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

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.