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It Really Is a Catch 22

  • Posted on August 16, 2011 at 8:55 pm

It would seem that our Provincial Government has opted to NOT authorize Mom’ for some medication, to help combat her groin infection.  To be honest, it is a rather confusing system, our Pharmacare.

I can understand the need to try the cheaper variety first. I mean hell, some of those knockoffs work just fine, but when they don’t, well come on, at least see if the fancy name brand shit will work. I mean that is common sense, right?

NOT according to our Government.

Now there is also this insane bullshit, that certain drugs for diseases aren’t covered. Like Mom’s infection is basically a yeast infection. It impacts her daily quality of life, and yet Pharmacare doesn’t seem to think that medication that helps that, should be covered.

Perhaps our Premier, Christie Clark has never had a yeast infection, that made it difficult for her to walk, to even rest comfortably.  I suppose that her predecessor  Gordon Campbell never had one either. Maybe all that alcohol he imbibed helped him become immune?

I suppose it is a common malady, but come on, the lady needing help here is NINETY FOUR YEARS OLD.  Surely that alone should allow for some consideration, or is it that because she is that old, who gives a fuck?  Personally, I kind of think that is the real reason behind some of these decisions.  Obviously quality of life for the elderly IS NOT a priority for any of our Elected Officials. ( That includes all of the parties, not just our Provincial Liberals. )

You know, I would love to be around when people like Stephen Harper and Christie Clark are in their late eighties, and they need special medications, that aren’t covered by Pharmacare. ( assuming we even have that, then )  And that they are dependent on the Public Health System for it, and have NO outside sources of income to cover those added LUXURY ITEMS.   

Wonder then, if they would regret their decisions made today.

Resentment then Guilt

  • Posted on August 9, 2011 at 2:03 pm

It has been 2 years and 26 days since Mom broke her wrist, and altered our entire lifestyle.  Two years without a break, of having to do depend changes three to four times each day.  Two years plus of doing laundry every day, if not sometimes twice and even three times, just to keep fresh bed pads and towels handy, not to mention nightshirts.

And yeah, it has built up a lot of resentment, that just, well seems wrong. Yet you can’t really stop feeling that way, no matter how hard you try.

Your life is not your own anymore. No more going out for four hours or five, because you can’t leave her alone that long. Oh, she might be okay, but then again, she might not.  Breaking her wrist was when I was there, so naturally the mind conjures up a whole myriad of what could go wrong, without me being there.

Slowly you are worn down, as you go day after day, after day, doing the same routine. You get up, prepare the breakfast, try to grab a cup of coffee before you are needed, though many times you can’t even get that.

You are forced to juggle the time you have, between trying to make a living, to caring for a 94 year old who won’t ask for things, so you become a mind reader, and a spouse who wants to spend time with you, wants to go out and just not worry about rushing home.

And the resentment builds up.

It is wrong, it feels wrong and yet you can’t shut your mind off. The talk from your other half, about when she is gone, gnaws at you. Part of you agrees, joins in even, then the guilt sets in. It isn’t right to think that way, and yet you have to wonder, what is so enjoyable about being 94, being dependent on a 56 year old son to take care of your basic needs? She knows how hard it is, or does she?

See, you wonder about that too, because there are more and more blank stares, that you just can’t penetrate.

There are the sounds, that she isn’t aware she’s making, that make it nearly impossible to concentrate, because they grate on one’s nerves, intrude on whatever concentration you have. You make mistakes, or tasks that should take a few minutes, wind up taking hours, if not days to complete.  All because she makes noises, or sits there with a blank look, a far off stare, that you sense, long before you turn your head to see.

And the resentment builds up

Even simple things like flushing the toilet at night, when she’s gone to sleep is no longer automatic. You don’t flush it after midnight, because she’ll buzz, wondering if something is wrong, as she’s hearing a lot of running water. So now you wake up, to a bathroom filled with the stench of urine, all because she imagines the worse, for something as simple as flushing a toilet.

You run to get videos to watch, yet when you put them on, half the time, if not more, she is staring off into space, not even watching. Other times she’s nodding off, almost as if she is sleeping, and yet she insists that she is watching them. How? Her eyes are shut, but you don’t argue.

