Donuts, Ghosts and Stuff

Did we go on a glamorous vacation? Haven’t been blogging because we’ve been on a cruise ship or at a mountain top resort?

Nah.

There’s a bunch of stuff to report. None of it is out of the ordinary. It is stuff that all people – not just caregivers – encounter. But care giving amplifies it. That little extra need, emergency or other bit of stress takes all of life’s other demands and makes them into a stinky pile.

So, donuts. Well, not donuts – The Donut Hole. Those who entrust some of their health needs to Medicare cringe at the term. It’s called a “coverage gap” which translates as a bureaucratic game that makes total sense to some office wonk someplace.

You go in to pick up your monthly prescription refill and, voila, the smiling pharmacist tells you “You’re in the donut hole.” It’s like landing on a bad square in a board game – you go backwards, or lose a turn, or, in real life, you lose a bunch of money.

We went to pick up two (yes, two) bottles of meds and dropped about $400.

That’s the donuts part. But stay with me, I have to tell you about the Ghost. And this will all tie together and explain why we haven’t been blogging.

We bought this house from a widow grieving the cancer death of her husband, Brian. Brian, like so many South Dakotans, believed in doing all of his own home repair and maintenance work. Seriously, there are true tales of guys mowing their lawns twice on their days off, because they want the yard to be just right. And they consider that fun.

The late Brian considered himself an electrician, plumber and more. Oh, so much more. Melissa and I started joking about the “Ghost of Brian” when various house and yard glitches began to manifest, generally tied to work Brian had done.

In the last two months, Brian reached deeply into his bag of tricks:

He’d put his own custom shelving into the master bedroom closet. Of course he simply screwed it into drywall rather than anchor it. Crash, boom, kerplunk went the whole closet. We picked it all up, cleaned it out and called in some pros. $500 later, it’s a pretty nice closet.

A massive water bill and constant swamp spot in the back yard revealed that Brian’s DIY sprinkler system had a leak. We had some savvy friends try to fix it, but the leak continued. We finally brought in a sprinkler pro on a neighbor’s recommendation, and he was a grandfather with decades of experience. He had to make trip after trip to finally diagnose and fix the problem, which included things like valve #1 sending water to sprinkler station 6, valve #2 to station 3, etc.

We found the sprinkler pro standing in our driveway, smoking a cigarette with a far away gaze like he’d just been in combat. He got it fixed… but that was another $300 to go with Brian’s magic closet and the donut hole.

Now the one fixture that works in Brian’s custom light array in the bathroom is flickering on and off. It was cutting out the other day and Melissa said, “Brian, knock it off.” It seems to be working for the moment, but I’m sure it’s an electrician visit waiting to happen.

Then there’s stuff – Joey’s an adult and programs that were subsidized while he was a minor are on our dime now. His afternoon “after school” program is now twice what we used to pay. His transportation costs are no longer reimbursed.

What has all of this to do with a lack of blogging? Well, I’ve taken a second job. There’s very little time to put words together.

Multiple jobs are a South Dakota thing, too. Everybody here has two or more jobs, like these folks,

That leaves Melissa with almost all of the Joey duty, and the care giving hits just keep on coming:

He’s figured out that he’s bigger than her and can use that to resist cooperating with her;

He chit chats with himself and flings repetitive questions and phrases at her until it’s like he’s drilled holes in her head. This is brutal on the weekends, when he’s home all day and the din never stops.

Plus we just got the deflating news that the wait list for Joey’s residential placement is looooooooooong and moving slowly because they can’t find enough staff to open more group homes. Care giving stinks so much that you can’t even pay people to do it.

Financially, our best move is for me to drop dead. I’m super well insured, and I’m vested in a pension through my primary job that will provide monthly checks to Melissa even when I’m kaput. (I have several wives in other states who don’t know about this so please keep it to yourselves).

But I’m stubborn and keep hanging in there. Stupid hyper-responsible caregiver personality.

Behold, the I-don’t-care-giver!

So I’m bringing out my inner bad guy, the I-don’t-care-giver. (Just made that up. Are you impressed?)

The care giver was the weepy guy who went out to find a new VCR after his son with autism push-buttoned the last machine unto destruction.

Thank God for a last minute light bulb appearing above the care giver’s bald head. A glimmer of memory sent me into a file to find that the broken VCR was still under warranty, so off to the big box vendor I went.

computer replace They gave me a new one.

