Respite: a short period of rest or relief from something difficult or unpleasant.
rest, break, breathing space, interval, intermission, interlude, recess, lull, pause, time out; relief, relaxation, repose; informal breather, letup
It’s highly recommended by anyone who knows anything about being a caregiver. If a caregiver doesn’t get respite, they will soon burn out: They will get sick, they will get depressed. “Yes!” I say, and “Amen”. It is a must. I want that breathing space. I want an intermission. But how, exactly is a caregiver supposed to make that happen? Well, as with every other part of the caregiving experience, there is no one answer to this. All I can do is tell you of my pursuit of the informal breather.
I can remember reading The Caregiving Wife, and thinking how wonderful it would be to follow the author’s example of taking a two week vacation every year (even better, the example of the woman who went to visit her family in Argentina for a month). Long vacations aren’t something we did even before the stroke. Now, with my husband so adamant that no one will see his personal effects but me, the idea of leaving for two weeks and having to come back to a man who has refused to bathe or change his clothes the entire time is just too much to think about. I had hoped that eventually someone else would make enough headway with him in the trust category to change this, but he has remained steadfast in his insistence that his body is for my eyes only – romantic, isn’t it?
On top of that, there is the issue of paying for someone to stay for an extended length of time. I can only surmise that the author of said book was fairly wealthy. By the time I paid for two weeks of care, I would probably be able to afford camping in the back yard (if I could borrow a tent and the pecan trees were bearing). So when people suggest that I should go see my son who is now stationed in Hawaii, or that I should renew my passport, it’s hard to come up with a polite answer. These things are just not an option for me right now. I would imagine that there are others who care for their loved ones who have even less disposable cash than I do. Prolonged illness can take a pretty big hit to the budget, and few of us live our lives in a way that prepares us for such a time as this. So it isn’t that we don’t understand the need for respite, it’s just that sometimes it is hard to see our way clear to actually get it.
While the extended vacation remains out of reach for me at the moment, I have found some ways to get respite without it. My closest respite is my back porch. There I am surrounded by trees, and the sounds and smells of the outdoors. I can play my music and dance, I can read, I can have a glass of wine, or a cup of tea. With the addition of a wood stove and a fan, I can extend my days to the majority of the year. Right now, it’s too hot most days, but when it rains, I am there. Our house has what is called an “open floor plan”, meaning there are very few doors other than to bedrooms or to the outside. This is good for a lot of things -respite is not one of them. With all my bedrooms spoken for, the only door I can close myself behind is the one to the back porch. Oh how I love that porch!
My car is also often a venue for time out. When I get in my car (which I love, in case I haven’t mentioned it lately), I plug in my iPhone so that I can play my music over the speakers. I crank up the volume and open the windows. Yes, I’m that person at the stop light. I sing along until my throat hurts. This is my relief from the imposed quiet in my house.
I have once again begun to accept invitations to parties and weddings. If they are close enough to home that I know I will only be gone for a few hours, I set Strokeman up to be alone for a time and go on my merry way. If I need to be gone longer, I arrange for someone to stay with him. It isn’t always easy to be at these events by myself, but I have found it is a better option to staying at home and stagnating. These interludes help me be more attentive and accommodating when I am home.
I have a sitter that comes every other Monday for a full 8 hours. I use that time to enjoy visiting with friends or family, running errands, working out at the gym followed by a bit of relaxing by the pool, whatever suits my fancy. I have also been using those days to see museums and points of interest near my home that I have never made the time to see. I was doing this once a week, until all the appliances in my home started dying. If I ever get everything replaced and paid for, I might go back to once a week. For now, I feel content with what I have.
Finally, a few times a year, I do what it takes to go away for a weekend. I can’t afford to do this often, or for very many days, but if, and when I am given the opportunity, I take it. And if it is for an important enough event, I bite the financial bullet and pay for someone to come stay with Strokeman.
The main issue with caregivers is understanding that respite is a necessity for survival. We who are healthy and doing the giving often find it hard to give ourselves permission for recess. We have to put up our defenses against the voices in our heads (and sometimes from other people) that say we are being neglectful or selfish. Our loved ones will not die if someone else takes care of their needs for a day – even if they don’t do it exactly the way we would want them to. Getting a few moments without being at someone else’s beck and call is a way to recharge. When I return, I have a little more patience and a little more forbearance to tend to the needs of my man.
Perhaps the things that help me recharge are not the same as the things that help you. I will have to trust you to be able to generalize. Whatever it is that rests your body, mind, and/or spirit; find a way. If someone offers to come sit with your loved one while you get a break, say yes! If you can afford to pay someone, pay them! If someone offers their home as a place you can go sleep undisturbed, take it! If all you can managed is to go shut yourself behind a closet door for ten minutes, do it! Take a break, or be broken.