WHEN A CAREGIVER DIES

June 2, 2014Kathe Skinner, M.A., L.M.F.T. 2 Comments

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.

Kathe 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.

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

January 10, 2014Kathe Skinner, M.A., L.M.F.T. Leave a comment

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

THE RORSCHACH WENCH.

December 12, 2013Kathe Skinner, M.A., L.M.F.T. Leave a comment

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.

OLD LOVE LETTERS FROM YOUR PAST: GOOD FOR YOUR MARRIAGE.

December 5, 2013Kathe Skinner, M.A., L.M.F.T. 5 Comments

I’d forgotten all about them, so when my husband plunked down dusty, dirty old boxes for me to go through, I inwardly groaned at more work. What I found caused me to turn off the TV, plop down on the floor, and get teary.

Some things are personal. It’s okay, healthy even, to keep private some things, especially from your partner. You disrespect all three of you by telling all, or worse: using an old relationship to make your partner angry or jealous. What passed between you and an old love is about as private as it gets and ought to be kept that way – unless it’s an STD in which case your partner knows something anyway.

Here’s why those almost 50-year old letters are meaningful to my marriage today.

That was then. Old love letters bookmark a time never to be recaptured. Memories are wrapped in words that are still breathtaking, kind of like a favorite old movie watched over and over again. That was long before kids and careers, mortgage payments and personal tragedies – all the water that’s gone under the bridge. Anyone who’s tried knows wishing doesn’t make it so. If you have the chance to go to a school reunion, take it. It’ll make you careful about what you wish for and maybe keep you from trading one used car for another.

20/20 Vision. How many times have we wished for hindsight? Knew then what we know now? Old love letters give you an opportunity to jump between realities; to see that your life has become far richer in experience than what it was then. You wouldn’t make the same decisions today because you’re more knowing and because you know more, too. Seeing clearly isn’t just about having new glasses; they only work when you wear them. Maybe the past gets romanticized because it was so free of all we see and know today. Most of what happened long ago was drama without impactful consequences; no wonder those were the best days of our lives.

An ego-boost. Those old love letters described things that, ahem, were personal. Very personal. After reading them, I’m likely to dial up some oldies, suck in what I can of my tummy, and turn my best side to the mirror. But, at 60 years old plus, I can’t see much of the hot-looking girl in the picture I hold. Those letters dialed back the scale, dialed back the clock, and let me be Cinderella waltzing a horizontal dance with someone who’s not the prince of my heart today. Part of what’s swoon-worthy are the words themselves – I can always be bought that way. That I was described so beautifully made me feel beautiful every time I read them. They still do.

Appreciation for today. My high school years were spent in Hawaii – a place imbued with the honeymoon-like magic of new love – during the powerful and poignant Age of Aquarius. Juxtaposed with rule bending and breaking was the rule-bound experience of Viet Nam. But my memories, all these 40+ years later, pumped as they were by the unique history of the late 60s, are no less vivid and meaningful as anyone else’s. Reminders of the past, like the letters I re-read, show me how much more I have to love now. And even how much better at it I am.

Didn’t Want Him, Anyway. Back then, love was pretty black and white; no mortgages, usually no kids, definitely no wisdom. Today’s love, mature love, knows that love can be fickle and to keep it requires attention and effort. If I’d gotten on a white horse (or in a VW van) and ridden off with my first love, the scenery would look nothing like it does now. I like the bourgeois creature comforts most aging hippies fell for, too. Honestly, while I would’ve made a few changes along this long, long way, starting over with the boy who wrote those heartbreakingly beautiful letters wouldn’t have been one of them.

Having moments of nostalgia and longing for the past are natural. Keeping those moments alive is part of the romantic, fanciful, non-threatening part in each of us. Humans are unique in the ability to fully remember the past. But know that bringing it forward, unaltered, never works.

I finished reading the notes the other night, then broke down the dusty box and put it in the recycle bin. The few I saved still whisper about what was and will get packed away until I again need to feel delicious. The touching wish left behind is about gifting the past’s richness to my marriage today.

