A VALLEY OF DARKNESS

Where have I been and where am I going?

It’s not like me to share my personal life publicly. I’ve always been of the opinion that it was something that people seeking attention do to make themselves feel better. That sounds harsh but it’s true about my belief on the matter. I’m breaking every instinct in my bones by sharing what I’m about to share with you out there on the other side of this screen. Why am I doing this? Partly because someone told me it was healthy to do so and also that people might actually be curious about why I’ve been scarce in recent times. So here goes.

In the late summer of last year my family received news that my mother experienced a fall in her home in upstate New York and was taken to the hospital. She was discovered on the floor after we requested a 911 well check on her as she had not been returning anyone’s calls for two days. In actuality, this has never been unusual for her. She lived alone and was the type of person that you can never reach on the phone but rather you might develop a more intimate familiarity with her answering machine. You might receive a call back in a few days in most cases.

That hospital visit turned into weeks and then into a couple of months as the discovery was being made that there was more going on than an unfortunate fall. The picture became clear that my mother was suffering from dementia and was rapidly getting worse. I had flown back to upstate New York to visit her during this time and observed what her situation was like in a memory care ward of the hospital she was in. I imagine I reacted like most people do when experiencing that for the first time. Shock and a sense of sinking sorrow as the situation became painfully clear.

During that visit I made the decision to move my mother from one coast to the other to come live with me. My significant other and I made the difficult decision that she would likely be better cared for in our home than in a shared room among strangers in a hospital ward. That decision has proven to be both good and bad in profound ways.

Dementia is perhaps one of the cruelest diseases any human being can suffer. It is slow, merciless, and profoundly unforgiving on the afflicted and their loved ones. A dementia patient with limited mobility, as is the case with my mother, requires 24 hour care by sometimes more than one person. Often, there are very little resources available to aide in that care unless the afflicted happens to be quite wealthy. Sadly, most insurance does not cover in any significant ways the care that dementia sufferers truly require.

Over these last several months, our lives have been tested to great lengths. Often, we lose both emotionally and psychologically. Each week comes with new challenges we have only read about but one can never truly be prepared for. The impact on caregivers of dementia sufferers is immense and as we have come to learn, deeply destructive to their every day lives and well being with often insufficient relief in sight. One comes to count each hour that goes well as little nuggets of gold pocketed like heal stones for the soul.

So, the cat being out of the bag, that’s where I’ve been. In this chapter of my life I am learning how to adjust to this lifestyle while trying to re-engage in my creative profession. I have been all but absent from doing much creative work, let alone professionally since this all started. For the record, I do not surrender to this. I am committed to navigating through this in a successful way. I don’t know what that will look like and it scares the hell out of me honestly but I don’t see surrender as an option.

While having to be present full time for my mother, I have taken the opportunity to get some study work in on creative areas I’ve long been drawn to. I’ve been studying anatomy, sculpture, and design in the blocks of time that become available. While I don’t know where I personally will land with all of this, my goal is to successfully create a situation where I can continue being a working artist remotely on a freelance basis. That is a very tall order to fill but it’s the only solution I see that works for these circumstances. I remain hopeful that there will be light at the end of this very dark tunnel.

Tobias Written by:

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