WHEN A CAREGIVER DIES

bigstock_Old_Couple_Holding_Hands_2041049     First published on Disability.gov

For 70 years she put up with his (sometimes volcanic) rumblings.  He doted on her with diamonds, and was a poorer father for it.

The youngest of 5 much older siblings, she was babied into being passive and timid.  He was a blustering bad boy who loved control; a lifelong natural at most things mechanical.  He took seriously his duties as a man, a spouse, and head of the household.  He didn’t brook anything that deviated from his definitions of right and wrong, a bigot in many ways.   A mother and military wife who could fend for herself and children when she needed to, she preferred being cared for . . .  and he liked it that way.

Both were fortunate:  for much of their lifetimes, neither was chronically ill or disabled.  Unless you count legal blindness, which he didn’t (though most who drove with him did).  And even though she developed macular degeneration, a disease of the eye that usually leads to blindness, she could sometimes see the world better than he did.

Several years ago her macular degeneration began to impact both of them.  By then, her hearing had deteriorated, too, and her world shrank.  Although she rarely admitted fears (not to us, anyway) he expressed his the only way he knew how:  he fixed as much as he could.  He cut her food, gently guided her through the dimly-lit places they avoided more and more, lent her his arm, and searched out gizmos and gadgets he found in catalogues.  He took care of her.

Last year, George left Kate.

True to his role, George had organized everything, including who his wife’s legal caregiver was to be — my husband. Now, almost a year later, Kate no longer plans on joining George in death right away and doesn’t cry for hours each night.  Not that she tells us, anyway.  As her vision deteriorates Kate, not surprisingly, adapts. David and his sisters do what they can from a distance of a thousand miles, mostly via phone calls and the occasional visit.  Immediate support comes from close friends and a kind and caring nursing home staff.

Today, it takes a dozen people to do what George did.  Even so, he can never be replaced.

None of us could live well if we spent too much time dwelling on the eventuality of death.  But some of us — the visibly or invisibly disabled or chronically ill — need to spend more time thinking about the profound changes a caregiver’s death brings.  Like David’s parents, my husband and I are fused by years, experiences, commitment and love.  Though I’m the one diagnosed with multiple sclerosis, in truth MS is something we both carry.

As we age and tire, slow and re-prioritize, both of us have to remember that though we plan to go out holding hands as star-crossed lovers, the truth is more mundane . . . and likely.  Whoever is left to mourn, cared-for or caregiver, what needs to happen is the same:

1.  Plan now.  The outcomes might look different, but the grief will be the same.

2.  Get your house in order.   You don’t have to be a survivalist in order to be prepared with legal, medical, financial, and personal concerns.

3.  Create your own family.  Gather together people who care, no matter what the will says.

4.  Get outside each other.  Get perspective from someone trustworthy and caring who’s outside the mix — minister, counselor, or therapist.

5.  Express yourself and your needs clearly, often, and appropriately.  Consider what to say and who you say it to.  Sometimes being blunt can be hurtful; at other times necessary.  Some people are better prepared to bring a casserole or help with housekeeping than to see you cry.  Try out your voice to a journal, or pay a therapist or counselor . . . they can be skilled and trustworthy allies.

6.  Keep in touch with others.  It’s unfair (and shortsighted) to place the burden only in one place — like with your son.

7.  Have someone to talk to, starting now.  Clergy, therapist, physician, friend, partner, family can help you sort out what to say and how to say it.  Think of yourself as a nuclear reactor.  Keeping it to you guarantees one of two outcomes:  shutting down or exploding.

8.  Join a group of those experiencing what you are.  There’s no substitute for having someone “get it”.  Don’t believe me?  Try talking to someone who doesn’t.

DSC_4482-K&DKathe Skinner is a Marriage & Family Therapist and Certified Relationship Specialist     specializing working with couples, especially those for whom invisible disability is part of the mix.  She has been diagnosed with multiple sclerosis for over 35 years.  Kathe and her husband David hold Communication Workshops in Colorado Springs and are both Certified Instructors for Interpersonal Communication Systems.  Along with their two hooligan cats, Petey and Lucy, they live along Colorado’s Front Range.  Find out more about Kathe and David at http://www.beingheardnow.com and read Kathe’s blogs, ilikebeingsickanddisabled.com and couplesbeingheardnow.com.

© 2014, BeingHeard LLC

THAT GIRL KEEPS FALLING ON HER BUTT

fall-down-stairs.jpgMy balance, isn’t.

So when I head straight toward the bushes at the entrance to my building it isn’t surprising.

Bushes are a trigger in picturing my first (and only) experience as a new MSer in an MS support group.   Recommended by my neurologist, the group experience was meant to help me cope with the way-past-due-diagnosis of my disease.

Instead, it freaked me out.

