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Having One Hour Is A Big Deal

  • Posted on September 9, 2010 at 11:06 am

You truly have to walk a mile in a person’s shoes, to fully understand the complexity of being a full time caregiver.  Especially if that person, (that you are caring for) is a parent. The roles become reversed, to a degree, but unlike being a parent, you have to balance things with keeping their feelings in mind.

They are used to the one’s making the decisions, not they depend on you. It can be both embarrassing, as well as humiliating.

In so many ways, being a 24/7 caregiver puts you at a disadvantage. Unlike “normal” family interaction, you can’t really afford to have battles, or disagreements.  In short, you really don’t get to vent your anger, your frustrations.  Least not with your parent, as you did when you were in the ‘child’ role.

And that only increases your stress levels, not to mention can create health issues for you.

It is why that ONE HOUR a day, that the so called ‘home support workers’ are in your home, becomes your refuge, your time to simply be free of the stress, the worry.   So when that ONE HOUR becomes a nightmare, becomes no longer a sanctuary, your burnout rate grows. So too, does your level of stress, and your inability to have a calm moment to yourself.

To many it isn’t a big deal, like what is ONE HOUR? 

Well, it is the only time you get to wipe your mind of your obligations. It is the time you can sip a cup of coffee, without having to be interrupted to go do a diaper change, or nightshirt change. A chance to simply not have to deal with the smells of incontinence. 

ONE HOUR is when you can concentrate on yourself, on your own life, without interruption. OR SO THE THEORY GOES!

It is like being inside the eye of a hurricane. ITtruly is a moment when the winds aren’t swirling around you, when you do not have to deal with the daily grind of care-giving. So when a company like Beacon Community Services sends you incompetent workers, or alter the schedule (without cause) it has a huge impact.

As the situation grows worse, that single ONE HOUR becomes your refuge, your hold onto sanity.  When it is taken from you, or when it is never certain that it will be there for you, you suffer, and so does the one you are caring for.

IF ONLY SOMEONE COULD EXPLAIN THAT TO NOT JUST BEACON COMMUNITY SERVICES, BUT TO VIHA, AND TO MANY OF THOSE HOME SUPPORT WORKERS.

No ID

  • Posted on August 13, 2010 at 4:14 pm
This entry is part 3 of 7 in the series Vacation Hell

I don’t get it, you are going to someone’s home for the first time, or after a long long time past, and you don’t think to have your ID badge showing?  Like how in the hell is anyone supposed to know you are, who you say you are?

Three substitutes so far, this week.  Out of the three, none displayed their badges [ID] until asked, and all three had to hunt for it.  Today’s didn’t even know where it was, let alone able to produce it.

Such is life with the so called experienced workers sent by  Beacon Community Services.

And for the record, this mornings worker needs a refresher course on how to clean the groin area.  I HAD TO DO IT A FEW HOURS LATER AS THE LACK OF CLEANING, AGGRAVATED THE GROIN INFECTION, CAUSING A 93 YEAR OLD TO BE IN AGONY.

Weekend Aftermath

  • Posted on August 3, 2010 at 11:35 am

Tuesday and it feels like it should be Friday or something.   The aftermath of having to go through the weekend of wondering who will show up, wondering who will turn up Monday, takes a heavy toll.

Sleep » At best a few hours at a time, before the nightmares wake one up. The constant thinking of how to cope IF a change occurs, makes one restless, never truly have a good refreshing deep sleep.

Morning Routine »  The first hour of waking up should be a time to collect yourself, to have that first cup of coffee and just gradually come awake. Unfortunately, the more the schedule changes, the instant you come awake, your mind starts the guessing game, as to who will be on the schedule, and even if it is the regular, will it be them who arrives at 9am?

With a Four Day a Week regular off on vacation beginning next week, the fear is setting in. This is a problem that should be easily dealt with, but due to the inability of Beacon Communit Services to adequately provide COMPETENT & TRAINED HOME SUPPORT WORKERS, one now begins the planning for diseaster.

There has to be one, because one cannot trust in the workers being sent. Even before they arrive, the mental process of worrying, is in full force.  Not just for me, but for Mother, who can’t get it out of her mind.

VIHA is supposed to be the backstop, the insurance that those coming into our homes are properly trained, are fully informed of the task assigned to them, and are competent.  Unfortunately VIHA is not about protecting us, the people, but instead is about insuring business makes a healthy profit.

In all honesty, it almost feels like VIHA is not even interested in our needs, our situations, but instead of protecting the vested interests of the Companies they have hired. It is like people come a very distant LAST.

The aftermath of all this bullshit, is that primary caregivers are quickly being burnt out. I feel it, daily, and it is only getting worse.

Three Egos

  • Posted on July 11, 2010 at 9:20 am

I suppose it should be four egos, the dog sure as heck has one to match those of Mom, David, & myself.  Seems it is a constant clash these days, and you know the juggling is becoming harder & harder.

I don’t know whose ego to massage anymore, sure as hell isn’t mine. It is always a toss up, between trying to calm Mom down, or David.  Both of them seem to be wanting more & more attention, as if the two of them are in some form of competition. Then there is the dog too, who seems to feed on that, demanding her own little piece of me.

