been estranged from both sides of our family for several years.  That's left me to create a family made up of those people who could be counted on to be there for us -- no matter what.  And that's who Kia Campbell is.  She's part of my family of choice. 

We've all heard the old saying that, "...you can't pick your family."  Well, I've done exactly that.  And tonight as I look back on the events of the day, I'm truly thankful to have picked Kia to be a part of our family.  And I'm equally thankful that she's apparently picked us, too.

P.S. -- Jeanne managed today's trip so well that I've promised her that our next outing will be completely non-medical -- and might even be fun!

National Family Caregivers Month -- FREE Phone Support Group!

November is National Family Caregivers Month and that means that it's time to acknowledge the selfless heroism that every caregiver displays in caring for their loved one.  So...beginning this Monday, November 9th, the Southern California Chapter of the National MS Society is sponsoring a weekly Caregiver Telephone Support Group! 

It's sometimes difficult and even impossible for caregivers to get out of the house.  That's why I'm thrilled that this support group will be meeting by phone!  I will be on every call with the group, and look forward to having as many of you as possible participate.

Here are the specifics:

• The group meets weekly, every Monday from 5:30PM to 7:00PM.
• For the call-in number and other details, please contact Mary Ann Holm by email or call 310-479-4456

Talking with others can frequently alleviate some of the stress and isolation that caregivers sometimes feel.  Join us Monday evenings by phone and connect with others with similar experiences, share resources and receive information that can help support you spport your loved one.  We begin this Monday, November 9th.  I hope you'll join us.

Next Step In My Journey: Coaching For Caregivers

As many of you already know, I've spent the better part of the past dozen years caring for my wife Jeanne.  In that time, I've seen Jeanne transition from someone who embraced health and biked 40 miles every single morning to someone who has spent the last 2 1/2 years completely bed-bound, without the use of her arms and legs, experiencing speech difficulties, cognitive decline and getting all of her nutrition by means of a feeding tube. 

At the same time, my life also transitioned from that of a successful entrepreneur to that of a successful caregiver.  My transition was not nearly as neat and easy as stated.  And my journey continues still.  Several months ago, when Jeanne was transferred to a skilled nursing facility, my role continued to evolve from caregiver to advocate.  And all this time, my role as Jeanne's husband also continued to evolve.  But without Jeanne at home, it was time for me to think about doing something else.

In determining my own next steps, I looked at what I enjoyed most among my past business experiences and coaching was the hands-down winner.  Nothing gives me a bigger internal payback than seeing a coaching client move forward in their lives.  But this time, I thought, I wanted to do more for the countless caregivers that I've come to know.  I wanted to apply my coaching approach as a means of diffusing some of the frustration, anger and guilt that caregivers sometimes experience.  I wanted to help caregivers fight back against that familiar feeling of being overwhelmed.  And most of all, I wanted to make sure that caregivers realized that they weren't alone in their courageous efforts to provide outstanding care for their loved ones without losing themselves in the process.

So welcome to coaching for caregivers.  A one-on-one life coaching program that I've developed to specifically support caregivers.  I'll continue posting to the MS Caregivers Blog, but I also invite you to visit The Coach For Caregivers and find out more about how caregiver coaching may be helpful to you.

 

Happy Annivesary To Us

Jeanne and I celebrated our 18th anniversary today.  It wasn't a huge celebration.  I brought coffee ice cream and one of our photo albums to Hillcrest and we looked at pictures of our wedding day, our honeymoon and a few other random events from the distant past while we killed the pint of Haagen-Dazs. 

This may sound like a somewhat muted and even mundane anniversary celebration, but it ranks as the very best in my mind.  See, a year ago Jeanne began a two-month hospital ordeal stay that ended with her being discharged to Hillcrest.  But it could have ended much worse.  In fact, I had more than one doctor, on more than one occasion, let me know that it was unlikely Jeanne would survive that particular hospital stay. 

