Balancing caregiving and relationships and avoiding burnout | Elena Pauly

Posted by Reeve Staff in WAGs of SCI on May 23, 2019 # Caregiving, WAGs of SCI, Relationships

A few lessons I’ve learned after my boyfriend sustained a high-grade spinal cord injury, fracturing his C3-C5 vertebra, three years ago.

I’ve heard this quote many times; “the key to happiness is balance”. I can’t say it always happens the way we plan, especially after an unpredictable and sporadic injury such as a spinal cord injury. Most days in fact, it looks more like a circus act, juggling while holding the ring of fire and balancing on a circus ball. “Bring out the lions!”, you shout.

In all seriousness, life is unpredictable and let’s face it, we are creatures of habit. So, what happens to the brain and body when we are thrown for a loop? Okay, multiple loops. Well, I guess it sort of feels like something from out The Matrix, “Where in the devil am I and what IS my name?” You just kind of figure it all out as you go.

Balancing caregiving of another individual, along with your own personal care and well being is most certainly a learned skill. In fact, I don’t think I can ever say that I’ve ever mastered it. I remember while my boyfriend, Dan, was still in the rehabilitation unit at G.F. Strong, here in Vancouver, there were many days that I would wake up and rush off to the store to get him the things that the unit didn’t provide, ie. edible meals. In the evenings and after I left his side, I would go grocery shopping and prep meals for him to bring in the morning. I would wonder if he had his favorite body washes, lotions and potions, the right pillow, duvet, pajamas? The never-ending lists would play themselves like a record. Then, I remember standing in the shower one morning and looking down at my fur leggings. “What in God’s name was I doing or not doing for myself?” I thought. Weeks after weeks and months had gone by before I realized that I wasn’t giving anything to myself. Not even shaving my own legs. In retrospect, I now realize that self-care was the very least of my worries. I felt selfish and bad for considering my own physical and mental well-being. I thought it was trivial and it didn’t matter. In fact, I was more concerned about how I was physically going to detach myself from Dan and actually leave the hospital while still maintaining my sanity. While yes, his comfort was of at most importance- coming to a realization that “he will be completely fine without you” is what really drove it home for me.

So, how do you do this? Practice. Lots and lots of practice.

Practicing leaving the hospital and recovery centers on your own. Even if it’s just to walk outside the hospital room to take a lap around the floor. Then, maybe next time practice leaving the building and then going to a store on your own. Being away from your partner can feel alien, especially if you have been living together before the accident. It may feel selfish to go for a coffee with friends or family, while knowing that your partner is in a hospital bed but, trust me- it really, really helps. Practice being alone. Being alone with your thoughts and emotions can be extremely difficult. So, start practicing doing the hard and dirty emotion, self-care work ASAP. You’ll be doing yourself the favor, I promise.

Find your space. I spent many days, sitting on my patio in silence with a cup of tea. After a few weeks of practically living in the hospital beside my boyfriend, I began to realize that he wasn’t going anywhere and that I didn’t need to rush off to be with him right away. Taking the time to nourish myself began to sink in. This quote, “you can’t pour from an empty cup”, is truer than you know. In amongst my boyfriend’s injury, we were packing up and selling his home, my mum was frequenting the emergency room for her lengthy battle with Parkinson’s and I was at the forefront of everybody’s care. Everybody’s but mine. There were days that my cup was drier than the Sahara Desert. I remember going to the store one evening and as I approached the counter to pay for my groceries, I picked up a bouquet of flowers. When I came back home, (where I was currently staying) I laid the flowers on the counter for a while and walked past them to realize I was flooded with deep and heavy emotion. It only then dawned on me, that for a while I may have to buy myself flowers, something that Dan did monthly. I realized that for a while, I would have to do a lot of things on my own. I quickly adopted the quote, “Put your hair up in a bun, turn on some gangster rap and handle it.” I began to look at being alone, less as being “lonely” and more of getting to know myself all over again. Reinventing your identity, so to speak. I don’t think we truly know what we are capable of doing until we are placed in challenging and character-building situations. So, just “handle it” and you may even surprise yourself of how strong you truly are.

Ask for help. Yup, I know this is a BIG one. Asking for help after I just told you to find your space probably seems a tad contradictory. But again, it’s the balance between knowing when to ask for help and when you need to be alone. The tricky part is... asking for help before you begin to see the signs of burnout. You know- before you catch on fire and completely combust.

Now, who do you ask? Besides the nurses or hiring help... well, you can also ask the people you love. The ones who have been there for you from the get-go; your friends and family. I speak directly from experience when I say, don’t wait until your entire world is falling apart, and your crying on the bathroom floor because you are utterly exhausted. Just ASK. And sometimes, when you are not “one of the trees in the forest”, it’s really hard to see inside the forest. People want to help, most of the time they just don’t know how or want to overstep boundaries. Ask them to take your partner out for a lunch or walk in the park or a day trip. This is what family is for and most of the time they would be delighted to know that they can contribute in some way.

Be patient. Realize that even Rome wasn’t built in one day. This is also very tricky, especially if you are a “go-getter” or a “doer” or super impatient like me. I have always been a fixer. Growing up in a very feminist and female only household, I was always the one to “fix” things. Fixing, repairing household items as well as relationships was something I felt naturally guided to. Not being able to fix my boyfriend’s broken spine took a very long time to come to terms with. Honestly, I thought he would get up and start walking within a month after his SCI, while we were having the time of our lives vacationing in Cuba. Yup, I thought his C3-C5 high-grade injury, would miraculously heal itself. The facts were the facts and having to swallow that pill was hard. It was also hard coming to terms that our life would be very different moving forward. After the first week of him being hospitalized, we began having the conversation to sell our townhome. I worried that if I said that he was a “quadriplegic” aloud, that it would become true. I think we all sort of go through those motions. All it did was prepare us for a life of reality and allowed us to begin our healing process.

Set yourself up for success. This is the best thing you can do for everyone involved. Get organized, and have all of the supplies, equipment, and space set up for a wheelchair user to be in. This can look very different for all of us depending on MANY different variables and access. But if I can tell you one thing it would be to get organized. Organize your drawers with supplies that are easy to grab at any given part of the day or night. This also helps when you turn into a night-walking zombie, you will know where everything is.

Spend time with YOUR friends and family. You will quickly know who these people are and are not. There will be many who stay and some who will go. I’ve recently written a post on this topic, “Letting go of relationships that no longer serve you after SCI”. Why? Because everyone should know that it’s totally okay to close some doors. Know that everyone comes into your life for a reason; to teach you a lesson. When they leave, that is the lesson. So, celebrate these moments by spending time with people who make you feel GOOD, whole, nourished, loved, seen and heard. This life teaches us that not all who enter our lives will stay, and that’s totally okay. The faster you close the door, the quicker ten more will open.

And lastly, CELEBRATE!

Celebrate the fact that your partner got a second chance at life. The days you have now, are a gift. Sure, there are many challenges but realize that you were spared from having to visit him at a graveyard. Each day is truly a blessing. So, if one day you feel off and want to stay in bed all day; do it. If another day, you/they feel well enough to do something exciting and fun or leave the house; do it. This is a time to listen to your voice, so truly listen. Celebrate life and all it has in store for what is ahead for you two, because these are the milestones that take us from day to day.

Elena Pauly

WAGS of SCI