Another thing the able just don’t get….

April 19, 2009 at 12:17 PM (Uncategorized) (, , )

Why it is so important to trust your caregiver, and why even that isn’t enough….

I’ve read on other blogs about doctors assumptions about non-verbal patients, about so-called caregivers stealing personal effects right in front of their owners…

When I discuss this with the able, they say “Do you *really* think that happens? Oh I can’t believe *that?*

The level of denial just astounds me:

So I’ll share a story about a ‘caregiver’ to my perfectly able cousin….It can happen to the able too….

When we were teenagers it was a huge deal to record popular songs we loved…boxes and boxes of cassettes, testifying to waiting tensely in front of the stereo and pouncing on the record button when the good stuff came on.

My cousin was childlike. Not childish and not impaired. She just never lost the love of the things she loved when she was a girl or a teen. Loved Christmas carols so much, she’d pull them out and play them in July, if she got sad or blue.

Her musical taste I guess was Top 40 + . She liked all the stuff that was played endlessly….but she also had a nose for the AOR (Album Oriented Rock) stations that *stayed away from disco* Thank God.

We both did massive recording, but she numbered each of her completed tapes, and made a list in an old greensheet notebook of each song in order on each numbered tape, so that if she wanted a specific batch of songs or a single one she could go right to it.

Even near the end of her life, in a nursing home, she called the local oldies station every Saturday night and requested a bunch of songs….They knew her trouble and played as many as they could….

Her family was a dark place. Drugs were around, and alchohol at a very young age.

Everyone was using, including her next youngest sister (except her youngest sister, who would take it up in a year or so anyway and her father, and he could or would ? do nothing to stop it.) I stopped going to that house shortly thereafter when a dispute settled with kitchen knives landed her in the ER….

In 1982 she had a full time job at as a fast food manager. She bought the most crazed tricked out stereo system I had ever seen….and would demand time in the attic alone, without anyone else high or drunk in the mix to flip through her list and replay the best.

Then she went to work one afternoon about three months into the job…

And came home… The dog and the house were quiet. Everyone was there.

Headed upstairs to hear some tunes…

And every part of that stereo system was gone.

(this next is the truly nasty part)

Every single homemade tape was also gone.

She knew it was her mother and her mother’s boyfriend, or her sister (s)….All of them cried and denied and lied so she never knew which for sure….

She called me, crying and told me what was up….

So I got my spare, pathetic little manual tape recorder, and four of my homemade compilations that had stuff she liked, and hit the bus that night.

I said it was a loaner, until she got some real stuff again.

I couldn’t believe it. All that hard work….all that painstaking listening and writing and numbering and storing…..

Sure, the stereo itself would have gotten a bit of moneyfordrugs…and that was bad, because she’d worked some serious overtime quickly when hired to get the system

But the time to take to bulk erase and possibly resell the ‘blank’ cassettes….” That was just personal and mean spirited and cruel….

After all, she’d been so “mean” to her mother…

Cooking and Cleaning and raising her sisters so her mom could waste her days with candy and romance novels through the smoke and surrounded by dust and dirt….

Shoveling the driveway because her father was too far gone with COPD to do it.

Her notebook with the lists had not been stolen… So, incredibly… She renamed it her ’sob’ list (sob for crying, not for the B word.) and began again, in her time off….she bought a cheap system, gave me back the loaner while actually crying with gratitude and made it clear she’d go to the cops and turn her *entire* family in if they pulled a repeat burglary…

Once she married, (1985) her new husband having heard of this f***ing disaster, bought a truly amazing system for her so she could continue the restoration in high style.

It took her seven years.

She called me in 1989 to tell me her list was again completed (although in a different order…there were all these arrows in the notes now, and conversions from one numbering system to another)

Ok able….now here’s my point.

This happens to your disabled friends and family *all the time* in the care of strangers.

Stuff gets taken by caregivers, because part of the reason the nasty ones join the racket is to see if they can steal anything worth selling.– a similar motive to the soulless ***** that stole my cousin’s stuff.

And people with impairments generally don’t have the bucks to replace what gets taken.

If you’re helping a friend or family member set caregiving up….

If there’s a way to run a backround check…do it.

Take note of the things in the home and check when you visit to see if all looks ok…

Because the person with the impairments might be too scared to tell you, or unaware that something is gone….

Permalink 3 Comments

Paying calls.

March 16, 2009 at 10:11 AM (Uncategorized) (, , , )

So yesterday I call the family, and those friends I know will call me back by phone….

To see if they still had jobs:

One sister in law will be laid off by May. (I hope she decides to move somewhere warmer)

Potential layoffs and pay cuts face the Las Vegas contingent.

Involuntary furlough days in Columbus Ohio.

