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….



  1. Nick Dupree said,

    they’ve stolen from me and my family NUMEROUS times! it’s a bad problem, and keeps some away from home care (& institutionalized).
    I had a parent tell me, “the PCAs show up drunk or not at all, they steal the money, I had no choice but to put my daughter back in the institution.”
    I never accepted that going back to an institution was OK. We desperately need to improve home care. Higher pay, for starters. And what about penalties for stealing from PWD? my gut says they should be harsh: pay it back plus 50%! right now, the agencies don’t even fire them–they’re just moved elsewhere!


    Added you to my new blogroll 🙂

    • imfunny2 said,

      If the workers in institutions and SNF’s (Skilled Nursing Facilities to the uninitiated) get certain pay and benefits package It just seems to make sense pay closely comparable wages and benefits etc if they are looking to do community PCA/full 24-7 nursing care work.

      And it’s *cheaper* than the (stated and inflated no doubt) financial cost (to say nothing of the emotional cost) of institutionalization…

  2. pennylrichardsca said,

    So much is entangled in trust, privacy, personal space. We don’t sleep much around here–haven’t, ever, in my son’s life. We manage, but of course we’d love to sleep more/better, who wouldn’t? People say so often, “why don’t you get someone to help at night, so you can sleep?” And I think, “wow, yeah, I’d sleep like a baby with a stranger hanging out downstairs with my kid.” I know some folks can make such arrangements work, but … trust, privacy, personal space… seems like a big leap to take.

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