Thoughts about the person standing next to you

Posted by Allen Rucker in Life After Paralysis on November 28, 2018 # Health, Caregiving

My humble advice: don’t believe the people who say, “Don’t sweat the small stuff.” It’s all small stuff and it’s all worth sweating about.

This is what I’ve learned, in a peanut shell, after a few weeks shy of 22 years in a wheelchair. I can’t speak for you, because I don’t know your condition, but I’m your dead-center normal para – middle of the back, middle of the road in ramifications. It’s a life filled with continual hassles and petty health matters that can easily flip into non-petty health matters with a little careless disregard. But if I stay health and pay attention to the small stuff of health and hygiene, I’ll live to be one old man.

There is small stuff health-wise and there is small stuff behavior-wise and it’s usually the latter that causes most friction and outright antagonism between you and your designated caregiver or helpmate, the person invariably standing next to you. “Caregiver” sounds like a paying gig requiring a starched white uniform. Many if not most of us are not quite ill enough ill for professional nursing care, not even close, as far as we know. “Mate” is what we need. A skilled, resourceful, compassionate, forgiving, and attentive mate.

But, as Tony Soprano once said about being a modern mob boss, “Nowadays, who wants the (bleeping) job?”

Millions of people, apparently. And millions of small health problems get dealt with daily because at least two people are on the case. You, the care-givee, know all the benefits – the wound gets dressed, the new air mattress gets found, the salve gets applied to your chronically bum shoulders, and half of your body you can’t even see gets a routine once-over. You get the idea. A lot of car trips are involved. It becomes part of the web of your life, both lives.

Which is the main point.

What an off-the-shelf paralytic impairment like mine tends to dictate, or at least dictate to me, is to be ever vigilant – and if possible, borderline paranoid about – every significant movement of the day. You make a plan for every battle, even if that battle is avoiding pressure sores while reading a potboiler in your La-Z-Boy. Prearranging your life like this is necessary and in most cases, masterable, but the price is the loss of spontaneity. It demands a double minded-ness, that after decades, can be wearing.

Of course, that same precautionary mind-set applies to your mate as well. His or her life also loses spontaneity. They too become enmeshed in predicable, and usually limiting, patterns that guard your health at the expense of so many other options, many of them spur of the moment involving some risk. After 22 years, I’m not even sure what those options might look like, and I’m sure my own mate feels the same.

It’s the small stuff, sometimes infinitesimally small stuff, that will drive him or her crazy. My dresser drawer is all of six feet away from my bed and yet I’m always forgetting to put fresh clothes out for myself. I need someone to hand me those clothes. Since Jeeves the butler isn’t available and transferring in and out of a low air loss mattress, which is very close to the water bed aesthetics of the early 1970’s, is slow and deliberate, then you yell for a little help. The first 900 times work out fine. But on the 901st bleat…

Even if, in small requests for service, you are decently thoughtful and resourceful, there is still the task of paying attention to health matters that begins to order both lives which can lead to a caregiver’s resentment and a care-givee’s exaggerated neediness.

In our own situation, we are both getting older, which means many of the tasks and concerns carry over from paralysis to the simple act of aging. And they pile up on each other. Let’s not get started here.

If you are the care-givee, the least you can do is to be mindful of at least a couple of things. One, if you can deal with it yourself, do so, gladly. And two, that person helping you in myriad ways has patterned his or her life to sync with yours. When the occasion arises, do the opposite.

Sorry, time’s up. Next session: how to slow down for your health without anyone noticing.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.