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It is just too much some days

  • Posted on February 8, 2012 at 10:45 am
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Honestly, I think that the worse part of being the primary care giver for a parent, is the depression it causes.

Sure you can arrange for respite care, but that is for those who can turn their minds off, and hope that those looking after your loved one is competent.  I can’t do that, I guess because I am a worrier, but also because I have seen how Beacon Community Services works.  They simply do not have enough qualified personnel, to do the job.

So it means I stand guard every day, without any real break.

Sure, I get one between 9am and 10am when the worker is here, providing it is the regular worker. Another between 3pm and 4pm but again, providing it is the regular worker.  But that is a brief interlude in the day’s routine, it doesn’t give enough time to decompress, to unwind.  And if it isn’t a regular worker, well even that brief interlude is gone.

Like today will be.

Mom is tired, couldn’t get out of bed and so we had to do a bed bath, but even that was exhausting.  In some ways, more so than if she had gotten out of bed.  This afternoon, a NEW worker is suddenly scheduled to show up.  Thankfully I checked the schedule, but had I not checked, it would have been a surprise come 3pm.

I am tired, worn out from coping, and I question GOD, as to just how much can one be forced to endure before they break.

I am angry, and worn out, but it comes from being under attack now, for over two long years. It is hard to watch the person you love slowly die. Because that is what is happening. She may rally, may live on in discomfort & pain for some time to come, but you are there, seeing it every day, every hour of each day.  It tears at you, because honestly, you can’t do a damn thing about it.

No matter how much you push to make things easier, in the end it won’t matter.  It won’t stop or hold back Death.  He will come, so you sit back, wonder how you can keep going, when nothing you can do, will alter reality.  You are fighting a battle you will never win, and yet, you can’t give in, you can’t surrender and just let it happen.

You look around, and see nothing but despair, but pain.  It isn’t the lack of help, or even the lack of money, that tears at you, but the inability to make it easier for her, that eats away at you, every second of every hour of every day.  It is hopeless, and yet, you know you can’t stop trying.

There is no moment to just ignore what is happening, you are dealing  with it every waking moment, and every sleeping one. You toss, turn at night, wake up because you heard a noise, wait until you are certain it isn’t her. You close your eyes and see blackness, endless night, but when you open your eyes, nothing has changed. It is still the same fight, the same struggle to try and make a difference. Hopefully this morning, you won’t be in crisis mode, or dealing with a new assault from some unseen quarter.

You sit in silence, listening, and yet feeling like tomorrow will be like today, and maybe that will be okay, because at least you are holding it together for now. You worry, if you can manage when something else pops up to strike, and then you worry, how will you manage afterwards.

Depression isn’t just a state of mind, but one that hits your physical being as well. You try to push through it, but like everything else, it just seems all so pointless.  It just doesn’t seem to matter what you do, because in the end, you just can’t win. Hope flickers, but grows dimmer with each passing day, with each new assault.

It is a life you don’t wish on your worst enemy, and yet, if you had to do it all over again, knowing what you know, how can you not but do it?

She is Mom, there is no other option, no other choice.  You do it, because she is Mom.

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The Lonely Vigil

  • Posted on June 23, 2011 at 12:24 pm
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I suppose those who have siblings, that help share in the caregiving, have a bit of an edge, versus the only child, who is suddenly thrust into the role of sole primary caregiver.  It is a lonely vigil that I think many don’t quite understand, or realize.

To begin with, it’s a depressing job.

Honestly, you are merely attempting to fill a gap between what time is left, and death. It kind of frustrates a person, because, well the best you can hope for, is that you’ve made it less painful, more bearable. And it also means, you are guaranteed to fail, because Death always win.

Then there is the emptiness inside.

When you have others, like a brother or sister, you have someone to share the day with, the chores with. You aren’t doing it 24/7 and you have an outlet to vent, to let it out. So too, do they, which eases the stress, but when there is no one, it becomes an almost insurmountable burden, that you know will only end, when a life is gone.

It feeds on itself, because that just adds to the depression.

You can’t really share how you feel with friends, or even a spouse, as it depresses them, turns them off. Then you feel guilty, for dumping on them, and then you feel resentment too. And there goes the whole cycle again, adding to the depression.

To those who choose this profession, as a job, I marvel at them. It has to be a strain, though for some, I hazard they look at it as just that, a job. Maybe that is a defense mechanism, I don’t know. All I know is that caregiving is a damn lonely calling, a frustrating and very depressing one.  Still, it is life, and well, what else can you do?

It’s life, isn’t it?

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Trapped in an endless dark hole

  • Posted on March 7, 2011 at 9:21 am
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There are moments, when you just feel like you are trapped in a dark hole, that has no ending. It is like you wake up, have to be ready to deal with either Beacon calling to tell you a substitute is coming, or you need to check the schedule to see in case they aren’t calling.