But that came after an infernally long time in line with all kinds of people and their broken gadgets and their endless questions. All of the jokes about old people and technology (I count myself as one of them) are true.

As I drove home with the new item, the I-don’t-care-giver began to emerge. I (it) did not go and dutifully connect the new VCR for the kid to abuse.

I (it) did not put it out in view to reassure the kid that he could go back to pressing buttons in endless rewinds and fast forwards and 3 second snippets of “play.”

No, I (it – you know, the I-don’t-care-giver) hid the VCR downstairs and told the kid, “Soon a man will bring a new VCR. But you have to stop pushing buttons. You will break it.”

Then the I-don’t-care-giver called the case manager and staff at the kid’s day program, to start a conversation about how to suppress the button pushing. And I (it) won’t give the kid a VCR until that strategy is in place.

It’s going to be difficult. The kid gets up to watch movies while the I-don’t-care-giver and his consort are sound asleep. We can’t be on him 24/7 like real, loving, accomplished, perfect and effective care givers.

But this is a skill he needs to have before he moves into residential placement, which could happen very soon. His housemates will not appreciate him pushing buttons, either on their contraptions or their personalities.

The I-don’t-care-giver. It’s here to help people. It just wants a better world for us all.

Bwah hah hah hah.

What becomes of the broken something somethings?

Joey broke another VCR.

No matter how many times we redirect him away from pushing buttons for constant rewinds and fast forwards, he goes back to the behavior.

He was up at like 3 or 4 this morning poking away, and we didn’t have the gas in our tank to go and challenge him. It was all we could do to roll over and keep the light from his room out of our eyes.

He can’t do DVD. He doesn’t like to use fine motor skills, which is why he can’t write consistently. Plus he scratches and trashes those thin discs as soon as they’re out of the package.

Nope, it’s VCR for him. Chunky and easy to handle without much digital dexterity.

Melissa and I are bummed for him. He’s having trouble falling asleep without a movie on. But I’m not running out to track down yet another of these AV dinosaurs or even a tinkerer to fix this one. I’ve really had it with this behavior from which he refuses to learn.

This is going to be a hard change in his life, and what’s hard on him is inevitably hard on us.

Another reason that sometimes, care giving stinks.

For your listening pleasure:

Dementia Talk

If marvel at the many crossover issues between autism and dementia care giving. Communication is, in both cases, difficult and frustrating for both parties. But there are ways to build a bridge. Good article with some ideas here.

Joyous Paradox: Elders, Care, Love

Editor’s note: What’s the most popular post on Joyous Paradox, my elder-care blog? How to Say Hello to Someone with Alzheimer’s Diseaseranks way at the top. As a professional caregiver, I’ve had the privilege of working with many folks with dementia over the years. I learn more about the nuances of human communication with every encounter. In the coming months, I’ll be sharing tips for strengthening our bonds with those affected by memory disorders. Let’s begin the conversation with a superb overview of dementia communication strategies from England’s National Health Service. — MAB

Communicating with people with dementia

Grandmother and Grandchild by Lovis Corinth, German, 1919 Grandmother and Grandchild by Lovis Corinth, German, 1919, via Wikimedia Commons.

Dementia is a progressive illness that, over time, will affect a person’s ability to remember and understand basic everyday facts, such as names, dates and places.

Dementia will gradually affect the way a person communicates. Their ability to present rational ideas and to reason…

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NEW: Learn Autistic with Rosetta Stone?

You’ve seen the commercial, right? If you’re a caregiver, you’re probably sitting in a stupor when the infomercials come on in the wee hours.

Rosetta Stone is a something something that promises to help you learn another language.

I’m thinking that we might monetize (anybody else sick of that word?) our care giving by teaching lessons in one of our nation’s most significant second languages, Autistic. Wouldn’t you like to converse about wine pairings with the person having the violent melt down at the supermarket? Have you ever wanted to ask an IT question of the kid sitting there pushing the same button over and over at Best Buy? Our new Rosetta Stone: Autistic is perfect for you.

Here’s a sample:

Bye Mom. (bi mahm) “I want to be alone.”

Bye MOM! (bi MAHM) “Seriously, you’ve overstayed your welcome.”

Bye MOM?!?!?!?! (bi MAHHHHHM) “You’ve violated protocol and will be terminated.”

Isn’t that fun? You’re not just memorizing words, you’re learning an entire culture.

And how to avoid being killed by it.

If you can’t sleep, stay up and enjoy this video to encourage your studies.