Kathe Skinner is a Marriage & Family Therapist and Certified Relationship Expert who shares with couples how to keep love alive and growing. She encourages them to write love letters. Kathe, and her husband, David, have been married nearing 30 years; their love is shared with cats Lucy and Petey, both of whom send messages in other ways. In that dusty box Kathe found the first card ever sent to her by David; odd she kept it since it wasn’t romantic at all.

WOMEN’S LIB IS A LIE

November 4, 2013Kathe Skinner, M.A., L.M.F.T. 2 Comments

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 guys. 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.

INVISIBLY DISABLED OR NOT, 5 GOOD REASONS TO REVAMP YOUR LIFE

October 8, 2013Kathe Skinner, M.A., L.M.F.T. Leave a comment

If you’re like most of us, change is uncomfortable. That applies whether we’ve asked for the change, or not. Change can be as small as changing your haircolor or as big a deal as moving across town or across country. Some adults mimic Peter Pan’s Lost Boys, adamantly insisting they won’t grow up. If that’s you or someone you care about, check out five good reasons it’s a good idea to view change as a relentless part of being alive:

Gain Perspective: I’ve got an old pair of glasses I wear around the house. While I’m used to them and they’re comfy, the truth is that I’m limited in what, and how well, I see. Not seeing clearly what’s in your life is like a horse wearing blinders. True, you remain focused on one spot, but the trade-off is how much gets passed by. What comes to mind is the professional focused on business success who complains, years later, about the unattended soccer games and school plays.
Freshen Up: Habit is soothing; knowing what you’re doing and how to do it takes away our fear of appearing incompetent. What’s left out, though, are new experiences. Meeting new people, going to new places, trying something different are examples of keeping our brains engaged. Brain science suggests that people who remain engaged stave off the negative side-effects of aging.
Grow Up: The 60s are gone, so are the 90s. Even if those were the best days of your life, those days don’t reflect your world as it is now. If time-travel was possible, seeing what lies ahead would be an interesting and fun exercise. Many cinematic characters have been given this gift — Jimmy Stewart in the classic Christmas film “It’s a Wonderful Life”. What would you learn from a trip to the future? And what would you have to change now in order to assure it? So what’s stopping you?
Get What You Want: Have eyes set on a certain job? A new car? A life partner? When plans are made to acquire what we want, change is prominent in the mix. For example, attracting a partner may mean you have to work on issues that are getting in the way, like trusting the opposite sex. When the burden of old thoughts is released, the domino effect of change starts in motion. The effects include being more comfortable in your own skin, smiling more, being more positive about life. Your changes affect everyone else in your life. Everyone. Amazing, huh?
Keep What You Have: When partners say, “That’s not the person I married!”, I say, “Good!”. Aside from Bunny-Love-Sex, who would trade how the years have forged a new and different partnership? Adding children, for example, insists on change from an “I” stance to the “we” stance of co-parenting. All relationships insist on good communication and flexibility in order to be ready for change. Without it, no relationships can grow,

Kathe Skinner is a Marriage & Family Therapist and Relationship Coach working especially with couples experiencing the effects of invisible, or hidden, disability. As a military brat, growing up changed scenery more than for most. As a child, she remembers seeing the black and white television production of Peter Pan. Trying to fly off her bed became a months’ long obsession. She lives her grown-up life in Colorado with her husband David, and their two cats; in a world of change, Petey and Lucy ground them. More about Kathe and what she does can be found at http://www.BeingHeardNow.com.

THE JURY’S OUT.

September 30, 2013Kathe Skinner, M.A., L.M.F.T. 1 Comment

I’m a fine one to talk.

“All change implies the acceptance of loss” is the line I berate my coaching and psychotherapy clients with.

Loss of function with invisible disability carries with it more than just the loss of “being able to…” It’s how others’ attitudes might change. Or how communication in a relationship — married or not — is impacted.

Recently emailing with a colleague, another permutation appeared: “All loss implies the acceptance of change.”

These days, for me, that applies even more.

Kathe Skinner is a psychotherapist and relationship coach living and working on Colorado’s Front Range. She has been courting acceptance of the changes in her life for most of this year. The results aren’t in.

Couples Who Talk

get results right away.

Tag married