For years I’ve attempted to get my husband to engage in activities that don’t include me, or my son, for that matter, so that he can have some free moments to just be Tim. Not Tim the father, Tim the duck and chicken caretaker, Tim the family chef or Tim the partner. Just Timothy Lenox Smith. But whenever I offered to stay home with our son so he could go out with friends or make a plan, the reasons were always the same: I don’t need to go out with guys or spend a weekend away from you two, I love spending time with you…I love my family, why would I want to be away from you?
Ah yes, I have a chivalrous spouse who truly finds happiness in the weekend trips we take throughout New England, the drive down to the nearby bookstore, or dinner out to a vegan restaurant. The truth is, neither of us have a group of men or women that we get together with, or even couples that we meet up with; we’re completely satisfied with the company we provide one another. Even though I know his preference is to make a family plan when we have free time, I have always had this thought in the back of my mind that he’s giving so much of himself to us that others aren’t able to enjoy the kind-hearted, intelligent being that he is.
I should probably mention here that Tim and I married over 10 years ago and at the time, I did not have chronic pain. For two years he had a wife who was able to lift objects, clean the house, take the dogs for walks and go on jet ski rides. For the last eight years, however, he has gracefully taken on the role of caregiver, father and husband.
Now, back to present day where I find myself delighted that Tim has accepted an invitation from his cousin to take a vacation. Tim has been hiding his anxieties as best as he can, but I know he has mixed emotions about leaving. The first step I think Tim had to take when presented with this opportunity was to wrestle with the notion that the loves of his life, both with chronic diseases, would be in charge of the home and caregiving for themselves. That’s a lot to take in for a man who worries if I don’t pick up the phone mid-day when he calls. (In his defense, I do have bad days from my autonomic condition, pain or migraines which have all caused me to stop what I’m doing, put my ringer on vibrate and lay down.) This had me thinking that perhaps Tim isn’t the only caregiver who would like to travel or engage in an activity, but they fear what would happen to their loved one with chronic pain if they were to indulge in much-needed self-care. That being said, I will now gift you my life hack list for the caregiver and pain warriors who may find themselves in a similar situation, where the caregiver may be considering taking a trip or a short adventure.
Open that line of communication
I get it, we all want to have some sliver of mystery in our relationships, but when it comes to living with a chronic disease, you need to be upfront and honest about what you’re feeling, when you are feeling it. The same goes for the caregiver, who is grappling differing, but equally significant challenges. It’s okay for either pain warrior or caregiver to feel that they need a little break from reality, the day-to-day obstacles that, if not balanced properly, can consume and take over every waking moment of your lives. Whoa, was that too grim and dark just then? Sorry, I’ll try to be mindful of not being too downbeat, but chronic pain can take us down that path at times, so take my virtual hand and let’s press on. While I adore my husband, his companionship and selfishly his physical ability to lift the chicken feed and dog food into their containers, I also enjoy the quiet moments I get to spend alone or with my son. When his cousin asked if Tim would like to go on a cruise, Tim didn’t automatically turn him down, and I didn’t automatically shake my head ‘no’ or give out a sigh. We talked about what measures we would have to take to make this trip work; we spoke candidly about any possible challenge the trip would bring about. I was proud that we disclosed our thoughts so well! This brings me to my next life hack: over-planning.
Over-plan and over-think (I do this on a regular basis!)
In our particular case, we had to think realistically as to how I could work full-time, care for our son and animals (AKA the mini sanctuary), remember to eat and make meals for ourselves. Before committing to the vacation dates, Tim called a mutual friend and asked if her schedule would allow her to lend a hand. That was planning 101 at its finest!
While you may not have to worry about lugging gallons of water out to a barn like me, you may have to plan for carrying out activities usually accomplished by your caregiver. Making a list of tasks that may be challenging while your caregiver is away might help you assign those tasks for another family member, friend or neighbor. Remember to account for the possible pain flare-up that may happen during this time. Go through a week’s worth of typical household responsibilities in your mind, jot them down and ask if your caregiver could complete those heavy lifting tasks before they leave.
Are there commitments you can reschedule to lessen the obligations you’ll have while your caregiver is away? Are there behind-the-scenes actions you carry out as a caregiver that you should make your spouse aware of, in the event of an emergency? Think of worse-case scenarios and plan ahead! For example, should the power go out while Tim is away, our friend is on-call so she can start up the generator and shovel a path out to the animals. Tim also asked a neighbor with a plow truck to drive by after a storm to see if we need to be plowed out. This is planning 2.0!
Ease each other’s minds
You need this. They need this. Be kind to one another when there’s an opportunity for one of you to step away from the life of a couple who juggles with chronic pain’s challenges to recharge the mind and body. Present opportunities for each other, without strings attached, so that your partner feels confident they can step away for a while. When the day comes for your other half to tuck away the caregiver title, deter from negative comments, thoughts or guilt trips. Their taking a breather does not mean they love you any less. In fact, it shows how much they’re committed to you. They need to care for themselves so that they’re in their best physical, mental and emotional state to be your support system.
Leading up to and even the day of his departure, I’ve been acting casual with the fact that Tim will not be here for ten days. That’s a long time for anyone to be away from their spouse, let alone a caregiver. But we’re going to be fine. How do I know? Tim and I planned his parting together. Spare house and car keys will be left for friends and family to pitch in. Meals will be prepared ahead of time as much as possible. After school care has been secured, should I run into traffic following a work meeting. Tim will be turning on his phone while at sea three times per day and calling at 7 pm each night. I’ll have the ship’s name, his room number, and the first born of the captain. Okay, maybe I won’t go that far, but you get the point: we’ve prepared for as much as we could to make sure Tim can truly enjoy his time abroad knowing his family will be cared for.
Bid your caregiver and worries farewell
Saying goodbye might be the hardest part of your entire process because for many of us, this may be the first time we’re away from our caregivers. In our case, Tim and I both travel for work and we are used to being apart for a few days. Others may have never experienced sleeping alone since being diagnosed with their chronic condition. I can tell you that you will be alright if you plan ahead, and this is coming from a woman with health-induced anxiety and panic disorder who worries about being decapitated while driving too closely to a truck with a ladder in its bed. It does take patience, practice, sometimes coping mechanisms (CBT skills acquired from a licensed therapist), affirmations, meditation (there’s a ton of free apps available!), a long phone call with your best friend, or maybe even a pint of ice cream. Hey, whatever works! I won’t judge.
Finding coping tools will help keep you become grounded and confident enough to let your caregiver practice self-care and relieve some of those anxieties of being on your own, your own caregiver. Oh, and I forgot to mention that self-care for the caregiver doesn’t need to equate to a week-long trip; some may find solace in a two-hour painting class, a daily one-hour trip to the gym, a book club, or trivia night with friends. Caregivers, please know you don’t need to feel bad for wanting to partake in activities that don’t include us. I think most of us pain warriors get it and understand. And if we don’t, talk to us openly and truthfully so that we’re on the same page. In the end, all we want is to be able to return the favor, the sacrifices you make for us. Let us ensure you remain happy, healthy and ready to continue being a part of our pain journey, because we love you.