That is the last thing you can do, is to argue. Even simply talking is a chore, because half the time she doesn’t hear what you are saying, the other half of the time she isn’t comprehending what you say, or is lost in some other thought. Then you are chastised for talking too loud, yet she stares at you, uncomprehending what you were saying. You can’t win, but you can’t say anything either. There is no outlet, no release valve to open, because no one wants to hear your whines, your complaints. 

And the resentment builds up

At night you are exhausted, but rarely sleep more than a few hours without waking, questioning yourself, all because you feel this horrible sense of guilt. You had bad thoughts, you felt anger towards her for interrupting you, for needing you but not.  You are torn, between the love of her, and the love for your spouse, like you are the big flag tied around a piece of rope, with one of them on either side, pulling, and pulling.

You aren’t stupid, you know that stress is a killer, but you worry and gnaw at all that goes on, anyhow. It isn’t easy to ignore, to switch it off, though you try, and try and yes, try more.  Sometimes you get a glimmer of success, but all too often you are too tired to keep on fighting, to keep on holding onto your own sanity.

Your life has stopped being your own. You are bound by her last time here, and deep in your mind you hope it isn’t for much longer. And yet, in that same recess of your mind, you wish it would last for much much longer. You don’t want her to die, but you do. It is an age old conflict.

Is she happy? By looking at her face, at how she looks from how you remember her, you doubt if she is, and then suddenly she will smile, laugh at something inconsequential, and there is the old her.  You sit and watch, as she sits there reading a book, knowing it is the same page she’s been reading for hours, and yet, she does manage to flip through, to muddle on.

Your anger, your annoyance, flares for a second, as the whimpering intrudes, then dies down as the guilt races forward, replacing the anger, the resentment. It is a minute by minute fluctuation of emotions, all carrying on long past when you close your own eyes. You know that tomorrow will be the same, as will the day after, and the one after that.  It is a routine, and still, you dream that maybe today it will be different.

The resentment builds, but the guilt quickly overcomes that. You wonder how you will feel, when the routine is no more, when she has left you, alone with all those memories. Will the good ones be enough to suppress the bad ones? Will the memories be of how she shakes while you try to change the depends, or will they be of the time you went for a picnic in the park, or went with her canvassing for a charity?

What will your thoughts be, as you recall the feelings you have now, the turmoil of the routine, of the burden of being the primary caregiver?

And even as you ponder that, you wonder too, how much longer can you hold out? 

and the guilt is always there, always ready to lay its trip on your tired mind, on your weary soul.

But what else can you do, but keep trudging on.

The Roller Coaster of Emotions, from Panic to Trepidation

  • Posted on July 31, 2011 at 11:09 am

This is not a job for everyone, that is frigging obvious to me, as things spiral downwards. From lost focus, to shaking, to toes turning black and blue.  The ride is up one minute, then heading downwards at the flick of a switch, and it plays hell on one’s system, never mind the mind.

All sorts of things run through the mind, and fear is never far away, from bubbling to the surface, and overtaking a person.

Yesterday, I noticed one of Mom’s toes a darker color than normal. It wasn’t pink but more light blue, with a bit of swelling further up the toe ( away from the nail ).  Now this is on her good foot, the one that had a sort of yeast infection a few weeks ( or more ) back.

Last night it was a darker color, and so this morning I had the home worker take a look. 

SIDE NOTE HERE:  This is one more reason why it is important for the home support workers to not just be properly trained, but to know their patient. What good is it to ask someone who hasn’t seen or been involved with mom regularly to check the toe out?  Like how would they know if it was different in size, or swelling, if they hadn’t been familiar with Mom?   In addition, they wouldn’t have a rapport, to be able to find out that Mom said she bumped her big toe the other day.  Details that matter, but something a casual worker isn’t going to find out, or consider.

This morning, it appears that there is a break in her skin, just above the nail, and that the part further up is swollen, not as dark as that by her nail.  So obviously something is amiss, and there goes the mind racing forward imagining all sorts of complications.  Considering Mom originally had black toes, that need amputation on her other foot, that is the first thing that pops into one’s head. Is this another instance of that?

IF it is, well you know the end is coming, as there is no way Mom could go through another five or so hours of surgery, and amputation, to save her leg, or life. She can no longer tolerate the anesthetics, which makes her a poor candidate for surgery. In addition, there is the breathing, lungs, and the other medical issues. Add into that, that she has an infection that won’t go away, but is contained, and well…  you get the picture.

