It only seemed fitting that my first non-biography based blog post would be about self-care for the caregiver. This Blog is a way I am taking care of myself. By putting my thoughts to paper maybe I am clearing my mind of some long overdue clutter that I’ve been holding onto, or maybe the clicking of keyes is in itself a therapy like popping bubble wrap? All I know is that my dogs are very perturbed that my lap is now occupied by a laptop and not by them
Since Hannahs birth, our life has been a whirlwind of activity. Constant doctors appointments and therapies, as well as just her day to day care have us running almost non-stop. All this activity can be a lot for people. A phrase I’ll always hate is “I couldn’t do what you do” and my response is always “Yes, you can because you would need to!” When our special kids come into the world they aren’t asking us to be all the things we have to be for them (and this goes for any parent really) It’s our duty as parents to give of ourselves to make sure we take care of the ones we love most dearly. I would move a mountain shovel by shovel for Hannah…because it is just what we do. Yes, being a parent is often a thankless job, Hannah is non-verbal she can’t even tell us “Thank you” or “I love you” to show her appreciation for the sacrifices we make for her. But we know in other ways that she does. But through all this activity, the daily routine, the ins and outs, and the stresses and anxieties…you can burn out.
I have lost count of the amount of discussions my wife and I have had about our own burn out. When you as a parent are giving so selflessly to a child it’s hard sometimes to communicate your own needs. They seem selfish, they seem non important in the grand scheme. Its lead to many long tearful nights about “I need more help” or “I’ve been going non stop for two months”
As the de facto primary breadwinner for the family, my wife became Hannah’s full time caregiver and stay at home mom. This is important for the life of a caregiver because this sacrifice in itself is very difficult. Shelly had worked so hard to get an advanced degree in something she loved…and I think down inside still loves, though she will tell you as a teacher looking back, she prefers dealing with her own kids rather than other people’s children. But an important thing is in doing that she lost a bit of her sense of self. What was her purpose? She feels more like a nurse than a mom. Her entire world has become hannahs routine. My wife is an organizational mastermind. She has a cubby labeled for everything, has a shelf marked where a book goes.Shelly has binders,books, and calendars all up to date and ready for Hannahs every day, maybe not because she enjoys doing that but because there is so much to keep track of. So with all this every breath every day is focused on caregiving. But not on self-care. I got off easy in that I go to work for many hours a day. I deal with the work environment and job stress, then come home and help however I can. I cook, I clean, I help with hannahs care, whether it’s changing her tracheostomy, or her G-tube button, or giving her a bath and changing a soiled diaper. We are a team, as soon as I set foot home.
It works….it has to work, for Hannah’s sake.
But what about us? We burn different candles, but we still burn it from both ends for both of us. You know those days you get home from work after dealing with something incredibly difficult…where you just want to put your feet up and have a drink. Well, that is not always in the cards as a special needs parent. And my wife has difficult days with Hannah where I get home and she just wants to do anything but be cooped up in the house for another minute “I need to go to target” and i’m left thinking “Great, I’m going to get a call from the police that she’s being taken to a mental health facility after taking up refuge in the camping department and making a pillow fort from homewares and smores from the grocery aisle.”
After our uncounted amount of time we both realized that we need time for ourselves too. One of my favorite phrases my work colleagues often say is that “You cannot give from an empty cup, you must fill your cup first before you can give to others” it’s that classic airline stewardess mantra of putting your own face mask on before helping your child. I don’t know who needs to hear this, but IT’S. ALL. TRUE. Self care is important even when you are moving a million miles an hour in a million different directions.
At times this is unavoidable. We have experienced and seen other parents go through long hospital visits. You’re not running off to the mall while your kid is in intensive care. That’s just not happening. But when we can, we go out of our way to make time. For my wife, we have always enjoyed the beach. I joke that she’s like Superwoman and she’s powered by the Sun. Shelly hates cloudy days, and sending her to the beach (which is where she is as I type this) is the most simple form of her self care. She walks down to the water. Gathers shells and glass, walks for miles. Maybe she sits there and has a moment. Cries a bit. Lets it all out in a way she doesnt want to in front of myself or Hannah. It’s her time, it fills her cup.
For me I have a few things I do for self care. I took up a hobby of homebrewing beer, cider, and mead. This was to keep me close to the house (An 8 hour trip the golf course doesn’t sound very special needs friendly) and is something I enjoy studying, reading, and tinkering with. Many of my friends who are probably reading this blog,I have made in my beer travels. I am a very social person, and am somewhat of an extrovert. I gain energy from entertaining and caring for people. It’s why I work in the service industry. I just want people to be well fed with good drinks in hand. It brings me a sense of fulfillment. So my hobby in crafting beer has brought that to me. Has given me a community of people to reach out to. I can’t tell you the amount of support my friends have given me over the years.
Finding a support group. For Ed, Phil, Joe, Chris, Dan, Harody, Casey, and any of our HoPE DADS reading this. You are my daily rock. These guys walk the same life as me, maybe in slightly different ways, but we stare down the same highway of life every day with our kids. Families for HoPE provided myself and Shelly this outlet. Not just in the care of our daughter, but because being a special needs parent is very isolating. Your “normal” friends with “Typical” kids just won’t or can’t understand, and as hard as they try to be inclusive, they really have no clue what our life is like. For all things that social media is, the best of things is a network of people that you can search and find people who may be in a very similar situation to you. Families for HoPE is just that. It is families living with HPE and its many variants. We get together for conferences, arrange retreat weekends with both moms and dads groups, and provide support for one another. During Hannah’s last hospital stay I can’t tell you how many times I talked to Ed, Phil or Jason, just bouncing situations off them or getting my head straight. It’s important that you find that group. You don’t have to be alienated…reach out.
And that brings me to my last point in selfcare. TAKE CARE OF YOUR RELATIONSHIP. My wife Shelly is my partner and my love first and foremost. That deserves as much care and attention as Hannah does. We learned this lesson just very recently in how far we alienated each other, even in our very own home. It was because we were not making time for each other. A marriage needs communication to survive, it needs nurturing. Taking time outs to go on a date or have fun as a couple is sometimes all but impossible for special needs parents. We can’t just hire any babysitter in the neighborhood. It requires planning and a lot of luck. If Hannah is having a bad night we aren’t going out. The blessing in disguise came in the form of our in home nursing that we were approved for after Hannah came home with the ventilator. We have staffed an overnight nurse, and this gave us a bit of freedom to enjoy our evenings as a couple.Sometimes we do important things like pay bills, or plan out doctors visits etc. but for a lot of the time we have taken to going on our patio and having a drink while listening to music. Or watch a show together just holding hands.
I’ll have to take my own advice on this, tell your partner what you need. It’s easy to fall into the trap of not communicating needs because they seem selfish in the moment. What makes you more tired than your spouse? Or why do you need to hang out with your friends instead of your wife? Well, sometimes we need those things, but unless we say them, we don’t do them. If you have a need as a special needs parent there is no shame in asking for help to meet that need. Don’t feel bad asking your Mother-in-law to come watch your kid so you can go to the beach, or the store for a few hours.
You can’t pour from an empty cup, and if your cup is drained, you can’t help your child. Find what fills your cup. Whatever nurtures you, whatever brings you a bit of joy, you have permission to be a human being as well as that caregiver. You are a husband, a wife, a spouse, a friend, a mother, a father, and that caregiver. Take care of all those things. You owe it to yourself.