And a friend in Loveland hasn’t yet let me know.

An odd (but really good ) piece of news:

Looks like a family member who has been basically reclusive for the last four and a half years now leaves the house twice a week to play bridge at the library…no medical intervention no medicine…

WT  …Efffing F…?!  I mean it’s great but where did the Impulse to Reconnect With The World come from?

Inquiring minds would like to know, but I don’t think an answer will be forthcoming.

I even went so far as to inquire of Deity, but as is so often the case, Deity remains silent on this issue.

And I am so sad about the state of things between myself and my otherwise wonderful family.

We make each other physically ill when the subject of politics is broached.

(I even have some really politically incorrect items, small stuff, that I agree with them about, when I try to set the tone, but it’s not enough.)

It never used to be like that, and I have voted differently than they for at least the last fifteen years.

I just can’t be a cheerleader for the folk that would vote in people that would eviscerate:

Community supports.

Medicare

Medicaid

SSDI

SSD

Food Stamps

Unemployment

Other Welfare sorts of things.

Simply on principle, if they got the chance.

Not just reform it.  Remove it.

(It must be quite easy  to vote to remove something on principle that you are absolutely certain you yourself will never need.)

Maybe its easier for them to do it since I don’t live in Ohio anymore…

They *care* about me. They help me out… Absolutely they worry for me.  I have no doubt of that.

But…

They haven’t been direct eyewitnesses to my try-fail-try-fail work cycle of the last decade.

Never been present when a roomate had to clean up after I got sick.

Never been present when the mental health necessitated inpatient care all on it’s own…and my mobility was forcibly taken away…

And more and more ‘able bodied’  people:

Are living in tents.

Losing jobs

Never mind.  Just never mind.  I’ll not win that debate with them.

Ever.

Permalink Leave a Comment

Mental Illness, Cycling, Responsibility

February 23, 2009 at 1:52 PM (Uncategorized) (, )

I’ve been looking back over the past three years or so…

It’s fairly clear that the windows of effectiveness for new meds or strategies to handle what I percieve to be an anxiety disorder are shortening.

It’s not that they aren’t efficacious initially, it’s that the time between “Yes, this is helpful,” and “Ok, this isn’t working, lets look at other combinations….” is decreasing. I have meds now, they’re holding me above water, but situationally, the head’s in a bad way.

I’ve seen family members on both sides be left without recourse, mentally speaking, when the bottom fell out, either by denying anything was wrong, or delaying help, or in one case outright abandonment.

I have a great aunt I was very fond of…

When I think of my connection with medications that help, or my present search for help *before* I get into a situation….

I’m very grateful that I’m not that great aunt in 1935.

When my father died I recieved a box of his personal effects.

In it were a small amount of correspondence, a young man’s picture and a wedding announcement concerning my great aunt.

I’ll call her Jeanette and him Bill.

He was a handsome young man per the small picture. My great grandmother seems to have had reservations about him for her daughter, but was never explicit about what they were in the correspondence I read.

Jeanette and Bill were married in 1935. Jeanette may or may not have had diagnosed depression at anytime prior to the wedding. The newlyweds either lived nearby or with Bill’s mother.

He left when war came.

And, when the war ended, he did not permanently return. I don’t know if he came back for a short time and left again. What I do read in the letters is that apparently without benefit of divorce, he abandoned my great aunt, went to New York City and found a second partner, and he was listed as working somewhere in the Empire State Building in 1948. He also ceased to communicate with his mother. Whether or not my great aunt’s depression was present, and part of what influenced part or all of his decision to leave, it manifested in an extreme way in the years after they ‘rediscovered’ where he was.

She sends him lucid letters at first gracious even, a gentle bewilderment couched in educated language, pleading on behalf of his mother and herself, asking for an explanation, a reason, any construct that would let her understand why he left.

There is no answering correspondence from him.

(I assume he’s dead now. If I ever had hope of finding that guy, before he died, his new family would have been embarrassed beyond belief, and he would have been the worse for wear.)

Two years later, letters show a sharp drop in the physical ability to print or handwrite neatly (the style of handwriting looks worse than mine when I was eight, and my cerebral palsy affects that.)

Then, there are discussions my great grandmother wrote to medical persons about the state of my great aunt’s mental health….my great aunt lived with my great grandmother as of at least 1950. My great grandmother did what she had to do to support my great aunt, but clearly indicated in correspondence to her (it’s telling that they couldn’t talk about these things but had to write them out….) that it was time that Jeanette became self supporting.

