I sat for the fifth day (and night) in the uncomfortable plastic chair, trying not to get in the way of the IV pole, monitoring equipment, and bedside tray. My son lay in a medicated stupor, mostly oblivious to his surroundings — the rhythmatic beeps, the footsteps in the corridor, and the grunts, groans, and snores of his roommate on the other side of the hospital curtain as the TV on the wall blared.
During the past several days, after the initial adrenaline rush of the trauma subsided, I lived for the few minutes of rest I’d get when the narcotics dose was administered and my son would again drift off in bliss. Inevitably though, someone would burst in. A visitor, an orderly for a vitals check, another intern or doctor... and I’d plaster on my positive smile once again.
My back ached and my sleep-deprived brain strained to keep me cognitive as various physicians explained the progress of their treatment plan and why they were placing new orders. I pulled out my notepad and tried to write legibly in it as I balanced it on my knees, so I could recall what they said when the nurse once again misread the instructions, or another doctor superseded the previous one’s directives. No rest for the weary.
If you have ever been a caregiver, you can probably relate. Like the mother of a newborn, you feel as if you have been pushed to the background. Everyone's attention is on the person lying in the bed, not you.
And yet so much rests on your wearied shoulders. You, keeping vigil at the bedside, matter — a lot! Nowadays, you have to be the advocate for your ill or injured loved one. In a matter of a few hours, you have to achieve a medical degree, learn new terms, and recall the names of body parts you once learned about in high school biology. It falls on you to make sure the doses are correctly administered, the patient has had a bath in the last three days, the meal meets dietary standards, and to play host to various well wishers who drop by but don’t know when to leave.
It may seem that nobody cares when you last slept or ate a full meal. You feel as if you are both vitally necessary and obviously irrelevant at the same time. It gets so very old and your nerves become frazzled, but you fight the guilt, telling yourself this can’t be about you right now.
Having spent many years by the bedside of a special needs child, I have learned three essential tips for caregiver survival. Perhaps they will help you endure the bedside drama as well.
1. You Are Only Human
The burden you feel is normal. The sense of being overwhelmed is as well. Do not be afraid to nicely tell the professionals when you do not understand what is happening. This is traumatic for you as well as the patient lying in the bed. No one likes to see someone they love in danger, in pain, or sick.
You must have a release valve for your emotions.
Even though you are needed at the bedside, you do not have to be there 24/7. I recall one wise nurse telling me, “You need to take care of you. When he leaves the hospital, your care really begins.”
You must have a release valve for your emotions at least once a day. Preferably, twice a day, every 12 hours. Let the nursing staff know you are taking a break. They will understand. They take breaks, too. It doesn’t mean you are a bad caregiver or are being selfish. Make sure they have your cell phone number so they can reach you if necessary.
Get off the hospital floor. Get a drink and a healthy meal from the cafeteria, along with fruit and snacks and water you can take back to the room. It is very important that you remain hydrated and have food every four to six hours to keep up your stamina.
Take a walk outside and breathe something besides recycled indoor air. Hearing the birds sing or feeling the sun on your shoulders can lift your mood. A bit of physical exercise will rejuvenate your body and mind. Knowing the world still exists outside of the clinically painted walls can boost your energy and calm your nerves. Go sit in your car and have a good cry. It’s OK. This is a stressful time and you deserve to have a meltdown.
2. Ask for Help
No one is meant to handle this all on their own. Swallow the pride, before you fall. If possible, ask someone else you trust to sit at your loved one’s bedside for a few hours every other day so you can take a nice long shower or bath, do your laundry, or even sleep uninterrupted.
Many big city hospitals provide accommodations for out of town families. Ask to speak to the social service coordinator about it. Most likely it is within a short walking distance and the staff can always reach you. If not, some nonprofit organizations and medical condition societies will help pay for hotel accommodations, especially ones who sponsor the care of cancer patients, trauma victims, and children with debilitating diseases. If your loved one was a victim of a crime or accidental injury, insurance carriers may help with the cost of your housing.
If you live nearby, and yet home seems like too long of a commute, don’t be afraid to reach out to coworkers, church members, or friends to set up a collection for you. Most people want to help out but do not know how, so placing a few dollars in the bucket makes them feel useful. In essence, you are doing them a favor by accepting their gift.
3. Go With It
The quicker you can adjust to this new reality, however long it lasts, the better off you will be. Hospital time is surreal. There is no day or night, only time periods between treatments, medicine doses, and vital sign checks. Allow yourself to tumble down the rabbit hole into their world and adjust to the new norm. Trying to keep some semblance of your normal schedule will feel like a salmon leaping upstream. You have enough to struggle with. If dinner is from 4:30 p.m. to 6:00 p.m., so be it. Get used to breakfast at 5:00 a.m. and lunch at 11:00 a.m. Otherwise, you will suffer something similar to jet lag as if you are bopping between time zones.
Hospital time is surreal.
Keep a diary, diligently logging things to ask the doctors when they do rounds, subjects to speak with nursing staff about, and to note patterns you detect in your loved one. That way, you won’t forget when they drop by and wake you up at 5:30 a.m.
Waiting is stressful, but it is a part of hospital life. Realize your loved one is not the only patient. Most hospitals are understaffed. By privacy acts, you are not privy to what is going on in the next room or on the next floor. If the doctor doesn’t come for five hours, there is a reason. If the call button goes unnoticed for five minutes, calmly walk to the nursing station and nicely ask for assistance. My mother used to say you can catch more flies with honey than vinegar. The kinder you are to the staff, the more service you will receive. Honor them in their job, even the janitor who picks up your trash. If you need to complain, go to the hospital advocate or nursing supervisor, but be firm, calm, and ready to provide specific examples.
Realize that this is all temporary. Even if what you face is your loved one’s long term illness or medical condition, it is not the rest of your life. Let other things go for a while, except of course paying your bills. Cancel obligations and social events. People will understand if you have to temporarily drop off a committee. See if you have any personal leave time at work and claim it. Talk to your supervisor about the possibility of working remotely. Do what you can to make your situation a bit easier.
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This article was written by: Julie CosgrovePhoto Credit: Direct Relief