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

50 YEARS LATER: IS MARRIAGE A WEAPON IN THE WAR ON POVERTY?

waronpovertyfail

If nothing else, after 50 years fighting poverty, one thing’s clear:  America hasn’t found the right WMD.

Poverty’s still the winner.

Among the most ill-advised social programs developed to counteract the effects of single parenthood on women is one that promoted marriage as an effective weapon.   While it’s true that a healthy, stable marriage between two committed people helps in the battle against hopelessness and helplessness, there may be a population not committed to marriage in the first place.   

Whoever conceptualized that encouraging the chronically ill-prepared to otherwise marry was delusional at best; a bureaucratic butt-kisser at worst.

What were they thinking?

Not in doubt is that solid relationships can be beacons, gateways to education, employment, mental and physical health.  The kicker is that such relationships can’t just be imagined, wished for, or expected without knowing how solid relationship works and passing it on, for at least 5 generations that adopt healthy marital functioning.

Marriage, itself, is a complicated construct that, in the hard sense, pre-exists poverty.  Lack of knowledge is a set-up to failure to anything (imagine wiring a house without knowledge of electricity), especially regarding something as profoundly complicated as building a better relationship.  Put bluntly, how can anyone expect that partners raised in dysfunctional families would, by dint only of wanting to, create a functional one?  That marriage is imbued with such magical powers that, by its very existence, an intricate human condition is untangled?  Or that the people who inhabit those relationships remain, generation after generation, committed to their marriages?

Welcome to the Magic Kingdom.

Children learn what they see.  Further, children seek more than anything to belong and to be loved.  When the cost of having that is withstanding an environment that is counter to family/relationship health — e.g. abusive, withdrawing, uncommitted, adulterous, enabling, permissive, angry, addicted or violent – children often choose unhealthy over healthy.  Immature brains learn that this is what marriage and family looks like.   Even people who strongly react against their upbringing stand the risk of riding the pendulum to the other extreme, becoming overly compliant, accommodating, permissive, rigid, pious, rule-bound.

The knottiness of relationship is that each of us brings a perspective on these experiences that are often different from our partner’s. Often explosive, this confluence paves the way for increasingly unhealthy negative behaviors for each partner as well as the relationship.

Marital success is promoted when partners participate in learning relationship skills.  Partial participation, which seems the rule, doesn’t count; it’s like being “sort of” dead.  Besides, when a parent is struggling to provide the basics of life, little, if any, focus is given to the hard work needed to sustain a healthy union during formal couples education, let alone past its end.

Abraham Maslow put it elegantly when describing what needs to be in place before someone can even minimally “become”.   The condition of being poor, pregnant and female plays out on a stage of basic needs where relationship improvement is trumped by paying the rent.  In the same way, one wonders if self-esteem can be extrinsically motivated in generations raised dysfunctionally.

Poverty in America is generations-old; institutionalized; a mind-set.  It would stand to reason that any upward movement on the psychosocioeconomic ladder would also be a lengthy process.  A multidimensional process.  And a difficult one.   As we see development of the New Poor, Americans’ marital behavior will be interesting to track.  Will there be a relinquishment of the values that inspire healthy relationship?  Will difficulty bind people closer together?  And what will happen to the trillions of dollars spent on social welfare programs that, fifty years out, have been unsuccessful in eliminating poverty?

That social success in other countries is not surprising given the unique social structure and size of the United States.  While a nation as small as Finland, for example, may be socialistic success in reducing the strife of single parenthood, Finland is not the United States. Not in vastness of size, diversity, political structure, and multiculturalism.  Even in the best of situations, marriage is no less multidimensional or difficult; with behavioral and attitudinal improvement also measured in generations.

While I offer no resolution to the multiple dimensions encompassing poverty (my magic wand is broken) better minds than mine have tried and failed.

I do know that a uni-dimensional solution to single mothers’ poverty through marriage insults the problem and ignores the complexity of the fix itself.

For more insights, read Julie Baumgardner’s response to the Council on Contemporary Marriages position on this subject.  Ms. Baumgardner is the Chair of the National Association for Relationship and Marriage Education.

Kathe Skinner is a Marriage & Family Therapist in private practice in Colorado.  Over almost two decades, she has seen low percentages of middle-class couples who have engaged in relationship education continue to apply what they learn.  She calls the ones who have, like Adam and Leslie, “Super Stars” and their existence is cause for a smile every day.  For almost 30 years, Kathe and her husband, David, have been committed to each other and to their marriage.  As Jethro Tull once said, nothing is easy.  Read more about their programs for couples at http://www.BeingHeardNow.com.
 
©2014, Being Heard, LLC

NASA’S PHOTO: PROOF OF GOD’S EXISTENCE?

NASA/JPL-Caltech/McGill

NASA/JPL-Caltech/McGill

What’s a hand doing in deep space?

And what’s it attached to?

Is God just a big hand?

Wait a minute.  Is that a hand at all?

