Going It Alone
It isn’t a subject I really want to think about, call it perhaps Denial, but then again, maybe it is simply a case of not wanting to face the reality of life. I mean, we are born, we live for however long we do, then we die. It is just that, nothing more, nothing less, unless we are fortunate to have some special gift, talent, that will let our lives be remembered.
My own life, will not be remembered by many, if any, and yet it hasn’t been an issue, at least not until now.
Mom is 92, going on 93, and she too will not have many who will remember her. Even my pathetic attempt at trying to make this site for her, will more than likely pass off into the vastness of cyberspace, an odd visitor or two, and that will be it.
I never really realized, just how much a loving partner can play in one’s life. I used to fight, argue with Dad, and yet I see how much Mom longs for him, even now, and I wonder, will David feel that way about me, when I have left this earth? Maybe I am spending too much time, thinking about what is coming, or maybe not enough?
This life is fragile, one can go at any time, and Mom has had a good run. I know that, and I know too that she is in pain, but fights on. Yet death will be a release, and yet too, if one believes in God & heaven, she’ll finally be re-united with her soul-mate, Dad. As much as that should comfort me, it doesn’t. Call it selfishness, or whatever, but I want to cling on, to hold her with me, though I know the end is coming. Not today, next month, or even maybe next year, but coming it is, which makes me tremble.
Yet wanting that, I still find the daily tasks annoying, making me irritable, angry, and depressed. I find fault, or talk to myself about her, in a not so loving way. It makes me think of being a bad person, & yet deep down, I want her to be here, to be able to look over and see her reading her book, or the newspaper. It is a total contradiction of emotions, that leave me confused, dazed even. And yet, this is the life I lead, and refuse to change.
I know one should have ‘the talk’ with those who face death daily, such as Mom. I am sure she wonders about what it will be like, if she will meet up with the spirits of Dad, of her parents, siblings, or will it just be an emptiness. I guess, I too, think about that, though try not to.
While there is lots of stuff, about having that ‘talk‘ there is really nothing about who is there to talk to me, the one giving the talk? How do we, manage to cope with dealing with that eventuality? I suppose it is a bit selfish, but there is a feeling of emptiness, of becoming alone, that frightens me. Will David be there for me? or is it already too much for him?
Frankly I think it is too much for him, not even sure how he has managed all these months, as it is, and I know, it is only going to get worse really. I mean if she lingers, if her condition goes from being semi mobile, to immobility, what then? How will he cope with that, and how will he adjust, or will he?
Hell, how will I cope? I am already feeling worn out, broken and just exhausted, but who is there to talk to? David is the love of my life, yet he is not there, or not willing to be there. That hurts, and makes it even more overwhelming, more desperate. I don’t know anymore, where one turns, where one breaks out of the self imposed isolation, that this task creates.
Impact
You know, the frustration levels are rather high, as each day comes and go. The reality of caring for someone much older, is a constant source of annoyances, of frustrations, and family members who don’t understand, only make it harder. Or is it, that I don’t understand?
I listen to David, and at times want to strangle him, for his insensitive remarks, his selfishness really. Least at the time that is how it feels, and maybe misplaced, but then again, is it? Is it wrong for him to want to look forward, to a time when Mom isn’t around, consuming my time, our minimal resources?
Is that selfishness, or being practicle?
Maybe it is a form of denial on my part, not wanting to contemplate the future, when Mom is gone, or maybe just a sign of total weakness. It is a conflict that rages inside of me, and I am unsure how to deal with it, or cope with it. In my mind, it is like I am giving up on her, if I let myself think about a future with David, without Mom. I am not even sure I will survive that moment in time, and wind up questioning my own confidence, my own abilities.
This is the reality of being the sole caregiver, I think. A sense of utter loneliness, of being isolated from friends and family. My Cousin maybe has the right approach, of being totally unemotional, but I can’t seem to reach that level of isolation. Nor do I think I want to.
To cut yourself off from what you feel, just seems wrong. David, to some degree, does that, and it irritates me no end. Yet too, maybe it is the right way to cope, to handle a very stressful situation. Course it winds up putting me on edge, being guarded in what I say to either of them, for fear of not getting the response I feel, I deserve. I am afraid of lashing out, at their insensitivety, at their lack of compassion, but maybe I am wrong.
The self doubts seem to expand, never diminish, which only adds to the level of frustrations. I wonder what it would be like, to just run away, to go and hide from not just caring for mom, but from being married, from being even a miniscule part of society. I feel like life is just a cruel joke, at times, that I am unsuited to be in.
Simple chores, become nightmares. Minor disagreements become roaring arguments, and through it all, I have this urge to tell whoever, to just fuck off. I know it is wrong, maybe even selfish on my part, but I am tired of the burden. It seems to invade even my sleep, so that the mornings are just a carry over from the night before. There appears to be no rest, no moments of being off.
