Managing the unmanageable.

Outside noise is an unavoidable aspect of memory care. The phrase, “every day is a new day and every hour is a question mark,” captures the complexities involved in caring for individuals experiencing short-term memory loss. This condition reveals the remarkable yet often overwhelming power of the mind, as caregivers navigate the challenges that arise from the inability to remember daily tasks or personal details.

It is important to approach these situations with sensitivity, ensuring that those who are affected are not embarrassed or made uncomfortable by others who may not fully understand their experience. The gradual changes associated with memory loss can transform familiar environments into sources of fear, as individuals struggle to grasp the reality of their condition. This shift often highlights the contrast between life before memory challenges and the current struggles, focusing on the legacy left behind rather than the life being lived.

For individuals who are high-functioning and capable of using logic to conceal their struggles, managing the realities of memory loss can be particularly daunting. Caregivers play a crucial role in providing support, helping to manage what may seem unmanageable. They work to make each day less painful, less stressful, and less frightening for those in their care.

Tasks such as remembering to take medication, maintaining personal hygiene, or adhering to a schedule can become overwhelming for those with memory loss. Caregivers take on these responsibilities, ensuring that critical aspects of daily life are attended to. Establishing routines creates a sense of structure and comfort, allowing individuals to feel more secure in their environment. Caregivers also manage practical needs, such as laundry and personal clothing preferences, to ensure continuity and familiarity.

Ultimately, caregivers focus on the essential tasks of daily living, allowing individuals with memory loss to feel supported and cared for without dwelling on the minutiae of their struggles. Their role is vital in providing the necessary care and comfort during challenging times.

When we think about daily tasks, it can be overwhelming. In-home caregiving often leads to most of the scheduling being managed by a primary caregiver, leaving planning largely up to that individual. When outside influences fail to help, adapt, or show any form of compassion, it can become nearly impossible to cope.

Boundaries are essential! They provide a sense of peace and create the structure needed to enhance quality of life, with or without assistance. In the early days, I often said, "If you can’t get on board, get out of my way!" I expressed many thoughts during that time: “Establish a schedule and routine. No surprise visits. Large groups and unexpected guests don’t work for our journey. I'm not being controlling; I’m simply outlining what she needs: peace, understanding, and compassion. Get on board, or get out of my fucking way. Are you blind? Have you no decency?”

The responses I received varied greatly, but one remark permanently altered the course of our future: “You are not family and never will understand. Stop burying your head in the sand and rein her in.”

Spoken to the person who provides the support I rely on every moment of every day. The battle had been lost. The reality was harsh and unyielding, forcing me to confront what the future would hold and how it needed to change. They never spoke again.

Damn straight I didn’t bend, I leaned in. I have always been a strong advocate for creating a safe space, both emotionally and physically, to the best of my ability.

Today, I see the success reflected in the questions I’m asked about how we navigated challenging and confusing times. I recognize that my approach is not without its faults. I often wonder how different the outcome could have been:

Should I have tried harder?

Should I have considered that others might not see things the way I do or understand what I understand for as long?

In the early days, I contemplated everything. I even sought therapy to help me cope with the chaos and disconnect. Perhaps I could have invested more energy in making the outside world feel comfortable and addressing the concerns of those who openly expressed their discontent with our situation. Maybe I should have been more accommodating, kinder, and more attuned to the feelings of others.

But who has that kind of energy?

The Dalai Lama?

The Pope?

Saint Mary?

If you find someone that perfect, please send them my way. I would love to learn from them.

Those who wish I had acted differently won’t change the facts for themselves, for her, or for me. If I had received even a bit of grace, I wouldn’t have felt so cold and determined to maintain a laser-like focus on our day-to-day struggles. This was especially true when faced with emotional outbursts that often felt like being punched in the face—literally.

I was punched in the face, and it wasn’t even during an argument I was involved in; I was actually trying to help everyone "lower the temperature" and return to a peaceful state. She may not remember the details, but she certainly knew how she felt. Today, it feels as if that incident never happened—lost forever in the recesses of memory.

One takeaway is this: don’t stand too close to someone experiencing an emotional outburst over issues that have been building for 70 years, believing it's relevant to what’s happening right now rather than 20 years ago. Providing memory care is not for the weak. You need to have quick reflexes; you must dodge but also react. In the end, I was comforting the tears that fell from the guilt she felt for her fist landing on my jaw. She definitely had a powerful left hook; she could have been a boxer.

I am asked all the time how we manage a life filled with unmanageable situations. The truth is, I don’t. I focus on providing a quality of life that feels like independence, even though it is an illusion for both quality of life and peaceful existence in memory care. I had a life before this journey; I might even have one when this journey has run its course. But do I have a personal life? No. I’m no different from any other caregiver with limited resources and no family support.

My story is not unique; it just has a more ‘in a glasshouse’ vibe for those who don’t know and make assumptions, while those who do know have opinions on what I could have done differently to make their lives better and more enjoyable. The outside world doesn’t think the way I do. I’m detailed in my approach because I’ve had years of experience before memory issues were diagnosed. I have ridden the waves of dysfunction for decades amid personal discontent—experiencing a “Do as I say, yes ma’am” vibe.

I share for two purposes. One is personal, the other is for the caregivers who feel alone, who have all this going on, and no one to understand. I understand more than I share, I see what others do not, I know the challenges and the triumphs, and I hope you know you matter. Even when the outside world doesn’t help you feel worthy, heard, valued, or god forbid, they one day offer the only help that would matter to the brilliant minds of the alzhiemers variety in the journey you are living in. Know that when it gets hard, there is always someone who can relate. Our journeys are different; everyone who knows knows. #iykykyk