MS Caregivers

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.