SO the mind goes into overdrive, because the day you dread, maybe around the corner. You are never truly prepared for it, and at the same time, you want to forestall it. You are consumed suddenly by morbid thoughts, and begin wondering, how will you cope, how will you deal with all that could happen, and happen quickly.

I didn’t want the job, never really raised my hand and said, hey I’ll do it, because honestly, it just sort of fell into my lap. I am her Son, what else could I do, but do what needs to be done. The stress is something I just can’t describe, and I am pretty good with words. The emptiness, the anger, one feels from having to do the same task, day in and day out, not for weeks, not for months, but going on to over several years now. It zaps you, consumes your every waking moment, and to be honest, it plays hell with one’s relationships.

Not just family, but friends too. You become a bore, always under the gun to not enjoy things, to do things. Your time is no longer your own, but is limited. Even going out to shop for groceries, becomes a race with the clock. Your whole thinking process is now centered on what is happening at home, when you aren’t there. Is she in need of a change, is she trying to go to the bathroom on her own, is she having a coughing fit, and the list just goes on.

You think, eat, breathe, nothing but what is the next crisis to be, and you resent it too. Your life is not yours anymore, it isn’t centered around your spouse, or your friends. It is all about an old person, who often isn’t even aware of the demands being placed on you.

A home support worker is here for an hour, and off they go to the next patient. At the end of the day, whether 8 or 10 or even 12 hours, the day is over. They can go out, as they get days off, and they can socialize, have friends and do things, that you used to do. In some ways you become jealous, because you are tied down, for 24 hours a day, seven days a week. Only death will release you from the job at hand, that is filled with constant stress.

And yet, it is your parent, your loved one.  How do you walk away from that?   I suppose some could, hell some do, but the guilt after, would be too much. Sure I think of it, dream about it perhaps, and the thoughts that come to mind, are, well, distasteful and wrong.  Yet it is life, it is how it goes.

After all, she spent years changing my diapers, years in teaching me values and ethics, that are my foundation today. How can one just walk away?   You can’t, so the rollercoaster ride continues, until that one day comes, when the downward spiral, simply ends, with no upward turn.  Life ends, and you wonder, does it end just for her, or does it end for you too?

Pain it may be, but she needs to walk more

  • Posted on June 13, 2011 at 9:06 am

This latest foot sore, has basically had Mom tied to a wheeler, rather than her walking. Since about Tuesday afternoon, she’s been complaining about the pain in her foot, so we’ve used the Wheeler, rather than the walker. Now, it seems to be from some form of infection, and the way her small toe has curled under the other toe. Could also be Arthritis setting in, which she has a lot of.

The downside to keeping her comfortable, to avoid the pain, is that now her ability to get on the toilet, is becoming far more difficult. She is forgetting, or unable to focus enough, to get herself into position, to sit down on the toilet, or even on the couch.

My natural instinct is to spare her the pain, but I think that is perhaps increasing her decline. Maybe, it is better to be a bit more resistant to that temptation, and allow her to have some pain, so as to not lose her mobility. I mean, I don’t want her to suffer, but without her mobility, she will decline far more rapidly. It won’t help her other functions, like memory, like co-ordination.  It is hard enough on her, having to be changed and such.

Question is, can I be that way?

I am a softy, but it is a matter of doing what is best. More walking can keep her muscles moving, can help in her bowel movements, and maybe even her urinary output. In short, letting her have some pain, might actually prevent , or lessen, worse complications.

This really isn’t easy.

Tough Call To Make, Thanks BCS

  • Posted on June 8, 2011 at 4:02 pm
This entry is part 23 of 24 in the series Quality of Life

Background : Mom has gotten an infection in her toe, that is just as resilient as the one in her groin, or so it seems. It has also spread from just the baby toe, to basically her foot. It has become painful for her to walk, so we are using a transport chair ( scaled down version of a wheelchair ). Even just sitting, her foot can throb at times, and well, it doesn’t help her tremors, or her focus.

The Situation : Our regular home support worker, was off last weekend, and this weekend, because of holidays. Hey, they are entitled to have one, so we had substitutes last weekend. Colleen and Amy, who we’ve had before. Both are okay, not great, not one’s I would have as regulars. We have them again this weekend.

Now, Colleen, well she did okay on Saturday. Needed a bit of direction, but managed and Mom wasn’t too stressed out afterwards.  Unfortunately I can’t say the same for Amy on Sunday. I’ve just finally managed to contain the groin infection again, and this afternoon, the foot looks a bit better.

