By P.M. Kearns

This is an essay by award-winning writer P.M. Kearns. P.M., or Patty, is a full-time caregiver of her mother with Alzheimer’s disease.

No question about it: caregiving can affect your health. Simply put, caregiving is far from easy. Physically, intellectually, emotionally, and spiritually-speaking—it takes all you’ve got.

What’s more, caregiving can unearth strong feelings, and moods that run the gamut from ecstasy to loathing. Unbeknownst to you, you may be found at fault for things outside your control at any given time.

The realization that you are the Hidden Caregiver can be insidious: you’re in the shadows, unknown. You might well feel that you are in an Unknown Zone, where nobody sees what’s really going on, or what you are going through. No one could even begin to imagine! How could they?! You strive to make the unpredictable look normal. Your ability to balance your time in the real world with your time in the Unknown Zone is amazing. All the while, the person in your care with the catastrophic behaviors that you bear the brunt of goes cheerily into the world, day after day, all gussied-up with a great big smile that you have often put there. By looking at them, those on the outside might think that everything is fine.

Putting Up a Good Front

How could anyone guess how things are breaking down behind the scenes? Your family and friends are all so caught up in their own lives, and you are trying your best to pretend nothing is wrong, so it is a rare person indeed that can see beyond the façade and guess the true nature of what you are going through behind closed doors. It is difficult enough to schedule a date to get together socially, and when you are finally able to get together with friends and family you are hesitant to discuss your personal situation. Everyone has problems, and you can’t expect them to celebrate you as their peerless hero.

Meanwhile, you can’t recall what the word “social” means, because you’re constantly on call with incessant bathroom clean ups, the changing of wet beds, the tripling of laundry output, and frequent trips to the store to buy disinfectants and cleaning supplies. Add to this the seemingly never-ending visits to the pharmacy / physician / physical therapist / hospital / pharmacy / podiatrist / dentist / pharmacy / pharmacy / optometrist / ophthalmologist, and other specialists too expensive to mention and it is easy to see how things can seem overwhelming. You do all this, of course, while shopping for food and preparing healthy, nutritious meals for you and the person you are caring for, making sure they take all their medicines on time and in the correct dosage every day, and administering a myriad of complex treatment regimens to a person who all too often is less than grateful.

What Spare Time?

Oh yeah, you have to do all of this in your “spare time”, since you have to work a full-time “paycheck” job to pay for all this. Quite often, the only alone time you have is the hour’s commute to work and back, which can be its own little issue depending on traffic. By the time you get home from work, you’re exhausted, and often have trouble thinking straight. You attempt to relax before you must make dinner, but find yourself rehashing the same repetitive problems, the blank stares, the unending questions, and the unexpected (though becoming expected) and undeserved accusations. You attempt to patiently and lovingly oversee and empathize with the latest unusual activities, but can’t shake the thought of the further cleanups and sordid aftermath of said activities.

Your weary eyes fall on the piles of unopened mail that have built up into mounds, which makes it look as if the tables, available counter space, and any remaining dry, unused beds, all appear to be suffering from a rare and oversized form of the mumps. What does this mean? Naturally, you can’t focus long enough to figure out what’s falling through the cracks, what’s for dinner in this increasing mess, or how things seem to multiply when you’re broke and at your wits end.

You are a Hidden Hero

Caregiver is a sacred word, but can often be associated with the word clutter, especially if you’re an unknown giver of care. Caregiving is Love in its most advanced stages, though as discussed above it can be fraught with many other emotions. Caregiving, whether you are a known or unknown giver of it, is a beautiful thing, and you are beautiful to provide it. This can be easy to lose sight of when you don’t get recognition, when nobody notices how your own life as you once knew it is totally unrecognizable. You feel invisible, underappreciated, and frustrated. And in many ways you are. By now you must realize that you’re the Hidden Caregiver!

It’s okay. Life is messy, but you can still dream. Oops, I forgot; you don’t sleep. So it would seem that your hankerings for the basics, such as upkeep on things that are falling apart around you and repair of things that have already fallen apart, are just so many thorns in your rose garden.

Then…THEN, as if you couldn’t think before—the truly unthinkable happens. Your dear one falls, breaks a hip, has a stroke or suffers from some other debilitating accident. Nobody is around to hear your call for help. Oh, no. Can this really be happening? (Fear) How will you be able to take care of your loved one now? You’ll need a whole team of teams, and you will have to manage them all. But you can do this. You have done it.

You’ve been an ongoing crisis manager for years. Suddenly, (to everyone else) the veil is lifted. Everyone can finally see what you’ve been dealing with this whole time.

In their eyes, you’ve become…a Caregiver! See? You knew it all along. And think of how much they can learn from you!

Reprinted with permission: Families of Loved Ones Magazine (FOLO) Strategies and Resources for Caregivers, Spring 2005, Volume 1, Issue 2; ISSN 1559-9981 (c) Families of Loved Ones Magazine. Visit the Website at www.familiesoflovedones.com.