Trying to Understand
This whole caregiving job has no guidelines, no books that explain what you will go through, or how to adapt to the changes, to the frustrations. There is no magic course to take, that will teach you how to be a loving, compassionate, caregiver.
Either it is in you, or it isn’t.
You can talk and discuss all about how to lift a person, how to wash them and even how to speak to them, but there is no way you can teach compassion, caring. Even as a family member, a son, I find it hard to not get angry, to not feel put upon, at the simplest of requests. And it impacts my own self confidence, self evaluation.
Am I a bad son, for being impatient with the routine?
Like when I take her to go lay down in the afternoon, and she stands there, with that blank look, it makes me cringe.
Or walking behind her, and the odor from her makes me feel, well, sick to my stomach. I know she can’t help it, but has she lost that much control over her bodily functions, that she can’t even control her flatulence?
Like why does it happen, just as I am bending down to pull up the depends? Is it deliberate, or co-incidence?
It is those thoughts, that make me question myself, that make me wonder, what am I doing wrong? Are those feelings natural, is the impatience of following behind, as she shuffles, unless she’s gotta go the bathroom, when it is almost like running a short distance sprint, normal?
You sit awake at night, wondering if somehow, you are deliberately making yourself angry, so that when the ‘eventuality of death’ does arrive, you will have closed your emotions off? Is it a defence mechanism, to try and mitigate the upcoming emotional upheaval, or is it selfishness?
It is the frustration, daily or hourly at times, when she drinks, and gulps the juice, making herself choke. Thoughts that she does it on purpose, to get attention race through the head, while worry gnaws at me, wondering what to do, if she doesn’t catch her breath.
In short, it is a vicious cycle, that draws energy, strength from a guy, and really, it is no wonder that by the end of the day, I am feeling short tempered, irritable, & just downright snarky. It is a long day, from 6am till midnight, and no wonder the blood pressure is up and down like a yo yo.
It does make me question myself, and when David says things will be different, I am pissed at him, because I know he is meaning ‘when she is dead’ and I don’t want that. Or do I? Is that why I am so stressed, so nervous? Am I that bad, for even thinking it could be that?
Bottom line is this, the job of caring for an older parent is a lonely task, that tests your true mettle. It isn’t filled with accolades, or even compassion from those you expect to provide that for you, it is a job that beats you up, wears you down.
This is my life, it sucks, but it is the only one I got.
It’ll Only Get Worse
The daily grind is something, and yet compared to many it isn’t all that bad. Seriously, I know that what I have to accomplish, each day with Mom, isn’t all that complicated, all that difficult even. And yet, it weighs on the mind, on the body so that by the end of the day, the patience is gone, the temper is in full throttle, and everything seems ready to fall apart.
Maybe the cause is the stress, real and imagined. I don’t know which is worse, the real stress of being financially challenged, or the imagined stress when a new worker is coming, or new additions to the routine are needed.
It isn’t even Mom herself, that is the cause. I don’t know, it gets complicated, but at times one feels like such a failure, that you just wish it would all end, that someone else would assume the burden, and yes, it is a burden. Still, those are the dark thoughts, and they do seem to come more frequent, than before her wrist being broken. And then there are the thoughts about what is coming next, because there will be a next, a more to follow.
IF I am finding it hard to cope now, with Mom being more or less mobile, more or less coherent, how will I manage her care when her abilities diminish, when her mobility is less, her continence is even less? What will happen if she can’t move, or becomes bed ridden?
Crazy thoughts, that seem to be running in my head, every day, and night now. Like I get a phone call telling me the normal Monday worker has booked off sick, again, and my thoughts go from nice they called, to wondering what I’ll do when the worker drops mom, or lets her fall?
It has to be crazy, to anticipate diseaster, yet that is what seems to go through my mind, on a too regular basis these days. Then too, there is the lack of patience, for when I take her to the bedroom, and she suddenly says she needs to use the toilet. I am impatient, annoyed even, and yet why?
After all, it is better that she still has some control, and I really don’t want to have to change depends that are filled with shit, yet her request annoys me. That isn’t right, and after, it makes me feel like shit. I don’t say anything, but the thoughts, they are wrong to have, yet fill my fucked up head. I don’t get it, and I don’t expect any answers, least of all from here.
Still this whole thing is becoming a living nightmare. I can’t hire anyone, don’t have the money, and no friggin way can I put her in a home. It would kill her, and I can’t do that. I know I love her, I just don’t know how to make her remaining time comfortable, to make it pleasurable.
I don’t know how to change my mind, to alter the feelings anymore. I am not some weak willed wusse, or least, I didn’t use to be, but now, now I wonder. My resolve is weakened, and it is killing me with each passing day. I feel it inside, the withering away, from the worry about what will be, or what could be. It is wrong, stupid, and not helpful, yet it won’t go away.
God how I hate this life.
The Bucket List
We watched the movie called The Bucket List with Morgan Freeman and Jack Nicholson. I am glad I watched it, and also wish I never had. It has me wondering about a lot of things, none of which is exactly restful. I mean it is about two guys who are diagnosed with terminal cancer, given only six months or so to live.