Walkers, wheelchairs, canes, crutches – and me, invisibly disabled, in high heels looking at a future unable to wear them.

Big time downer.

Especially when a guy lost his balance and landed on his butt in a bush. That he laughed it off was horrifying.

I understand, now, the reason he laughed.  Not only is laughing at the faux pas around the commonplace common, but situations that elicit that kind of response are also all too common.

The reality he must’ve experienced then is one I now share.  Today I laugh, too.  Because it’s truly comical at times and also because laughter is socially reassuring.  “It’s alright, folks.  I’m alright.  Nothing to see here, move along.”

Knock wood, I’ve yet to experience anything dire in my navigational mistakes.  Embarrassment to be impaired in public is what hurts. Most of us don’t know what to do in a situation like that.  I put lots of effort into looking unimpaired, but when I catch sight of myself in a shop mirror, the reality of how I walk, for example, isn’t normal at all. 

When I use an assistive device, a rollator in my case, parents scold their children for staring.  I’ve yet to hear mommy or daddy use the opportunity as a teaching moment to talk about disability; rather it’s “don’t stare” before hurrying away.  No wonder society hasn’t made much progress in accepting the disabled community who, except to children, remain largely invisible.

Recently, Disability.gov blogged an article about steps to take when being newly disabled.

It’s worth a read, especially if you’re not.

Specializing in couples work, Kathe Skinner is a Colorado Marriage & Family Therapist and Relationship Specialist.  She works especially those couples where invisible disability is present.   For over 10 years, she and husband, David, have been Certified Instructors for Interpersonal Communication Programs .  Find the schedule for their next Couple Communication Workshop at http://www.beingheardnow.com© 2014 Being Heard

READ IN 92 COUNTRIES!

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

A San Francisco cable car holds 60 people. This blog was viewed about 3,500 times in 2013. If it were a cable car, it would take about 58 trips to carry that many people.

Wowee zowie!

There’s still a long way to go in making people aware of invisible disabilities.  And that so many of us experience them.

Of course, ILIKEBEINGSICKANDDISABLED is about much more than invisible disability.  That’s as it should be because our lives are so much more than how we feel or what chronicity label we carry.

If you read my blog because of my sly humor or because something has touched you , made you laugh or think or angry, I’m happy for that.  I challenge you to share with someone you know who might appreciate something I’ve said.  Oh…and please let me know what you think about something I think.

Thank you, readers, for putting on a smile on the face of the last day of 2013.

Click here to see the complete report.

Kathe Skinner is a Marriage & Family Therapist and Relationship Coach in private practice.  Diagnosed with multiple sclerosis for over 35 years she’s like many who experience invisible illness — most of what happens in her life is not directly attributable to being disabled.  With her long-suffering husband (that doesn’t have anything to do with illness, either), they’ve been married almost 28 years, sharing their Colorado home with two resourceful hooligan cats, Petey and Lucy.   Read more about the Skinners at http://www.beingheardnow.com

© 2013 Being Heard, LLC

WOMEN’S LIB IS A LIE

Speaking from a disabled woman’s point of view, living the “lib lie” in relationship simply doesn’t work.

The “lib lie” I’m talking about is putting career before relationship, being damned if I’ll make cacciatore, or being complimented for how I look.

Where was my head all these years.  I’ll tell you where: in the conference room, the kitchen, and in front of the mirror.

Truth be told, I like making cacciatore — and being appreciated for it.  The same as anybody would, including guysfishy.  Liberation doesn’t stop at individual freedom; its true worth is in how liberated our partnership is.  Oh, stop — I’m not talking about three ways.  See, if one partner realizes cultural or family baggage enough to detach a bit from it and the other partner is clueless, the relationship’s pretty lopsided.  But hey, some partners like their partners a tad underdone.

Clueless for real or clueless pretended, either path leads right back to a problem that’s repeated itself for generations.

Sherod Miller, co-founder of Interpersonal Communication Programs, defines a healthy relationship as the collaboration of two strong people “bridging” to each other across a committed lifetime.  Paula Derrow, writing in The New York TImes, calls it “leaning in together”.  Writing recently about her marriage in The New York Times, Paula describes a marriage right out of Home Depot.

A do-it-yourselfer, her marriage to another do-it-yourselfer spanned two states.   Their finances were separate, and so was ownership of their separate homes.  Except for weekends, each lived a separate life.

Talk about distancing.

When Paula was laid off from her job as a writer, she had reason to need her husband in very real ways, one assumes for the first time. Lying awake, the writer struggled with questions about her independence, whether she could afford to continue living separately, and whether her husband was encouraging and supportive only as a way to get her to come live with him and cook up a cacciatore.

I won’t say where Paula Derrow’s head was, but to come to the realization that her marriage was about the two of them together, not separately, is, to put it charitably, wrong-thinking.

