Depending on the company, what you see and hear is not always accurate.
Brave face, stoic independence, and knowing your audience reign true. Always present in the day and the life of the ‘annoying short-term memory lapses.’
Persistent illnesses are here and look to be long-term with a lack of energy, labored breathing by a simple walk to the car, and the frustration of being unable to be as agile and ‘on the go.’
Think or say what you want about my methods, but they are hers and create a quality of life many are jealous of due to the grace and kindness shown for the declining health of the mind and body.
It is not my frustration I speak of; it is the one who suffers. I watch each day and know without a doubt that times are changing.
Grace
Empathy
Kindness
Patience
An argument resembling a nuclear meltdown, to the feelings, to the nothing. That is each day when the outside world rocks the stable bubble created for the safety and well-being of the one in control of how each day looks.
The meltdown almost always ends, and the scheming begins. The mood and tone resemble a teen about to manipulate a way out of the house without the parents knowing.
Years of experience and excitement of brand new ways to get what she wants at any cost.
There is a misconception with Alzheimer’s care that the one with the disease is daft and incapable of rational thought. The reality is, that short-term memory loss does not mean being unable to understand their feelings. Feelings range from the memories of the long-lost past or the fear of the future or simply the present day and month and year of right now... Maybe to repeat in the loop for days and days.
Understand what is felt, just not necessarily the why or how. Content and context lost, twisted, added, or subtracted from. For fuck's sake, if she doesn't know, how in the hell is it expected of anyone in this House of Caring?
Assumptions of real life aren't tolerated here, not now~ not ever again.
Understanding emotions in the present moment adds complexity to communication dynamics and its connection to caregiving and emotional well-being. If doctors struggle to fully comprehend the how, what, and why, how can caregivers be expected to fulfill their responsibilities without being unfairly blamed for all the challenges faced by the outside world? Perhaps a new term like "the Outside World" could be considered for others. It seems like a rebranding might be on the horizon.
Feelings and awareness of changes can be daunting and difficult to articulate, yet they remain a reality. Recognizing breakdowns in communication can lead to overwhelming anxiety, possibly resulting in outbursts or silent withdrawal.
The rationale behind the unfolding of this journey is also a significant factor to consider.
‘I know what this looks like, and I am so sorry; I don't want to be a Burdon or put you through this.’
Lack of trust creates cautious skepticism and frustration. Honesty and omission of the worst in the divisive nature of a fast-paced world spinning around this slow trolley~ headed to a full stop.
Relationship dynamics and the reasons for the decisions made over the years BY THE ONE are always present. It doesn't mean you are the recipient of the truth and purest form of it; it means you get the version of whatever the relationship is and was for the one.
The hardest pills for the outside world to swallow are the subtle changes that alter the present and future. The changes are so nuanced and have layers that the outside world needs it to be in a nice little box with a perfect little bow on top. This isn't a cookie-cutter disease with a map of what happens next; it is that each brain is different, so each day and journey will be similar, but with very distinct personalized demons and stresses, only a few will be strong enough to witness and survive.
Changes are here never to return to the before and, unfortunately, never to truly improve ~ only to be infinitely harsher and more complex moving forward.
Grace and kindness are buzzwords for the mental health and well-being of 2024. Grace and kindness should be present for all, but if they are unavailable for all, they should be present for at least one.
In this context, the ethical implications of questioning the transparency of information within a palliative care facility are profound. The very notion of debating the extent of information provided in such a sensitive environment can be seen as a betrayal of trust and a violation of the fundamental principles of care and compassion. It is a stark reminder of the vulnerability and fragility of those in need of palliative care, and the importance of upholding their dignity and autonomy.
The act of having to plead for assistance, especially in a situation as delicate as palliative care, reflects a systemic failure in the provision of support and resources for individuals facing end-of-life challenges. It underscores a lack of empathy and solidarity within the caregiving community, where compassion and understanding should be the guiding principles.
The introspective reflection on one's own actions and motivations adds a layer of complexity to the narrative. The realization of being perceived as ruthless in the pursuit of securing autonomy for a loved one highlights the intricate dynamics of caregiving relationships. It speaks to the intricate balance between advocating for the well-being of a vulnerable individual and navigating the complexities of power and agency within the caregiving dynamic.
Ultimately, this contemplation delves into the intricate web of emotions, ethics, and responsibilities that define the experience of caregiving in palliative care. It sheds light on the multifaceted nature of human relationships, the challenges of navigating end-of-life care, and the profound impact of individual actions on the lives of those we care for.
Amid the relentless chaos and nonsensical whirlwind that seems to engulf us, the question lingers in the air like an unresolved mystery: who will emerge as the beacon of order amidst this tumultuous storm? As we witness the harsh outside world hurtling by at an ever-increasing speed, a peculiar phenomenon unfolds before our eyes - time itself appears to be defying its nature, slowing down to a pace that feels almost excruciatingly sluggish. It is as though we are caught in a paradoxical dance between the frenetic pace of the external world and the languid crawl of time within our consciousness.
In these moments of dissonance and discord, the need for a guiding force to bring coherence and stability becomes ever more pressing. The clamor of uncertainty and confusion echoes loudly, reverberating through the very fabric of our existence. Yet, amidst the cacophony of the world's relentless spin, there exists a silent plea for someone, something, to step forward and impose a semblance of order upon the chaos that threatens to engulf us.
Perhaps, in this juxtaposition of accelerating external chaos and decelerating internal time, lies the key to unlocking a deeper understanding of our reality. It is in these moments of paradox and contradiction that the seeds of transformation are sown, waiting to blossom into a new paradigm of clarity and purpose. And so, we find ourselves at a crossroads, grappling with the enigma of time's elusive dance and the urgent call for someone to rise and bring an end to the madness that surrounds us.
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