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.
Home Support Workers Guideline
Home Support Workers need to understand a few basic rules.
- The first rule, is simple. YOU are in someone’s home TO HELP, NOT HINDER.
- Yes, there are some Patients who cannot answer the door, and it is left unlocked for the worker to enter. HOWEVER that is not the case with MANY so really, DO NOT ASSUME YOU ARE SUPPOSED TO WALK IN.
- Frankly the Company providing the service should have each assigned worker, clearly instructed on this matter, and MAKE SURE THEIR EMPLOYEES KNOW IT!
- Patient Safety should be right up there, at the top of the list.
- It should be simple common sense, but obviously it isn’t, or so it seems with the workers who show up to this household. You do not give the Patient a walker in the wrong position.
- In other words, if the walker has two wheels, and skids on two of the legs, you DO NOT give them the wheels facing them. The SKIDS OR RUBBER ENDS are what faces the Patient.
- This allows for them to easily manouver the walker, doing it ass backwards, impedes their walking, and can lead to the walker being caught on carpet, door runners, etc, WHICH CAN LEAD TO FALLS.
- Follow a Patient from behind, NOT LEAD THEM, if they are obviously unsteady on their feet, or use a walker.
- It isn’t Rocket Science you know, if they are unsteady and you are leading, you can’t help them if they become unstable.
- By being behind, you can easily lean over to correct their motion, to avoid obstacles, assuming you are paying attention, and keeping an eye out for such things.
- It should be simple common sense, but obviously it isn’t, or so it seems with the workers who show up to this household. You do not give the Patient a walker in the wrong position.
- Washing & Drying is not about a splash of water, a dab with a towel.
- It is why you are there, this is your PRIMARY RESPONSIBILITY.
- Those in your care, are unable to properly cleanse their private area, as well as their more accessible regions. You are only adding to their discomfort, when you fail to adequately insure that their entire body is cleaned, with warm water and soap.
- Yes, it can be unpleasent to do, and we all may not like it, but this is important to the continued health of your Patient. Failing to do this properly, and completely, can and does, lead to serious health issues.
- Proper Drying is PARAMONT.
- This is how irritations and skin abrasions can happen, do happen.
- If you fail to properly dry your Patient, in their sensitive spots like the groin, infections can occur, and become difficult to treat, to eradicate.
- People sweat, and they can’t always reach down, to dry themselves.
- Urine can collect, or lay against the skin, so if it isn’t dry to begin with, if the pores are open, infections happen.
- What is worse, is that many elderly patients don’t complain, don’t communicate their needs, so you have to be able to know, if they are dry or not.
- YES it takes MORE TIME, but damn it, this is about caring for people, and their needs, not doing some half assed job, to be able to move on to the next victim.
- Those in your care, are unable to properly cleanse their private area, as well as their more accessible regions. You are only adding to their discomfort, when you fail to adequately insure that their entire body is cleaned, with warm water and soap.
- It is why you are there, this is your PRIMARY RESPONSIBILITY.
- Transitioning from sitting to standing, and vice versa is an art, a science even.
- Most older Patients have issues, with their bones, their strength. You can’t pick them up or sit them down, like they are a rag doll. YOU WILL CAUSE INJURIES.
- Lifting from under the arms, in the armpits is not comfortable for some, but this isn’t about YOUR COMFORT BUT ABOUT PROTECTING THE PATIENT.
- A Patient who has a brittle bones can easily have their shoulder seperate, or even their arm break, if you grasp too tightly. The key is to NOT GRASP THEM AT ALL.
- Lifting from under the arm, allows them to use what strength they have, and be kept secure, with your strength. Your arm is to guide them, give them that little extra bit of strength needed to get themselves up, or sit down.
- Most older Patients have issues, with their bones, their strength. You can’t pick them up or sit them down, like they are a rag doll. YOU WILL CAUSE INJURIES.
It really isn’t a JOB. It certainly is NOT an easy profession, and certainly the companies operating many of these in home services don’t give a rat’s ass about their employees, or their Patients.
HOWEVER, THAT IS NO EXCUSE TO DO A HALF ASS JOB, OR TO BE UNPROFESSIONAL IN YOUR CARE OF THE PATIENT TRUSTED INTO YOUR HANDS. THEY ARE VERY SPECIAL TO SOMEONE.
It really isn’t about money either, or at least it shouldn’t be. No one is paid enough, who does a loving, caring, job of being a support worker. They are worth their weight in GOLD and then some, because you see, THEY ARE THE ONE’S WHO CARE ABOUT THE PATIENT, NOT THE PAYCHECK.