More than most, those of us with disabilities, invisible or not, have had to come to terms with the lie that we can make it on our own.

The poor state of the world economy has left millions out of work, stressing personal worth and identity.   With so many jobless, you’d think social perception about being unemployed would’ve changed; it hasn’t.  Role expectations die hard.

Changes in the social order are happening all around us; role-turbulence is no longer reserved for the disabled or marginalized others.

These days, anyone can become marginalized.

Relationship’s great test is how to be together without losing oneself; how to get from one place to another while travelling together.

Kathe Skinner is a Marriage & Family Therapist and Relationship Coach specializing in work with couples whose relationship is affected by invisible disability.  Like most of her generation, she has been powerfully affected by the Women’s Movement of the 1960s and 1970s and has had trouble integrating that independence with the sometimes-limitations of multiple sclerosis.   She and her husband David live in Colorado where they teach couples to collobate their way to happier relationships.  Read more about she and David’s Communication Workshops at http://www.BeingHeardNow.com.

THE GRASSHOPPER & THE ANT: A LOVE STORY

 In the modern age, long past the time Aesop and Burl Ives were telling stories, hybrids thrived.

Different is Better

Different is Better

One such unlikely combination was the grasshopper and the ant.

Now, you would think that being such behavioral opposites their paths would never cross.

You’d be wrong.

Somewhere in the reeds and weeds all the bugs were doing their thing.  Beetles rolled balls of doo-doo around in      circles.  Bees started happy hour before five o’clock while cockroaches didn’t look anyone in the eye.

Ants, on the other hand, saw none of this, nor did they care.  Their journey was always the same:  back and forth back and forth from here to there here to there without looking left or right the whole time.

Don’t wait it’ll be too late don’t wait it’ll be too late,” That was the mantra of the ant.

A world away – in bug terms, actually only a few yards – a grasshopper did grasshopper things.  A traditional dance danced to a traditional song.  A game of Reverse Limbo.   Hopping and leaping hopping and leaping getting the rep of not being in one place too long.  A grasshopper’s boots were never parked under anyone’s bed.

La la la la la la live for today.”   That was the grasshopper’s mantra.

Now, I know a lot, I’m very smart and awfully tuned-in, but, to be honest, I don’t know how the two of them – being so different and all – got together.

But they did.

No longer was it this way or that way right or wrong yes or no.  The grasshopper and ant created an us where before there was only a yours or mine.  No longer just different bugs, the grasshopper and ant created  more:

A view looking down plus a view looking around;

Purpose and play all in one day;

In turns open-minded and single-minded;

Rewards from busy and the permission of intimate;

All that, plus leaving room for each to do their own thing.

Here it is, the end of my story.  I thought long and hard about the best way to finish it.

The truth is that the end is the beginning as much as a beginning is an end in itself.  It’s truly true that an ant by itself and a grasshopper alone is never as juicy as the two together.

Two together is the only way to live happily ever after.

The End (The Beginning, as well.)

BEING INTENTIONAL: HOW DID I GET HERE?

erasing brainThe autopilot in us keeps us so far from making choices that our lives go by like getting to work — can’t even remember how we got there.

I tell myself that if life wasn’t so full and whirling I’d be more of a participant instead of bystanding   But getting in “the flow” isn’t singular and it isn’t the same for each of us.  While I suspect that lots of us get caught in a fast flow, I don’t know how many of us feel overwhelmed by it.  Nor do I know how many of us realize how many different “flows” are there for us.

For me, with the cognitive sequelae of multiple sclerosis (and for other people whose chronic illness or hidden disability does the same to them — chemo brain comes to mind) what I remember and what I miss, is the ability to click it out, project after project, day after day, for years.  I stayed on top of things, moved and shook my world.   And I felt I created my world, all I was really doing was joining someone else’s flow.  Nevertheless, by America’s professional and monetary standards I counted myself a success.

Today, I fail to take into account how much life has changed in the years since I moved and shook my world.  Looking back, technology hasn’t been my friend.  Today I’m outsmarted by phones and made (too) aware of bad hair days because of someone’s visual access to me.  Moreover, being lost in the internet is akin to being down the rabbit hole, where time is immaterial or at least irrespective of my reality.

Like a merry-go-round that some bigger kid has pushes faster and faster, I’m dizzy from the motion and tired from hanging on so tight.

Not meaning to be dramatic or negative, let me be both:  if I was somebody else biting into the pickle I’m in, I’d spit it out.

So what does this have to do with being intentional?  Simple.  We don’t have to stuff the whole pickle into our mouths at once.  Nor do we have to eat the whole thing.  Part of the lack of intentionality is being black or white, all or nothing, impulsive.  Choice is instinctively exercised by most (all?) organisms as a way of preservation.  That my cat won’t approach the blow-dryer unless she first makes sure it’s dead and can’t hurt her is demonstration of intentionality.   How odd, then, that multiple times a day the hair dryer beats up the most evolved organism on the planet.

