Are you OK?

A seemingly innocuous question, vague in meaning, open to interpretation, and often difficult to answer.

I catch myself asking my wife if she is OK all the time. I mean all the time, like at least every hour, maybe every ten minutes, sometimes multiple times a minute. It’s not always a useful question since if she really isn’t OK, she likely wouldn’t be able to tell me anything, and even if she is OK, her communication difficulties limit her responses to a small nod, a weak “yes”, and often nothing at all.

Still, I keep asking.

Should I be asking a different question?

Considering how much time I spend with my wife and how intimately I know her, I still spend hours each day wondering how she is feeling. She rarely complains, her face rarely shows emotion, and there are no diagnostic tools that tell me what’s going on in her head. So, I ask her if she’s OK when she’s just sitting there. Or if she coughs. Or if she has difficulty swallowing. Or if her eyes look different… You get the point.

I’m pretty sure it drives her crazy, and I’m frustrated by the lack of a definitive answer, but what’s the alternative?

Asking the question differently – How are you feeling? Do you need help? Is something wrong? – evokes the same response. I’ve tried giving her a bell to ring when she needs something, but she used it only when she needed the television channel changed.

Speaking of TV, last year I watched the popular NBC show “Zoey's Extraordinary Playlist” that has a character who struggles with a neurological condition called progressive supranuclear palsy (PSP) that keeps him in a state like my wife’s. His daughter Zoey’s “curse” is that she can hear what people around her are thinking because they burst into song and dance. Thankfully for Zoey, her curse allows her to hear firsthand what her dad wants and needs.

I keep wishing for that curse.

It’s difficult to discern the state of your loved one (when they can’t communicate)

My situation has fine-tuned my senses to be sensitive to my wife’s every little behavior. I can hear a change in her breathing from across the room. I can sense her level of fatigue from how she is sitting. If she’s fidgety, I know something is up. I’m overly sensitive to how she smells. I should consider getting a job in surveillance.

Sometimes I feel like I expend most of my energy during the day tuning in to her every movement, breath, gurgle, blink and more.

But wait! This sounds familiar… Oh yes, I know, it’s exactly like having a newborn. When you first bring home your bundle of joy you can easily drive yourself to the point of exhaustion diagnosing every little action. Note: I only have one child, but I’ve heard that parents don’t feel as compelled to surveil their second and subsequent newborns. In the case of looking after my wife, this will be ongoing.

You may not need to go to these lengths to know how your loved one is feeling, but it doesn’t hurt to turn the sensitivity up on your awareness. Aside from obvious communication issues in our case, there are other reasons a person may not be forthcoming about how s/he feels.

Some reasons include not wanting to be a burden, feeling uncomfortable being assertive asking for help, being confused or disoriented, or having a medical condition that can create dementia-like symptoms in TBI (traumatic brain injury) and senior patients. The answer you get when you ask the question isn’t always reliable, so it’s best that you develop your own sixth sense to validate what you’re told.

Don’t take it all on yourself

One additional point worth mentioning is that it’s important to ask other people for their opinion about your loved one. While I try to stay overly sensitive to my wife’s needs, I’ve realized that fatigue takes its toll on my perception. You can find yourself missing things or just getting used to something that a new set of eyes finds to be a problem. I rely on my sister, my wife’s closest friends, her psychologist, neurologist and physiatrist to confirm my perceptions. I also encourage them to tell me when I’m being too protective or paranoid.

The list of must-have qualities to be a good caregiver is long and it’s impossible to be everything on the list. Two qualities, empathy and sensitivity are at the top of my list as they are the behaviors that keep me connected to my wife, allow me to determine and meet her needs, and most importantly, protect her when she’s in danger or ill. Practicing these skills will help you take better care of your loved one.