MS Caregivers

Gail Sheehy's Labyrinth of Caregiving

Well-known social anthropoligist and author Gail Sheehy has been working on a book about caregiving.  (Disclaimer: I have spoken at length with Gail regarding this project)

In her book, Gail defines the 9 phases of caregiving:

• Shock & Mobilization
• New Normal
• Boomerang
• Playing God
• I Can't Do This Anymore
• Circle of Care
• Coming Back
• The Long Goodbye
• Afterlife of the Caregiver

You can read more about The Labyrinth of Caregiving here.

Be a Good Caregiver or a Bad Caregiver...but there's no middle ground

There are lots of areas of life where if you find that you aren't "good" at something you may actually find that you are "average" or "slightly above (or below) average".  But it occurs to me that caregiving does not fall into this category of life experience.  I can make the case that if you don't work at becoming a "good" caregiver, you will probably end up a "bad" caregiver. 

Being a caregiver carries a variety of responsibilities.  A caregiver's responsibility to the person they are caring for is to enhance their quality of life by providing those every day tasks that the patient can no longer manage for themselves.  Handling meal preparation, dispensing medications, getting to and from medical appointments, dressing and personal grooming may all be just a part of a caregiver's role.

A caregiver also has a responsibility to themselves.  This responsibility includes managing their own health and well-being.  It means not losing themselves by maintaining a life apart from their caregiving role.  It means remembering to "care for the caregiver" so that the caregiver does not face burnout.  And all of this is much easier said than done because of the sometimes emotionally and even physically overwhelming requirements of your role as caregiver.

Failure to master the role of "caregiver" opens the door to burnout.  Feeling overwhelmed frequently leads to caregiver depression.  It can lead to feeling unintentionally angry with the loved one you are caring for, taking shortcuts in providing care or even completely shutting down.  And all of these things do harm to both the caregiver's loved one and the caregiver themselves.

That's why it's so crucial to care for the caregiver.  If you forget yourself in this process, there's very little middle ground.  And then we end up with two people -- both you and your loved one -- who need caring for.  Taking care of yourself can be the most important step that you take in order to successfully take care of someone else.

Caregivers From Mars & Patients From Venus

We've all probably read, heard or talked about the social/gender phenomenon made famous in the book Men Are From Mars, Women Are From Venus.  But have you ever thought about how the Mars/Venus hypothesis applies to caregiving...and how this is an especially important aspect of caregiving within the MS community?

From the earliest age, women learn to build and rely upon their social network.  When a schoolgirl discovers that the little boy pulling her pigtails actually has a crush on her, she immediately shares the news with her girlfriends.  Her friends counsel her with sage advice and strategy for best dealing with the situation.  And so it goes...the schoolgirl matures but this particular behavior doesn't change.  Women are socialized to turn to their girlfriends in times of triumph and tragedy...to share their wins, fears and losses.

Men learn a somewhat different lesson.  Men are socialized to be the problem solver.  To shoulder responsibility.  To get 'er done...and asking for help is somehow equated with weakness and failure.

Successful caregivers learn that they can't succeed alone.  (The truth is that in any endeavor, no one really succeeds alone, but that's a topic for another blog).  Caregivers learn how important it is to reach out to their own social network.  To ask for help and to accept help and support with grace.  For women, it's something they've been doing all of their lives.  They merely apply what they already know to a new situation.  For men, it's often a whole new world.  It can be scary and intimidating.  But it can be learned.

The particular challenge within the MS community is that we know that MS targets women at a somewhat higher rate than men.  This means that a majority of MS caregivers are likely to be men.  But we also know that in the face of an MS diagnosis, male spouses frequently leave.  I haven't read any definitive reasons for the male exodus in the face of chronic illness, but I can't help but think that at least a partial reason lies in the fact that on Mars, men never learn the basics for communicating with and relying on their social network for help and support.  Perhaps some sort of outreach education could go a long way toward creating better Martian caregivers for our patients from Venus.