The so-called “Hand of God” is the result of a combination of NASA’s Nuclear Spectroscopic Telescope Array, or NuStar, combined with Chandra X-ray Observatory’s imaging.   God (and Superman) only knows what that pulsaristic, X-ray, and magnetic energy stuff’s about.

That we humans jump quickly to proof of what we so desperately want proof of is telling.

When familiar objects are seen in otherwise vague ways, a phenomenon known as pareidolia is at work.  Examples include seeing the face of Jesus in an apple core or your neighbor’s poodle in a cloud.  When the need to believe is strong enough, we “see” what reinforces what we believe.  Those who are especially adept at recognizing and interpreting such “signs” are attributed with magical abilities that enable them to  understand the past, explain the present, and foresee the future.  They’re called shamans, therapists, or witches, and every culture has them.

Anyone who holds the hand of God is powerful indeed.

Our fervency at making a disconnected connection can be seen everywhere in our lives, not just in questions about transcendence. When we’re always looking for signs, signs are always found.  For some of us, magical thinking beats realism every time:  I’m always a bit miffed when my husband can “explain scientifically” what tingles to believe.  Like yeti or synchronicity.

A peek at the animal kingdom demonstrates how natural it is to go for  glitzy — brightly colored and smiling is more alluring than earth-toned and frowning.  If you still aren’t convinced, go to Vegas.  Shake its pockets and the likely fallout will be all manner of charms, amulets and carved stones.  If you’ve ever played anniversary or birth dates in the lotto, you’re exercising the same belief in magical power.

How powerful is it to “know”?

People have been hung or burned alive for failing to share explanations we want, figure they have, but would rather die than tell. Curiously, we never fault our dysfunctional thinking when plague continues after we’ve roasted all the cats.

Distressed couples or the chronically ill may get caught up in the myths of “other reasons”, blaming themselves or those around them for what is ultimately ours to carry, even when understanding is absent.  Better communication in marriage or the development of chronic illness are examples.

Nevertheless, many of us feel helpless when comprehension fails.  So far-reaching is our need to know that we look outside ourselves for a “magic cure”, “quick fix”, or to blame.  It’s as if we were cognitively incapable of apprehending knowledge by ourselves, alone.

Facing the Great Unknown is frightening.

We call for help that protects, soothes, and explains.

And that’s as good a reason as any to search out the Hand of God.  

Kathe Skinner is a Marriage and Family Therapist and Certified Relationship Specialist.   She’s especially keen on working with couples whose relationship includes invisible disability (e.g., cancer, lupus, hearing loss, depression).  Kathe and her husband, David, live in Colorado with their two cats, Petey and Lucy.  They know that holding the hand of god is as easy as adopting a pet.    
 
©BeingHeard LLC, 2014

IT BEGINS AGAIN. HOLIDAY SHOPPING GUIDE FOR 2014

stressed man giftsI love presents; who doesn’t?  Wrapped or unwrapped, gifts can be delightful.  And while this holiday giving season is over, shopping for next year’s holiday has already begun.

My gift to you is a gift-giving guide of sorts.   Garnered from over a quarter-century of giving presents great and small here are some pointers:

  1. Buy now based on later. That little boy will be a year older by time the next holiday rolls around and what’s on-target now will be babyish.  Fads, sizes, skill levels, and interests often change over time, especially with the under-20 crowd.   For some things and some people, wait to buy.
  2. Revisit the closet.  Set aside space in a closet for cadeaux that never made it to the wrapping stage.  I’ve found that what I was going to present to a friend’s son back then is perfect for someone else’s boy now.  We often forget what’s in our stash; those great buys-that-are-too-good-pass-up.  I once covered my whole list with what I already had.
  3. Shop local.  Bypass the mall to find unique and interesting goodies you may not have to spend big to give.  Buying local supports regional artisans and makes your gift more meaningful.  Be sure to avoid those times of year, like tourist season, when prices are marked up.
  4. Keep track of who got and gave what:  Some things are perpetually on the gifting-circuit and great care must be taken to avoid re-gifting to the gifter.  I once gave a book to a special friend because the title described her so well; turns out she had given the book to me in the first place.
  5. Avoid giving just to give.  Stores are full of meaningless things we give to each other because we have to, are expected to, or are directed to.  When we resent having to give, the gift itself reflects our feelings, like the pack of bobby pins I got in a $10 gift exchange.  Give a gift card for gasoline or food, something everyone can use.
  6. Match your gift to the recipient.  You might not be jazzed about a 4-pack of the latest nail lacquers but a girly-girl might.  And just because you’d want a set of graduated drill bits someone else (probably) won’t.  Who do you have in mind when you give?  Are you giving a gift you want the other person to want, or a gift they truly want?  Do you even know?
  7. Go in together.  At times, a big gift that’s too pricey for just you to give would be perfect.  When groups like families, colleagues or friends honor very special occasions together, the result can be impactful.   Linking pocketbooks enables more choices and lets us give what we want to rather than what we can afford.
  8. Give exponentially.  Most of us, especially children, already have too much. stuff.  Parents, who limit the number of kids’ gifts, are raising children who aren’t overindulged or numbed with plentitude.  Giving to toy or clothing drives gets the overstock to children in need; when children themselves are involved in the giving, the original gift is given many times over.  Likewise, a gift given to a helping organization in someone’s name is thoughtful and caring.  Think of how many people such a donation can touch!
  9. Pass it on or throw it out.  Like other fun lovers, I’ve been known to have an out-of-season holiday party as a way of getting rid of the what was I thinking? stuff.   A battery-operated spatula or cartoon character that grows grass out of its nose is too goofy to keep to yourself.  Take a tip from professional organizers:  give it away or throw it out, but get it off your hands.

