What makes for quality respite time?

Ever feel the need for a break from your caregiving duties? We all do, even if for just a fleeting moment.

We call that respite.

 
The thing is, we each need to define and honor what respite means to us personally. And those around us need to honor that as well.

Take my daughter’s State case manager. He means well, truly. But his definition of “respite” involves sending our daughter off to a week-long sleepaway camp. “Think of all the time you’ll have for yourself,” he says.

What he doesn’t see is the three solid days prior to camp that it takes me to set out and label a week’s worth of clothing, medication, food, and other supplies.

He doesn’t factor in that camp is a half day’s drive away, nor that I must lug mountains of bulging baggage down to the rec hall once we arrive.

He doesn’t see my worry the entire time my daughter is gone. Worry about seizures, falls, misinterpretation of her communication, missed hydration...the list is endless. Even when I am able to surrender my worries, I can’t stop missing her.

He doesn’t see the illness she brings home every year. Last year, she picked up pertussis and shared it with me. I was sick a full six weeks following her return, sicker than I’ve been since the time I had mono in high school. This summer, she brought home strep and shared with the entire family.

You start adding up the half-week of preparations, the week of worry, the 3-6 weeks post-camp illnesses, and it doesn’t look a whole lot like respite anymore. Sure, it’s great fun for her. But respite for me? Not hardly.

Compare that to my dear husband, who has learned to accept the fact that I really, really like to be around my daughter. After all, she’s a truly likeable kid and I enjoy her presence. Add to that the fact that I can relax better when she is near.  Her health issues are ever-present and need to be handled carefully so they don’t blow up into full emergencies. I am not comfortable leaving her in the hands of anyone who doesn’t know her inside and out.

He knows I’d be completely miserable if he whisked me off to some tropical paradise so long as my daughter’s health is what it is right now. He’s a clever man, that husband of mine! (Sorry ladies, he's taken).

My husband planned the perfect “respite” weekend for my birthday last month. Instead of taking me off away from the kids, we all went away on a splendid weekend getaway. We girls schemed and shopped for our fancy evening wear, which was admittedly a whole lot more fun than setting out a weekend’s worth of supplies for a caregiver. We splurged on two adjoining rooms at the hotel. This gave my husband and me our privacy but the girls were still close by so I didn’t have to wonder what health issues may or may not be happening. For me, it was the perfect respite scenario.

That indulgent kind of weekend isn’t something we can afford to do outside of Milestone Birthdays (I’m not letting on which one it was...). To me, run-of-the-mill respite time is most restful if I can spend some time at home doing things I love that I wouldn’t be able to do if I were attending to my daughter’s needs.

Nothing is more restful to me than holing up for an afternoon in my sewing room, uninterrupted, listening to the laughter of my daughter and her wonderful caregiver as they enjoy a game or a movie together. Or I might go lie out in the pasture with a goat curled up under each arm and watch the treetops dance in the breeze.

Respite to me is getting to let go of the duty for a time. It isn’t escaping the girl or even escaping her health issues. In fact, I don’t want to be far from them. I just need a chance to breathe deeply sometimes, to immerse myself in something that isn’t related to care.

What about you? What do you do for respite? What would you do in your wild imaginings (keeping in mind this is a G-rated show)?

 (photo courtesy virtualphotographystudio at Flickr Creative Commons)


14 comments:

Clara-Leigh said...

Oh what a great topic and one we all need to consider!! For me, while we have a helper in the home sometimes, respite means being free from physical needs of my son so I can move about freely, not worry about his safety every moment, and do those off the wall, random little projects that so often seem laborious, but then with respite, seem calming. I love to be home, too. But I do love to "totally escape" from our home and run errands or be gone for a weekend for a medical conference or event. Interestingly enough, I find when returning from a whole day or few days away, I return and stress out over reorganizing things that were undone while I was gone!!! It is a really weird deal, and it makes me think that maybe it isn't the right thing to totally be gone more than I am. I love, love, love order and neatness, and respite care allows me to indulge this oddity and have fun with just being an adult without attending to someone else every second!!!

vlmaples said...

Uninterrupted sleep! Hands down.

Realistic? Sadly, no, but I can dream, can't I? LOL

Glad y'all got away and such a great time!

Rose-Marie said...

Clara-Leigh, I admire you for your organization (please don't look at my poor disorganized house!). That's wonderful that you use the help to free yourself to take care of the projects that nourish the soul. Sounds like a terrific respite plan!

I so relate to having to clean up disasters after being gone. It does make you question if the time away was worth it, even though you know in your heart of hearts that it was. Maybe a "respite package" should include a few hours of housekeeping help to put things back in order before we get back from our weekends away? That would work for me!

Rose-Marie said...

Valerie, you deserve that big stretch of unbroken sleep! I wish it was easier for you to get that.

Patti said...

LOVED this post, Rose-Marie! I have tried explaining this very thing to so many well-meaning people. They just don't get it... but YOU do! Respite is something I find WITHIN my little world, with my daughter close by. What nourishes my soul is creativity, so I've set my life up to allow for small chunks of time at my studio table, making art.

Rose-Marie said...

Patti, it's so nice to know you understand exactly what I'm talking about! "Resite within your little world"...that's a perfect way to phrase it!

I love what your creative escapes have allowed you to do! It's so clever, creative, beautiful--so healthy. Good for you!