But Jeanne is the strongest person I know.  And I sat by her bedside as, slowly but surely, the seizures, the fever, the days of complete non-responsiveness and all of her exacerbated MS symptoms finally began to fade.  She's been at Hillcrest now for the past 10 months.  And after quite a rought period, she's managed to stay out of the hospital for the past 4 months -- a record for her.  She's even shown some modest improvement.  So today we ate ice cream together and made jokes about those photos taken back in 1991.  In truth, it was the richest and most extravagant annivesary celebration we've ever had.  One that I'll never forget.

Happiness

Last night I caught Away From Her, a beautiful film about dealing with the realities of Alzheimer's.  In it, Olympia Dukakis plays the wife of a man suffering from advanced Alzheimer's.  As she is contemplating her loneliness, she says, "At some point, you have to give yourself permission to be happy."  This is an incredibly simple yet profound piece of advice.

The question of the day for all caregivers:

Have you?

Feeling Overwhelmed?

Watching TV last night, I heard a caregiver...well, an actress playing the part of a caregiver...say, "Did you ever feel more overwhelmed than you even thought you could be?"  Her comment reminded me that no one ever plans on being a caregiver for a loved one.  It's the one job that people rarely apply for. 

John Lennon had it right when he wrote, "Life's what happens to you when you're busy making other plans."  And sometimes the circumstances of life determine that you're going to be someone's caregiver.  Some people literally disappear when faced with this new reality.  Others, drawn by a sense of commitment, responsibility, obligation or even guilt, decide to stay.  Most brand new caregivers have no idea of where this unplanned journey down this unknown path will lead them.  Some create whole scenarios of the future in their mind just so they are not left facing the unknown alone.

Hopefully, some caregivers find their way to support systems...or create new support systems for themselves.  Family, friends, faith and community can all be a part of that support system.  I hope that this blog, in some small way, is a part of your caregiver support system.  I hope that it illustrates that while the path of your journey may be different than the one you had planned, it doesn't have to be a journey made in isolation -- you're not alone.

I also hope that you are turning to other support resources.  In our journey, Jeanne and I have found the Southern California Chapter of the National Multiple Sclerosis Society to be a significant and supportive part of our "family."

Reaching out to identify your support network will not solve every problem and frustration that you will feel as a caregiver.  But it will certainly help you to avoid feeling "more overwhelmed than you even thought you could be".

Changing Roles In Your Relationship

I was reading an article recently that talked about grieving for a spouse or partner when they have passed away.  The article included a list of the various roles that a person plays in the life of another and how these roles are very difficult to replace.  The list included, "... lover, companion, confidant, advocate, caretaker, etc." 

Now imagine for a moment that your spouse hasn't passed away, yet they are no longer able to fulfill some or even all of these roles that are vital to a relationship.  If you're a caregiver for someone with a chronic and progressive illness you don't really have to use your imagination here at all.  Because this can sometimes become your reality.  Your loved one is still with you, yet unable to be a lover or a confidant or even a companion.  What happens then?

Some caregivers simply deny this aspect of their lives.  But even they grieve the loss...below the surface of what they themselves can see.  Others try to "move on."  But what does moving on mean when your loved one is alive?  It's a question that has as many answers as MS has symptoms.  And, like MS itself, 10 different caregivers may arrive at 10 different answers.

I wish this post could be a "How To" guide to dealing with this incredibly painful aspect of caregiving.  But I'm not sure that there is a universal, one-size-fits-all solution to dealing with "the long goodbye."  I am sure that it's something that each caregiver has to come to terms with.  And sometimes coming to terms with what your loved one can no longer be for you begins with acknowledging that, as a caregiver, your relationship with your loved one is changing.  They are looking to you for very different kinds of things and, simultaneously, you must acknowledge the new roles that they can fulfill in your life as well as those roles that they are no longer capable of fulfilling.

Recognizing that your relationship with your loved one may be transitioning into a different relationship with different needs, goals and roles may be the first step to understanding your place in that relationship while learning to appreciate the new things that the relationship may deliver to you.  It's not a complete answer, but it's one more small step toward caring for yourself.