That alone, is unnerving, for me.
Worse is the choices, the question, of what would one do, if they are told that? Now, I know, a lot of people get that news, some will stay in hospital and fight for a few extra days, while others will simply bury their head in the sand, and go about their life as if nothing was wrong. Others, not many, will go and try to live their lives, to the fullest, but what is the right answer?
What would I do, if suddenly I knew my time on earth was limited?
It’s an interesting question, given how it also makes me wonder, about Mom, and her situation. I mean she knows her time is numbered, and yet she sits, day in, day out, reading, and watching the odd show. How does that make her accept the inevitable any easier?
Then too, it reminds of an age old question, asked of a wise Rabbi. Seems he posed that very same question, as in the movie, and the students complained that as they didn’t know they would die tomorrow, how could they plan for it. His answer was to say, exactly so, therefore live each day, as if it was your last.
But how can you do that? Seriously, just how can you live today, as if it was your last day, and if you do, what would you do differently?
Nice sentiment, but today’s world is not so cut and dried, now is it? However, I think he meant his answer in a more spiritual sense, which now has me thinking on that too. See, I hate those kind of movies, that make me think, yet I know I won’t be able to put this to rest. It will lurk in the back of my mind, as I watch mother, wondering if somehow I am stopping her from doing something, or if I too, am just marking time, till the inevitable arrives.
Do I show more affection, do I say the phrases of ‘I love you’ more often now, or do I simply go on, as before. Such a simple question, and yet not so easy to answer, with any honesty.
This whole part of my life, seems to be in limbo. It has its ups and downs, mostly downs, and the stress is taking its toll, or is it? Am I perhaps using some form of self defence mechanism, trying to detach myself, in order to better cope? I wish I knew the answers, but I do know, I am tired more, worn out more, and I shouldn’t be.
It really isn’t hard to do laundry every day, and yet I seem to think it is.
It really isn’t hard to wait for her to decide to go lay down, yet I seem annoyed by the interruption, not like I am actually accomplishing anything before hand. That bugs me, because really, there is enough time to do what I should do, and yet, I seem frozen, unable to make a move. Like updating my blogs.
Hell, I call myself a writer, so why can’t I do that? Why do I let myself become so frozen or mired up in the stress. It is all manageable, and what really is getting at me, is that we need the money, but I am not doing what I need to do, to make that money. I know I should be writing, should be updating, creating, yet I would rather procrastinate. Worse, I am using Mom as the reason, and truth is, she isn’t the cause.
Laundry, getting her juice, making dinner, are nothing but excuses, for not doing what needs doing, yet even knowing that, doesn’t seem to make me do more, or shake off those feelings. It is like some strange hand, pushing me away, when I know, it is my own laziness, or inertia.
I don’t get what is happening, because I don’t think I am stupid, nor do I think I am all that lazy. I get up at 6:30am every morning, and yet come midnight, I feel like I did nothing but mark time. Surely I should be doing more, and that time I am up, should be more than enough time to look after mom, and do my work.
This is all so confusing, yet the movie has made me even more antsy, more nervous. Am I losing it, or am I just finding another excuse, to be lazy?
Difficult or Caring?
After yesterday, it seems to me that when you care about someone, about the care they are receiving from others, you become a ‘difficult‘ client. Myself, I prefer the word “Patient” to “Client” but it makes it easier for those in power, to “CANCEL” needed services for people, without remorse, or twang of conscience.
Am I Difficult?
I suppose it depends on how you look at it. If a person cares, and refuses to accept unqualified support help, does that make them difficult, or simply caring?
If a person objects to a 92 year old being man handled, because it might cause broken bones, or other serious health injuries, such as undue stress, does that make them difficult, or simply caring?
If a person steps in, to help a 92 year old with a cast on her arm, get out of bed, into a transport chair, so she doesn’t fall flat on her face, while the worker tries to have her do it on her own, is that being difficult, or simply caring?
if a patient is being washed, and has spent the night in a pair of depends, and instead of removng the soiled undergarments, you proceed to wash them, and you step in, to have those soiled items removed, as soon as possible, is that being difficult, or simply caring?
Think about it for a second. If your job is to help clean a person, after they’ve been sleeping, does it not make more sense to remove the soiled clothing, all of it, before commencing to clean them up?
Would you like to sit in wet undergarments, soaked with your own urine and feces, while someone is slapping moisturizing lotion on your back, after pushing and pulling your body around?
Everyone has their own way to do things, but you know, there is such a thing as common sense. You do not let a person remain in soiled undergarments, clothing, for any length of time. To begin with, it irritates the skin, never mind the stress it creates for that person. When your skin isn’t in the best of shape to begin with, having it coated in urine for any added length of time, is simply irresponsible.
So am I being Difficult? Or simply caring?
Seems to me, that when you fail to even notify a patient, that you won’t be providing any service, or that it will be interrupted, you are deliberately attempting to force people to remain silent, when their are issues with the quality of care. When you CREATE a climate of uncertainty, you are adding to the stress load for the Patient, as well as for their 24/7 caregiver.
So if one objects to that, is that being difficult, or simply caring?