For several years, kitties Petey and Lucy have taken the place of store-bought presents under Kathe and David’s Christmas tree.  The absence of ribbon and wrap has given them both a clearer view of gifts, both given and received.  Kathe Skinner is a Marriage & Family Therapist and Relationship Coach with a private practice in Colorado Springs where she specializes in couples work.  Find out more about Kathe at http://www.BeingHeardNow.com.

‘TIS THE SEASON TO LOSE BIG CLUMPS OF HAIR

stressed christms“God bless us, every one.”

I think Tiny Tim got really chilled waiting in line on Black Friday.

And Cyber Monday.

Come to think of it, somebody told me he was at the mall the other day, too.  Amazing, since he hit the deck real hard when he lost a tug of war over some on-sale Levi’s.  Gotta give him credit for gettin’ back on the horse.

Poor guy.

We had coffee at his house the other day.  I didn’t say anything, but you shoulda seen the place.   Like Santa’s workshop, but no ho ho ho. Bags from Macy’s and Target and  Aeropostale with who-knows-what in ’em.  Honestly, I don’t think Tim even knows.

Tim told me he couldn’t resist.  “So what’s left over’ll go into the storage locker with last year’s stuff.  No big deal.”

I don’t wanna say anything, but he seemed a little stressed.  Okay, okay, a lot stressed.   Nasty nightmares, even when he could sleep. Way overspending.  I gotta say, the marriage ain’t lookin’ so good, either.  Vicky’s back at her mother’s; said she just couldn’t bear to hear one more ***damn ring-a-ling-ling.  What?  I didn’t tell you?  Tim sat on a bag of bells, didn’t notice, and they somehow worked their way into…well, you know where.  Actually a nice sound when he moved; a little muted, but what the hey.

All that shopping, gotta be listed somewhere they talk about sicknesses.  But you know Tim; can’t tell him anything.

If you ask me, I think all this joy and peace and fa la la la la is killing him.

So, hey, me and the missus, we’re gonna do this 90% off warehouse sale.  Gonna go early.  Like before the sun’s up.  Wanna come?

Kathe Skinner is a Marriage & Family Therapist and Certified Relationship Coach.  She has a small stash of presents for somebody-in-the-future but has considerably whittled down her holdings.  She’s a firm believer in the concept of ceasing all manufacturing of giftable goods, believing everyone should recycle stuff by shopping at one big garage sale.  She and husband, David, live in Colorado with Petey and Lucy, kitties who leave little presents for them all year round.

©2013 Being Heard, LLC

THE RORSCHACH WENCH.

the-aestate-color-rorschach-inkblot-ink-blot-green-acid-art-print-painting

I keep a book in my office and if I had a coffee table, it would be on it.

It’s red, with a coffee spill down the front that’s dried into a Rorschach-kind of thing.  Nifty for it to be in a therapist’s office.

Inside, dozens of clients have written their “should’s”.

It’s not instructive to describe what they said; more than likely, their self-flagellations are the same as  yours.  What catches the new subscribers is how similar their self-flagellations are.  Put another way, there’s nothing special in their dysfunctional thinking.

Back when I was exploring how should’s get perpetuated, I was stunned and amazed to find myself described in the exact words I’d always used in describing my neuroses (notice I used the plural).  Admittedly, there was disappointment in seeing myself laid out like some common Rorschach wench.   I suspect that others, too, hold their depression, anxiety, mania, whatever, as a sort of badge of differentiation from others.

For others, as it was for me, depression is powerful; it was the coin of my realm and the way I bought into the realm I inhabited growing up.  Depression can get attention, especially when nothing else seems to.  That can be true in a  marriage where one partner exists with an invisible disability.   And just like for the kid who acts out, it’s attention of some kind, even if it bears a high price.

Being a therapist, consequently, has been double-edged: one edge cuts through the dysfunctional thinking, the should’s, the irrespective unfairnesses; while the other is sad to see those defenses so cut down.  What I do in my office forces me to be embarrassed at my own mental laziness.  Being depressed is hard; so is being anxious or manic.

But hey, it’s hard even when you’re not.

Kathe Skinner is a Marriage & Family Therapist and Relationship Coach in Colorado Springs, Colorado.  She comes by depression naturally as well as artificially and has recently added anxiety, for which she can thank multiple sclerosis.  Petey and Lucy, the two hooligan cats Kathe and David share their lives with, are too annoying to let depression settle too quietly in their home.  Kathe and David get out of the house by teaching partners the communication skills their relationships need.