Road towards a bright horizon

After six years of caring for my grandmother, and finally ready to tell my story, my Nonna has passed away. I started this blog to connect on a deeper level with those of you who are caregivers in the industry and also to share my experience with those who cannot imagine the challenges of caregiving. The struggles of a family caregiver are surreal in that the caregiver is both emotionally and physically involved with the loved one while attempting to stay afloat in the outside world.

Caregiving is not something one necessarily speaks about and sometimes one might not even admit that she has, in fact, become a caregiver. The unfortunate truth is that the people that once loved and cared for us will inevitably decline and need us to love and care for them. We need to make decisions, some of which are life altering or life threatening, on another life that we care so deeply about. Sounds simple, right? I mean we all know right from wrong. Wrong! When we are emotional, caught by surprise, multi-tasking, exhausted and then asked to make important decisions, we may choose the wrong path or simply be distracted from what needs to be done.

Over the last six years, Grandma went through so many ups and downs; from hospital visits, to rehabs, all types of therapy, dementia, to losing her best friend, her husband. We, as a family, stuck by her side always willing to do whatever it took to help but never realizing what she was going through since we couldn’t possibly experience her pain. To compound matters, after grandpa passed away, Grandma became mostly non-verbal so it was hard for her to communicate what she was feeling.

Six years ago Grandma was a hard working Italian woman; cooking, cleaning, and acting as an AMAZING caregiver to her kids (including myself). She never realized that she was the ultimate role model, teaching and touching so many people with her motherly ways.

Then, one morning while making the bed (because if the bed isn’t made then the room is a mess) BOOM!!! She fell. She was rushed to the emergency room with blood clots traveling to her lungs. Diagnosis: Pulmonary Embolism. The doctors did emergency surgery to save her life. She spent the next few months in a corner room in the ICU at St. Joseph’s Hospital in Paterson unresponsive and on a ventilator due to her collapsed lungs and kidney failure.

My family and I went every day to be by her side. We were convinced she was still thinking and hearing us as we noticed she would wiggle her toes in response to our questions. We all took various responsibilities whether it be to comfort her, tasks at home, doctors, finances and documenting each and every day and conversation. We focused on one organ at a time trying to juggle different parts of her body that were shutting down.

As she began to improve, the doctors told us that we needed to get her 100% off the vent so that they could pull it out and she could breathe on her own. So, we would “coach” and encourage her to breathe and breathe with her. But after two failed attempts the doctors began discussing a tracheotomy. We had no choice but to agree that if she failed one last time they would be forced to move forward with the procedure since they could not aggravate her esophagus any further. Grandma with a trach! Ughhhh. Well, they pulled out the tube one last time and miraculously she began to breathe. She had beat the odds, BUT at a grave expense. Grandma was changed forever.

I will continue the story in a few short weeks. While it is cathartic to me, I feel it is also important to tell the story, for if it helps one person to understand the challenges of caregiving or to recognize that it is truly a national epidemic it has been worth telling.

Thank you to all who have been following. I look forward to sharing.