You have breakfast to get ready, so that when she is finished with the worker, it is there for her

Your mind has to wake up quickly too, because when you get up, you may need to do a complete change, including the bed. You may have to clean up poop, which means a sponge bath even though a worker is coming in an hour. 

You just can’t leave her in feces, not with her skin condition, not with the groin infection. At least I can’t.

You spend the day listening for any signs of difficulties, while attending to laundry, lunch, figuring out dinner. You have to keep an eye on the medication, to make sure you have enough, or need to order refills.

Specially the creams. Those are not consistent in use, so you can’t afford to be out. As there are two tubes, one half the size of the other, its a balancing act to keep both in hand.

Then there is the worry over the bills, over the wife. You can’t afford to fall behind, even if your money is limited. Hydro is running at $300 a month, simply due to daily hot water laundry. There is no choice to that. Cable which includes the phone, is $130 a month, and on top of that, you have the other incidentals.

Things like keeping depends in stock, rubber gloves so you don’t spread any infections, or get them yourself. Depends are a daily used item, but can vary in how many you need. Again, something you have to be prepared for at any time, is a depend change.

Changes can run anywhere now, from a speedy 15 minutes to a good 40 minutes. It all depends on how quickly you spot the need for a change, because she won’t tell you on her own. You either have to smell the need, or ask.

One has to monitor her breathing. There are times when just flipping the page of the newspaper, brings on a bout of heavy breathing. So you have to watch that, and of course, the choking spells.  Just swallowing can sometimes lead to ten minutes of coughing.

There is the endless paper to be picked up. She has a tissue fetish these days, and you need to insure her paths are always clear of obstacles.

Through all this, you need to figure out how to afford the medications, and the other stuff, while also seeing about getting a foot doctor to trim the toenails, a hairdresser to come in and cut the hair.

You become swamped by the cost, wondering how you can survive, because you have no time to do your own work. If you get it, it is never constant, always interrupted, or always about to be. Your concentration is divided, because there is no choice.

And that is just the day. Night has its own issues, so that you get up at 7:30 am and head down at 10:30 pm where you get perhaps an hour to unwind, before heading off to a disjointed sleep. And before you know it, you are once more in the endless loop of your life.

This is my life.  This is caregiving for someone 93, and it feels like an endless trap. You know that it will end, only when she dies. It gnaws at your insides, it wears out your mind, but you can’t show it, because she can pick up on it. The dog picks up on it, the wife picks up on it, and that doesn’t make for a happy home.

It becomes a well filled with nothing but darkness, nothing but depression. It is life, that you wonder, if it is worth it. Thoughts you’d never think of having, are your constant companion, as you go through the motions, struggling to find a reason for it all. You question everything, and then, when the shit literally hits the fan, you have to cope, with your batteries at a low level.

It is amazing you can get up in the morning. Sleeping in is a rarity, because nothing seems to go as planned, or as hoped for.

The hole is huge, dark and filled with dread & despair. It is endless, and you are trapped, because there is no way out. Not if you love the one you are caring for.

This is Caregiving.

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Now I Don’t Talk Enough

  • Posted on December 2, 2009 at 3:16 pm
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over-cliffEver had those days, when nothing you do seems to please, or is enough?

I think this is one of them, in a growing long line of them, which makes me question, if I can survive this? I wonder too, how it impacts David, and yet I can’t dwell on that, or on how I feel so exhausted, an hour or less, after waking up. It is almost like a conspiracy, to deny a moment’s peace, and yet, I still believe, that it is the right thing.

Like today’s worker, Yvette. Nice lady, competent too, or so I thought, but frankly the last couple of visits, leaves me wondering. And it has an impact on Mom too. I mean how can you put depends on a person, and leave them at half mast?  Then you spend extra time, discussing how shoddy things are in the world, I mean it is becoming very confusing.

I think too, the lack of communication with others, is taking its toll. Not just on me, but on Mom. Now she says I don’t talk enough, yet each time I ask her if she is okay, if she wants something, or get up and get myself a drink, she doesn’t even look up from her book, at times. Yet I am not talking enough.

There is no book on this stuff, least not one that isn’t clinical, and speaks from the heart. I mean, this isn’t easy when you have a deep emotional connection, with the other. And let’s face it, she is dying. I hate to think that, but it is reality, simply because of her age. I mean she doesn’t have 20 or 30 years ahead of her. That is reality, but where is it written on how to cope with it?

Yes, it makes me angry, scared too, but there is no one to discuss it with, to talk it over with, who isn’t going to respond with the age old reply: “well the older they get…” which infuriates me. I know things break down, but all a guy wants, is someone to understand, not pass judgement, not render sage words of wisdom from on high. I can read the bible for that, but yet, I don’t know.

This is not easy, that is about the only constant I can see here, that it isn’t easy, nor will it get easier, or better. Things will get worse, and that scares me.

Continue reading Now I Don’t Talk Enough »

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