The Issue : I have to decide now, if I will cancel Sunday with Beacon Community Services, or allow Amy to return, and perhaps add to Mom’s pain & stress.

I did call them today, to see about a replacement, but gee, there just isn’t anyone available. Sunday being their worst day as no one wants to work on Sunday, so it seems.

Yeah, I was born on a turnip truck yesterday.

Honestly, they don’t have any workers to fill in on Sunday? So let me see, one of the workers phones in sick, or books off, and hey, the patient just suffers, ‘cuz they don’t have anyone to fill in?  Not bloody likely.

Now Amy is okay, if things are okay. Doesn’t have a clue on how to use a wheeler, and frankly, not too sure if she can handle someone Mom’s weight ( 125 lbs ) and frailty.  Perhaps she does fine when no one is nearby, but I had to help her get Mom into the bathroom, then get her on the bench to be washed.

Had to also change her night shirt too, as well, we changed that first, then sat her down on a wet bench.  Brilliant, let’s add to the laundry, ‘cuz really I don’t have enough to make up a third load. ( Mom’s incontinence is pretty bad some days, worse when she is stressed out, Sunday being one of those days )

Not only did I have to show her how to get Mom into the bathroom, SAFELY, but had to help in getting Mom onto the bench. And that too, wasn’t ideal, because she really didn’t have a clue on how to insure Mom was properly seated on the bench. She was half on, half off, and that isn’t comfortable.

The washing was pretty half assed too. But then, given how she worked, it didn’t surprise me much. The lack of a proper washing in the groin, and drying, added to the discomfort, and caused the infection to flare up again. ( I did have it under control, until the combination of Saturday & Sunday )

My Dilema : So the question I have to answer now, is do I cancel Sunday with Amy, and wind up doing it myself, which isn’t ideal. I can do it, but it is rather embarassing for Mom, and you know, at 94 she is entitled to some dignity.

If I don’t cancel, I’ll spend the better part of next week, getting both infections back under control, and dealing with Mom’s nervousness.  Hell, I don’t even know if I can get the foot infection back under control now, never mind next week. ( In fairness, the infection is one of those, that won’t go away, and this weeks flare up is not all the fault of Sunday’s piss poor bathing. )

The reason why no one else can come in place of Amy, is IN MY MIND, that the scheduler simply didn’t want to do it, It would mean having to do some juggling perhaps, but the real underlying reason is that Beacon Community services has no proper plan in place, to include Substitutes.

After all, having properly trained personnel isn’t a priority now, so why have substitutes on stand by?

IT IS ABOUT THE PROFITS – GOTTA PAY $250,000.00 SALARIES TO THE CEO

How Quickly Things Can Change

  • Posted on June 2, 2011 at 8:33 am
This entry is part 22 of 24 in the series Quality of Life

Another example of why it is important to have regular workers.  They know the average, they can spot the subtle changes, such as just how wet she is, in the morning, or how much better a toe looks, or doesn’t look.

Like last night, everything was fine, but not this morning.

Mom is fighting a toe fungal infection, and it looked like we had finally under control, until this morning. Suddenly there is swelling around the little toe, and the redness is back.  It is also very painful, which means the wheeler, instead of the walker.

Saturday & Sunday are scheduled substitutes.  Oh this is not going to be fun, because the two scheduled, are okay, but not for when she is in pain. Specially the one scheduled for Sunday. Problem is, Beacon simply does NOT have enough qualified workers, to substitute.

AND NOW Mom, a lady of 94, will suffer because of it.  This is the NEW ORDER, established by the Conservatives. Oh you can call the Provincial Government Liberals, call them Socialists even, but it doesn’t alter the fact that they are nothing more than an imitation of the Harper Alliance Party.

Yes we do need to watch the money, but we need to get VALUE for the money we spend. BCS needs to update it’s employees, so that qualified workers are hired, not just cheap fill ins. The Government needs to MONITOR these employees, and NOT RELY ON BEACON to run a tight and effecient and competent ship.

Call them a Charity if you want, but the bottom line for them, and for VIHA, is PROFITS.

AND IT IS THE OLD AND INFIRMED THAT PAY THE PRICE FOR THAT, AT THE EXPENSE OF THEIR HEALTH, OF THEIR QUALITY OF LIFE.

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