Jeanette became my great grandmother’s primary caregiver, while holding down a job at a steel company….(an office post of some sort)

My great grandmother, as I’ve written before, was a dominating, strong, intense personality. It had to be emotionally draining, to accept over time that Jeanette’s job (s) in life were a ‘job’ not a career, getting intimate with a typewriter and then caregiving on the evenings and weekends. There were no children.

Jeanette did take a stand about two things, though and I think, along with treatment or meds (I don’t have details on those. ) there were two avocations largely responsible for her long stretches of ‘acceptable’ mental health during the next thirty years.

Birdwatching, and extensive travel on her own.

Once she was working and handling her share of expenses, I imagine either she put some funds away for this or was helped to do so by her mother…who didn’t strike me as so self-absorbed that she wouldn’t see the lonesomeness or diffiulties of her daughter’s postition.

It is my understanding she had a relapse in 1965. I never saw her during those times….by 1967, she didn’t mind being one of several famillial baby sitters that saw me perhaps once a week….

She saw Asia, the Phillipines, Easter Island and other places on her own…and loved to show pictures or tell stories about these places to friends at the nearby Presybyterian church, or to me….

I think she wished my eyesight were sharper, because she could detail a species of bird at a moment’s notice and by the time I could track toward the tree, the bird would often have ‘dissapeared’ or moved.

When my great grandmother died in 1979, or 1980….

Jeanette fell into an extreme depression from which she did not recover….

This type of depression is quite prevalent on *both* sides of the family tree.

My alcoholic father became trustee of Jeanette’s estate….which he partially looted. (His moral nadir.)

She had to be placed in a skilled nursing facility, where she died in 1991.

I’m trying not to be any of those people, or others who even under care, actually grew violent in their old age… I’m trying to adress these issues proactively, so I don’t see that level of destruction in my cognition, now or later.

She deserved better, damnit.

We all do.

Permalink Leave a Comment

A member of the family.

February 1, 2009 at 1:44 PM (Uncategorized) (, , , , , , , , , , )

No, I’m not related to him. He’s a big cheerful guy who is most comfortable in the outdoors on a boat, fishing or not, or even the occasional hunting trip.

He’s also a Star Wars geek, and a carpenter… and he still calls me ‘Cuzz.’

He was my cousin’s husband, the cousin that always felt like my sister, before she passed away after a seven year long fight against complications of diabetes, she ended up with both visual and mobility impairment…It was a long difficult time for both of them.

In late 1991 they came to our house for pizza. Black humor often takes center stage when you feel overwhelmed by the fight your body is fighting.

My cousin Tiffany said, “Hey, do you *believe* how many separate diseases are in this room?”

My late husband, never one to shirk at odd conversation said, laughing, “Let’s make a list! ” He said, “Hmm, I’ll start. Hemophilia and AIDS.”

I took the next round. “Cerebral Palsy, Asthma and Cancer…”

Tiffany was next…”Diabetes, sarcodosis, glaucoma, kidney failure…”

And her husband said, “Hey!…I feel kinda left out!”

We couldn’t stop laughing for ten minutes.

It’s very clear that we’ve kept the connection because somehow, I don’t know why, he has a small obligation somewhere in his head that we should keep in touch and that he should look out for me in an appropriately small way.

One of my most profound regrets is that I didn’t spend as much time with them as I think I should have when her illnesses accelerated. I could mealymouth around it, but the cold hard truth is: after just finishing myself and the spouse’s long nightmare with my cancer and his terminal illness in 1993, my selfish want was that I *never* had to see another loved one suffer up close, never again…and so out of pure selfishness and fear, I was never close enough for very long. I did rejoice with them both and visited for longer stretches after she had a kidney transplant that freed her from the extreme discomfort of dialysis.

Near the end in 1998 I visited her in the hospital and tried to tell her who I was by sign, since she was blind and most of her hearing had eroded…I think she knew, because she smiled.

At the cemetery, he and I were crying. We looked at each other and moved into this huge hug that many misinterpreted…they thought he and I would be the ‘rebound’ sort of thing for each other…It wasn’t like that at all.

We’d both seen spouses through unspeakable things, and had part of our own innards pulled out emotionally in order that we support them as they needed.

He is the one person who understands as much of the entire scope of what I went through as an outsider can… and he believes, I think, that I am the same for him. Comrades in arms, in a way.

He remarried this decade and she’s been great both to him and for him, and …we get along well.

And after all the **** that his life has had in it….

He lost his job in December.

He has no health insurance.

He has no money (and by that I don’t mean even 500 a month. I. mean. none. zero.) He’s applied for SSDI Medicaid, Welfare, food stamps but those things take time.

His wife cannot work.

His electric, cable, phone have been shut off.

They’re repossesing his car next week.