There is only so much to go around, and I am feeling stretched beyond the breaking point. Most days Mom will sit and stare at me, then when I ask what she wants, she says nothing. Half hour later it is to go get changed, when the urine is worse, the nightshirt is soaked, and more laundry needs doing.

Then there is David who comes home in a mood, who keeps harping on how he needs hope of a future, without Mom.  He simply doesn’t understand how much that hurts, how it makes me feel like ripping his head off. Yet, I understand where it comes from, as really it is depressing.

Every dime goes to maintaining a safe home, one that is clean & has what is needed, which isn’t easy to do, without limited resources.  To make choices like between hamburger and depends, is a no brainer, it is the depends.

The need to constantly buy supplies like depends, sterile gloves, creams, and keep a reserve for medications, for other stuff that she needs, is hard to take. But what is really hard is that David isn’t the comfort I expect from him.  There is no one to share my own feelings with, my own moods, because they both look to me to solve their fears, their moods.

From Mom with her hearing strange noises, to David wondering what the future will be like without Mom.  It is becoming too much, yet what choices are there? No way I can walk away, though at times I wish I could. 

This is the hardest part of caring. Too many battle fronts to deal with, yet we have to. There isn’t much out there, to make life any easier.  So it is onwards, until either the end comes, or we just simply burn out and fall by the wayside.

Lights in the Window

  • Posted on June 28, 2010 at 9:01 am

Another of those nights, where she claims to have seen someone in the backyard, flashing a light up into the window. Her imagination is getting good, but truth is, no one was in the backyard.  At worse it was the idiot behind us, driving into his driveway and the headlights played across the window.

Still it gnaws at her, makes her think someone is there. Told her she should call me, but her answer is that you never know who these people are, and it could be dangerous. Like I’d confront them? Nope, I’d call the cops, and yet she won’t buzz me.

It is hard to come up with the right response, especially first thing in the morning, when you haven’t had your coffee yet. But then, that is part of caregiving, being on your toes at an instant’s notice, to handle a situation.

You have to reassure her, to keep her calm or it’ll fester all day and worse, into the night and next day.  This isn’t easy and I am running out of answers.

When Money is Tight

  • Posted on June 25, 2010 at 11:08 am

There are times when I wonder, if I am just spinning my wheels, or merely going crazy. I mean, I want to do my best, and yet it seems like Mom isn’t willing to work with what we got. I mean we aren’t rich, I have to work from home, eke out a living from the Internet, when I can.

Problem is, I can’t just sit down to write code for my pages, or even write posts for my various blog projects. I am on call, and have to be able to drop things at an instant. Hard to keep one’s concentration when you are at someone elses beck and call.

David works hard, and our combined income is not at the poverty level, but it sure as hell isn’t much above it. I wonder how they come up with that level? I mean, we do okay, have decent food, but the reserves are minimal at best.  And when you care for a 93 year old, you need reserves.

Like Pharmacare doesn’t cover anti fungal creams, so there goes about $35 every couple of weeks.  Then there is the depends, that’s turning into about $50 a week, plus the need for gloves to do the changes, another $20 a month. Add everything up and it comes to a sizeable hunk of change.   Yet Mom doesn’t seem to get it anymore.

For example, today she is wanting me to get her some blouses and a couple of summer dresses.  Reasonable you may think, except the fact is, she wears a nighshirt and housecoat all the time. Her ability to go out is limited, due to her walking and strength.

Factor in too that she requires regular changes, due to incontentcy, and well, let me see, wearing a dress, slip, etc, is only going to make that task harder, not to mention increasing my laundry load.  Course a solution to the laundry is to do more changes, except that isn’t as easy as it sounds.

I mean she doesn’t know WHEN she’s gone, so how am I supposed to know?  Then too, more changes means more effort for her to get up, go to the bedroom, then back again. She’s already exhausted before she’s even out of the bedroom for the morning, so this is gonna make it less?

Increased changes also mean more depends, which at about a $1 per depend, will become even more expensive. As it is, it is about $5 per day now.

I do a full load of laundry now, which meant I had to buy more nightshirts, just to be able to keep clean one’s available. As it seems that for every depend change, a new nighshirt is needed 2 out 3 changes.  With dresses, slips, skirts & blouses, this could evolve into 2 or even 3 loads, and the washing machine is not new.  Any reserves to buy a new one is out the window now, never mind having to cough up money for dresses that she won’t wear but once or twice.

Yet how do I tell her? When I do mention cost, it becomes even worse. Oh, not the demands for things, but instead she’ll say she doesn’t need a change, trying to cut down on that, or says she doesn’t need to eat much, to cut back the portions. That is crazy, but its what she does, so telling her I can’t get dresses, can’t get blouses, becomes difficult if not impossible to do.

Being up front about the expenses, is not an option. She gets the notion, thanks to Beacon, that she is a burden, and that only robs her of the ability to fight through the difficult moments.

This balancing act is tough because then too, I have David to worry about. He sees the stress, resents it too, and you can’t blame him. He loves me, so naturally he’s protective, and yet he doesn’t get the bond that exists between me and mom. Hell, at times, even I don’t quite get it. I feel resentment too, but try to contain it, to not show it, but at times, it is hard.

All I know is that I have to keep going forward, that looking back, that moaning of what I can’t do is not going to get things done. Instead, I need to vent, move on. It just isn’t easy to do.

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