Webster’s dictionary gives these synonyms for nebulous – vague, ill-defined, unclear, hazy, uncertain, indefinite, indeterminate, imprecise, unformed, muddled, confused, and ambiguous. When people ask me how I’m doing as Jack’s caregiver, instead of my usual answer of ‘okay’, or ‘not bad’, maybe my answer should be, “My state of mind is nebulous.”
When Jack’s symptoms began, the image that came to me was of living in one of those bouncy castles. Each step threw me off-balance. A lot of energy was expended on adjusting and readjusting my center and any movement within our little world tended to tip me over, leave me flat on my back struggling to right myself. In these past few years I’ve gotten used to the ground shifting beneath my feet. My metaphorical challenge now seems to be not in figuring out how to stand, but in understanding which way is up, or out, or why in the hell I don’t just lie down and give up.
The other day a dear friend told me that, in order to survive, I was going to have to put emotional distance between Jack and myself. In truth, people have been telling me this for a couple of years.
“Don’t take his behavior personally.”
“It’s the disease talking, not the man.”
It took me a long time to accept this advice and I only actually heard the recommendation when it came from someone who knows and loves both Jack and me. It’s not that I haven’t been separating from Jack emotionally for a while. That’s a difficult sentence to type, even now, but it’s true. What’s tearing me apart is the constant competing needs to both grab each possible moment of connection with my husband, and at the same exact time, to guard against the empathy which makes my job impossible.
So, yes, my state of mind is often nebulous. I’m muddled, confused, my mind hazy with these twin requirements of care giving.
Let me give you a couple of examples.
On Tuesdays and Thursdays we have a respite worker who comes in to stay with Jack so I can have a break. Except, if I am not strict, hardhearted, sometimes downright mean about it, instead of me having a day off, Jack simply has one more person to wait on him on those days. It is simply not possible for Jack to understand the idea that I might be in the house but not available to jump up and fetch, or cook, or make a phone call, or run an errand for him. So, if I stay in my own home on those days, inevitably either I get no respite or I end up being so blunt with Jack about why I am not available to help him with one thing or another that we then have a day or two of him being pissed off because, as he puts it, “Sorry it’s such a bother for you that I’m still alive.”
Trying not to take this personally leaves me muddled. Angry and frustrated, as well as sad that Jack either cannot understand my need for some relief and privacy, or does not care.
The VA is well aware that, if I burn out or am physically crippled by the demands of care giving, they will be spending a much larger amount of money for Jack’s care. Good skilled nursing is incredibly expensive and, frankly, hard to come by. They provide me with one month a year of respite care – away from home respite care. In our case this means Jack goes to the San Francisco VA for two weeks every six months. He stays at the Community Living Center, meets with all the VA specialists he needs to see, and has all the tests done that the neurologists order. I drive him the three hundred miles down the coast. We stay one night just north of the city, usually in Petaluma, drive into the city the next day, get him checked into the respite facility, and then I attend a two or sometimes three hour neurology appointment with him. He then stays at the facility and I come on home for two weeks of R&R. On his next two week stay the VA is even going to transport him (and provide an in-trip caregiver just for him) back home to me when his two weeks is over.
For me, this two week respite is a much needed break. For Jack, it is proof that I do not love him. How could anyone need respite when they have the near-royal privilege of caring for The Jack? Of course, he intellectually knows this is not true. Kind of. But it feels like abandonment to him, and if I do not harden my heart for weeks before and all during his stay, I will not get this respite. So, I cry the first hundred miles on the way home after leaving him, but I keep the car aimed north.
At the same time, if I lose the emotional connection, the intimacy between Jack and myself – the love – then I have put my life on hold for nothing more than a job. More importantly, unless we get very lucky, these are the last times Jack and I will have together. I have a huge and pressing need to make each day count, to be present for those moments when the old Jack is visible, to enter into play and laughter with the man with whom I have enjoyed almost three decades of marriage.
So, yes, today’s post is brought to you by the letter N and the word nebulous.