And his landlord has indicated that unless the rent is paid in two weeks they will start proceedings against him. (When I heard this piece last night, I googled Ohio’s legal-aid website, gave him the number, and told him to call from his brothers phone, so they can stop the landlord from trying to evict him…I can’t do much from here, but by God, I owe him at least an effort to keep a roof over his head. )

But, he won’t be home this week anyway…

Because they’ve found throat cancer. The hospital he’s going into for the first round of 96 hours of chemo+radiation is helping him with an indigent program intended to ‘tide him over,’ until the benefits kick in.

There are two, single, very bright spots in all this.

One, from exploratory results, the cancer has not, metasisized. It is confined to a single source only.

and Two…the hospital he’s in…is the same Bigshot Hospital that saved my ass from cancer back in 91-92.

So, they’ll nail the cancer, I’m certain of it. He’ll walk out of there cancer free sometime in the future just like I did.

He’s chosen to be my family, and I’ve chosen to be his…

It’s interesting….because some parents or family members of person’s with disabilities can show ambivalence or negative emotion that they have this person in their lives…a relative…that they believe has made them work harder as a parent or family member than they would have had to do if the person was temporarily able-bodied.

I love my genetic family, but honestly, sometimes…

I love my friends, my family-of-choice a tiny bit more.

Because there are the occasional fights, the disagreements…the drifting away…

But not ambivalence. They want to hang out with me knowing (by this time, my sometimes difficult nature). They take me as is, where I am…no questions.

So I’m praying for my Cuzz today.

And I wish to any-gods-that-ever-were that the Congress would suck it up for health’s sake and *pass something,* so that he can have a *job* when he recovers.

Permalink 2 Comments

A Christmas Memory

December 21, 2008 at 1:43 PM (Uncategorized) (, , )

So, I’m between eight and 13 years old….

The Christmas Rule in our house was “No Waking of the Parents for The Opening of Presents Prior to 8:00 am EDT on the 25th.

Generally, even though we didn’t do church, we went to the Basically Protestant (but not evangelical) Christmas Eve thing. Songs, Carols, a sermon about what Christmas really ought to mean..and then candles and home…

And for that one night, there was geniune mystery in the house…lights were dimmed so the tree could show off… Cookies, and eggnog were had by its light….My father, the uapologetic alchoholic would go on to wreck other Christmas Eve’s but he hadn’t started yet (or at least had the courtesy to wait until I was asleep..).. He would read the Nativity story in Luke, and sound like he genuinely gave a d@mm about the journey, the pregnant woman having to bed down in a barn…and the initial WTF reaction the sheperds have, followed by belief, and mystery about this baby.

Then I’d try to go to sleep…and search for my own personal Star…I imagined, even though no one’s theology said this, that the Star reappeared every Christmas Eve…to confirm it was a magical night. I’d always pick the brightest star I could see, assign it the Star’s role…and finally fall asleep…and manage some….

The worst year was when I woke up at two a.m.

And knew there was no way I was going back to sleep. So I read some of my favorites, Robin Hood, and some cool story about the first school for service dogs, and Little Women.

By five am. I was damn sick of reading. So I turned my light off, and went into the living room, missing the creaky floorboard in my bedroom on purpose…to carefully prod at the stocking, assuming I’d be able to make sense out of the bumps and corners, but too scared to actually sneak anything into my bedroom and *look.* Same for the big boxes…I prowled around the corners of the tree, crawling, and examining various boxes, putting them *exactly* back where I found them.

I maybe had a clue about one present after that….but that was all.

I snuck back into my room at six and watched the morning get there.

By 7:45 I simply could not stand it. I *ran* out my door, ran through the middle room and threw open the master bedroom door, and actually leapt onto my parents’ bed successfully, and said. “I can’t *Take* it anymore…I’ve been up since two, can we pleasepleaseplease open *Boxes* Now?????!!!!”

Even then, the Rule held, because Mom insisted that we brush our teeth and put on robes (for the picturetaking of course.)…and she made sure it took how long?

Exactly 15 minutes.

**********************************************

It’s long ago and far away Dad’s gone…Mom’s her own kind of distant…but I’m making the cookies myself this year, and have the same Christmas Music (Eugene Ormandy Conductor of the Philadelphia Orchestra 1959, “The Glorious Sounds of Christmas,” ) and have a Christmas Eve service to attend…

Alone…but not quite alone. Presents scaled down… but not quite gone.

(“The Economy, you know…” .) (Scrooge would be cackling with glee somewhere if he was real)

Because the mystery, as Doctor Seuss has said, can show up without “packages, boxes or bags.”

********************************************

Happy Holidays.

Happy Hanuka.

Have a Cool Yule.

Happy New Year.

And, “Merry Christmas, to all and to all a good night.’

Permalink 1 Comment

Next page »