Turning on the computer doesn’t mean I’ll sit in front of it for 12 hours; I make that choice.   Choosing how to live those quickening days needs to be as intentional as that.   Thought-full, not automatic.   Damnable that choosing to get out of the fast flow is so difficult to do.

Ultimately, that final final choice isn’t one we’re allowed to make.

k-cropped-4x6Kathe Skinner is a Relationship Coach, Certified Relationship Specialist whose professional strength is working with couples affected by hidden, or invisible, disability in Colorado where she conducts communication workshops for couples, pre-married’s, the invisibly disabled, and the over 50 crowd.  Kathe enjoys collaborating with other professionals in order to reach more relationships affected by hidden disability.  She sits on the Executive Board of the Invisible Disabilities Association, is a regular contributor to Disability.gov., and is an ardent-and-natural-teacher-without-a-classroom.  She has been diagnosed with multiple sclerosis for over 30 years.  More about Kathe at www.BeingHeardNow.com.Kathe Skinner is a Marriage & Family therapist, and Relationship Coach. Suddenly, she finds herself in the midst of a confluence of “flows”

THE DISABLED EMPEROR’S NEW CLOTHES

Lots of us with disabilities, hidden or not, feel as if we’re a burden.  Needing assistance with basic tasks, like getting from one place to the other, feels like a loss of independence.  Depending on our experience with that quality, a loss like that can be emotionally upsetting.  Thus, we want and need to believe that relationships are unaffected.

In the story of the Emperor’s New Clothes, swindlers were able to part a vain monarch from his money by appealing to his sense of entitlement.  Only the very smart, the very gifted were able to see his new clothes.  There weren’t any new clothes, but no one would say there weren’t for fear they would appear stupid.emperor

Our partners and families are like the Emperor’s subjects.   Secrets emanate from anywhere in the family system, usually set in motion as a way of controlling the environment and the people in it.  Control like that often comes from feeling out of control; in other words, denial of something being wrong sends the message that, like the Emperor without any clothes, the subject is closed.

Imagine if no one had spoken up.  Life would’ve gone along, albeit uncomfortably.  After all, only a blindfold man could be comfortable in the regent’s presence.    The Emperor may have become isolated as others began to avoid him.  But it would only be a matter of time before someone from outside the kingdom was presented at court.

Pretending has its costs.  Not just for the Emperor (who had to have been hugely embarrassed when that little honest kid called him out) but for the townsfolk who went along with the lie.  Pity the poor traveler, too.   There are always good reasons we can cite for living a lie, or for allowing others to live one.  Call an Emperor naked and you spend your time knitting in The Tower.  Or worse.

Feel sorry mostly for the Emperor.  Another word for entitled can be delusional.  When one of us wants to keep secrets about one side of a relationship, no relationship really exists.  Thus, the Emperor was alone although he didn’t even know it.  None of his relationships were truthful even as everyone in the relationship knew the truth.  Living as if is the same as living a lie.

Everyone colluded in living dishonestly.

There’s a problem, of course.  Feelings denied become corrosive; not just to the person swallowing them, but to everyone, especially an intimate partner.  It takes lots and lots of energy to act “as if”; there’s always the chance of a slip-up.  Maintaining a lie means additional lying and the exhausting need to remember the story.

Hard to put yourself in the Emperor’s place.  He could’ve learned his lesson about separateness, about being entitled by disability to keep thoughts and feeling secret.  Being outed may have made him a better man; more honest and willing to take part.  Or it could’ve embittered him further; providing justification for putting lots and lots of people in The Tower.   I choose the ending to this fairy tale.

The Emperor let go of pretense and chose honesty instead.

The Emperor looked for corrosiveness and sought to right it.

Intimacy took the place of separation, and destructive secrecy was banished forever.

Honesty was restored to the Kingdom, and that no punishment befell anyone who spoke up.

Vulnerability was again valued.

And that’s how  everyone lived happily ever after.

k-cropped-4x6Kathe Skinner is a Relationship Coach, Certified Relationship Expert and Marriage & Family Therapist in Colorado where she conducts communication workshops for couples, pre-married’s, the invisibly disabled, and the over 50 crowd.  Kathe enjoys collaborating with other professionals in order to reach more relationships affected by hidden disability.  She sits on the Executive Board of the Invisible Disabilities Association, is a regular contributor to Disability.gov., and is an ardent-and-natural-teacher-without-a-classroom.  She has been diagnosed with multiple sclerosis for over 30 years.  More about Kathe at www.BeingHeardNow.com.