3 Traits of Great Caregivers

In a previous post, I've discussed how it's pretty hard to be an "average" caregiver.  You're either a good caregiver or a bad one.  So what does it mean to be a "good" caregiver?  I think that may have as much to do with the loved one you are caring for as it does with the caregiver themselves.  But I also think that success leaves clues...and that includes success as a caregiver.

Are there traits or characteristics that successful caregivers share?  I think so.  And I'd like to share perhaps the most important 3 traits that successful caregivers possess.

Great caregivers lead with love
There are few roles in life that are more demanding than being a caregiver for someone with a chronic illness.  The stress and emotional strain can be unbearable at times.  And that's why all of the logical, rational, well thought out reasons for being a caregiver can go flying out the window at those particularly stressful times.  But, as they say, love endures.  When a caregiver leads with love, they never wonder why.  They always know exactly why they are doing what they are doing.  And any commitment backed up by unconditional love becomes the easiest commitment to keep.

Great caregivers learn to connect with others
Some people "get" this right away.  Others need to learn.  But no one succeeds in life on their own -- especially when it comes to being a caregiver.  Becoming a great caregiver requires that you learn to ask for and accept help with grace.  It requires that you proactively build a social network that can serve as your safety net.  It forces you to keep in mind that you're never alone, no matter how isolated you may feel at that moment.

Great caregivers remember to take care of the caregiver
Caregiver burnout is an all too frequent occurence.  And it's easy to understand why.  That's why it's so important for caregivers to take the time to take care of themselves.  To give themselves an afternoon or evening "off."  To treat themselves to that special meal.  To invite friends and family into their home.  To do everything possible to offset some of the stress and strain that they face on a daily basis.  Because if the caregiver fails to take care of themselves, then there are 2 problems to solve -- the caregiver needs to be cared for, as does their loved one.

I'll continue to add to this list of traits, but if I had to limit myself to just three then you have them here.

Time Flies (When Jeanne's Doing Well!)

It's hard for me to believe, but Jeanne's been at Hillcrest Care Center (her skilled nursing facility) for 8 months.  In terms of her health, it's been a real roller-coaster ride.  In terms of her care, it's been an amazing learning experience for me.

Like most every caregiver that I know, I promised Jeanne that she would never find herself in a nursing home.  I spent years doing everything possible to keep her out of one.  I stopped working for a few years to be on hand to care for her.  I hired full-time caregivers...who evolved into live-in caregivers...to assist her when I was out of the house.  I did everything that I could...including going broke in the process.

Finally, last fall, Jeanne's doctors and some of our closest and most trusted friends at the Southern California Chapter of the National Multiple Sclerosis Society prevailed upon me to consider a nursing home.  As I've chronicled here, I liked everything that I saw and heard when I visited Hillcrest and sat down with their executive director, Brad DeHaan.  But I still had concerns, misgivings, guilt (LOTS of guilt) and a whole variety of other emotions to work through.

Well, here we are 8 months later and I have to repeat what I've already said on this blog -- Jeanne is receiving a higher level of care at Hillcrest than she received at home.  She's in a better place.  Have their been bumps in the road?  It wouldn't be real life without them.  Have I found myself frustrated at times?  Of course.  But I experienced bumps in the road and frustration while Jeanne was still at home -- it has something to do with this not being a perfect world that we live in.

Bottom line -- Jeanne's doctors and our friends were right.  They could see things more clearly than I could and as a result of their strong lobbying efforts, I did the best thing for Jeanne.  I continue to visit her every day...and I continue to advocate on her behalf.  And I've been told more than once by the nurses on staff at Hillcrest that Jeanne benefits from my advocacy, so it's a role that pays off in important dividends.

But Jeanne's transition to Hillcrest has also had a profound effect on the quality of my life, as well.  I have options.  I have free time to enjoy.  I have the opportunity to pursue a variety of interests -- including a new career path that combines the things that I learned in the course of a successful business career with the things that I learned as a caregiver!  But that's a subject for another day.