Take a Peek at Caregiver Loneliness
ICU minutes stretch like bubblegum—at some point, I know they’ll burst and slap more messiness into my life. I wait, lonely in the busiest place on the planet, for the nurses to allow me back into Pedro’s room. The tubes cascade out of his mouth, bringing life and hope that I won’t have to face the future alone.
Hospital minutes twang with anxiety—Pedro’s not in ICU any more, but nurses rush in on quiet feet each time I press the call button. Days have passed since he knew that I sit next to him, counting each breath and movement—hoping that this crisis will pass. The beeps of his vitals accompany my prayers. The loneliness presses in—squeezing hope into the corners.
I am on a highway, looking towards a bright future, yet time whizzes past me in a blur. I tend to Pedro’s needs during my lunch break, than hurry back to work. The four of us (Pedro, Laura, Sarah and I) relish his recovery, and long for time to regain its measured pace. Normalcy dances within reach, yet I feel lonelier than when minutes stretched like bubblegum.
The bills, the burdens, the new normal, all build an invisible wall between me and everyone else. No one understands the sheer panic a sneeze or a sniffle produces in my mind. No one understands the confusion of no longer living in panic mode.
I blindly hang on to the one constant from my journey. I know I have never been alone. Never been forsaken. But MY road to recovery is a lonely one. #caregiver Click To Tweet
Lessons Learned in Retrospect
Fifteen years have passed since Pedro’s stem-cell transplant saved his life. For him, recovery lasted about a year. For me? A lot longer. Cancer and other catastropic illnesses can act as blinders for the caregiver. We hyper-focus on the tasks at hand: taking care of our loved one, finding answers, and willing them to live. We forget that the world continues while we fight an isolated battle.
In retrospect, I would have done things a bit differently.
1). I would have found a support group for cancer caregivers.
I don’t know if they didn’t exist at the time of Pedro’s illness, or if I just didn’t see signs offering help. A few years after his recovery, I went to the same hospital and noticed posters all over the place for caregiver support groups. It would have been helpful to know that I wasn’t the only one having all the feelings that accompany caregiving.
2). I would have taken more interest in my friends.
Pedro’s illness took place before the advent Facebook and Instagram, so keeping in touch with friends meant phoning or writing letters. Nowadays, constant communication takes very little time and effort. You can take an interest in other people’s lives while you wait.
3) Make an effort to keep in touch with friends and family on a regular basis about non-caregiver related things.
This seems counterintuitive, because your world seems consumed by caregiving matters. But if you come out of the bubble, you’ll find connection with others that will help you when the crisis has ended and you return to normal life.
4) Don’t be afraid to ask for prayer for yourself.
I had no problems asking for prayer for Pedro and his specific needs. I had no idea that I could ask for prayer for myself. You can ask to join our Blessed (but Stressed) group of caregivers on Facebook. We pray for each other every Wednesday.
5) Acknowledge that YOU need time to recover, too.
Hopefully, if you take care of yourself during your journey (I didn’t), you’ll find that recovery takes less time. By staying connected with friends and family about non-caregiver related things, you won’t feel so isolated when your caregiving duties have ended. You’ll find it easier to resume activities that feel ‘normal’ to you, thus decreasing your sense of isolation and loneliness.
Know a Caregiver?
Do you know a caregiver? Have you wondered if he or she might might suffer from caregiver loneliness? What can YOU do to help? Don’t feel rejected if your caregiver friend seems distant and unresponsive. Keep reaching out! Caregivers suffer from loneliness but often don’t know how to express their feelings. They need YOU!