Gabriella said...

Hi!

I found your blog several weeks ago and pop in occasionally. This topic is so meaningful to me when everyone seems to think they know what I need. I also love being home... in a different room, just reading blogs or crafting. I never thought of it as respite because our case worker seems to have her own ideas about leaving my little one at a center for several hours. I'm now armed and ready to let her know that I DO get respite!

I was able to relate to the worries and missing my child as well! I don't know why society considers spending time with our children as not allowing them to grow. I know that when I'm in the company of others, I feel happy. I'm sure that's how my son feels! I guarantee that if he could speak he'd tell me that he'd much rather spend time with mom and dad than a stranger over at a respite center!

Thanks for bringing this conversation out for the world to read!

Rose-Marie said...

Thanks for adding to the discussion here, Gabriella. I think you bring up some really important points.

Yes! Some of us DO find their time at home to be rejuvinating! I was reading just yesterday about a study (it was in the context of eating nutritiously, actually) that found home to be a place that increases happiness for many people. Why wouldn't that be true for parents of kids with disabilities?

And you bring up such an important point about the joy we find in the company of those we love. It isn't that the respite centers are necessarily bad places--none of us are saying that--but that there is joy in being with those we love.

Maybe our case managers all need to watch the Wizard of Oz..."There's no place like home, there's no place like home..." Dorothy was onto something, wasn't she?

A said...

Maybe it shouldn't be called respite. Why should help with a task that is more than one person can do 24 hours a day year after year, need any name other than "help"? Just plain help, defined by the person who requires it, not by an outsider, and certainly without any mandate about how or where a parent should spend the gift of time. To give such an obvious need and simple concept its own terminology kind of pathologizes it, creating yet another layer of separation from the norm.

Gabriella said...

Good point, A! Or... we can do just the opposite and start using "respite" to mean "help" or "TLC" in the general context. For instance, lately, I've been saying to family and friends, "You need some respite", to just mean, "You need some YOU time." I laugh because that word would never have been in my vocabulary 4 years ago, but now, I'm throwing it around in social contexts to just mean, Get away from your daily tasks and TAKE CARE OF YOURSELF! LOL!

I agree with asking for help and not having it be a huge deal - whether it be at home or elsewhere. It's taken me some time, but I realize that all people need help some time and it's perfectly ok to ask for it and to take it! In reading some of the above posts I learned that some people have in-home help (while parent(s) are still around), and I think this is a SUPER idea that I'm going to look into!

Great discussion here.

Donna G. said...

You know, respite, or being rested, seems like such a far off dream I can't even imagine it. "Letting go of duty" says it for me--just not having to put all the food in her mouth, or do all the bathroom duties.... But right now, things are so far gone I can't think of how to get there! What you said about the getting ready for your daughter to go to camp, and then dealing with the aftermath? So very true! And right now, I feel that same sense of being overwhelmed by the preparation when I'm thinking if something as simple as going out to dinner! Cleaning the house (hopeless), making something for her dinner that she will actually eat when it's reheated for her, coming up with some "activity" for her to do with whoever stays with her, etc--too much trouble! And since at the moment she has some rather unpleasant things to take care of at bedtime, I can't be gone then. Do I rush home, cutting off the "night out," or let her stay up late, and face the consequences the next day? As far as overnight--either of us away--not now. She wakes up screaming several times a night. Has to be dealt with, can't just ignore her. And since I don't know why she screams, or have any suggestions for what to do about it, I can't expect someone else to deal with it! (I do know that the pitch and intensity of the screams is startling. We had a video EEG done to see if it was seizure related. It's not, but the doctor said he hadn't seen anything like it. He said the techs who were monitoring our room had to turn the sound on the monitors off....) At any rate--it's so intense that even I feel like slapping her! I don't-- but I sure can't leave her with someone else, who is far less invested in her health and wellbeing than I am! My husband and I spell each other. We have no outside care at all. No sitters, etc. If we absolutely had to be gone at the same time, i would have to ask my sister to come, from 3 states away. So--long story short, right now respite would be to be rested enough that I could actually think about how we could get some regular respite! But it is so good to hear that not everyone feels like it's easy to go off and leave your kid in someone else's care!

Rose-Marie said...

Oh Donna, I'm so sorry you are having to deal with such a full plate. It's when we need a break most that it's the least possible to take one! That's pretty unfair irony, isn't it? Sounds like what you could use most is not time away, but some major relief for Abby. Then within her place of feeling more peaceful, you all could experience some rest.

I'm sorry she is going through such a tough time. That stress impacts your whole family (especially you!) so greatly. I wish I had a simple answer. But as you point out, it is so complicated to make things work so you can leave. Is it really worth it? I'm not sure it always is. Sounds like a mother's helper, someone to come in and carry out your routine while you hang out at home doing some of the other things you need to get done, might help reduce some stress. Just please don't worry about getting the house cleaned up for them!!!

TherExtras said...

Excellent topic and post, Rose-Marie! Looks like you struck a chord with several other parents. As I was reading your post I anticipated your defintion of respite: "getting to let go of the duty for a time." And your Hubby definitely gets the prize for figuring-out how to make that happen!

Barbara

Bobbi Sheahan said...

I love this!
Also, I second the motion for uninterrupted sleep.