When someone in your life is ill or has a disability, everyday events often become all day events. A simple thing like going out to dinner becomes a marathon if you have not scouted out all the places with ramps rather than stairs. A fall of any kind causes greater anxiety. An unanswered call triples your heart rate. Are they unconscious? Are they in pain? Did I miss a call? Over time, the number of emergencies in your life is so large, it is hard to differentiate between a real emergency and something requiring less urgency.
I discovered that my bosses at work, colleagues, and my friends became so immune to my excuse, "my sister is in the hospital" that they equated the occurrence with everyday life for me. Over the last few years, when Ann's illnesses started to snowball and her health warranted greater and greater concern, the people around me found my lack of my usual attentiveness to be a mystery. "Why didn't I hear from you?" they said. When I replied with the standard, often heard, "my sister was in the hospital," they were confused. "Oh? Well, I thought you were just taking her for a test or to the doctor or something."
It is difficult for the able to understand the lives of the disabled. I absolutely get it. For my sister, she was seen as the woman who cried wolf and I, as an extension of her, also received the reaction of being someone who always shouted out with an ailment. Then, when nothing noticeably changed to those outside of the situation, they assumed there was no real urgency. No emergency. We were just using minor things as excuses or we were people who catastrophized everything or we were seeking attention. The sky was falling, but it never seemed to fall.
As a caregiver, this reaction from friends and co-workers made me wonder if I knew the difference between what is urgent and what is not urgent. Did I make everything into an emergency? My heart certainly quickened whenever I received a call from my nephew, Josh, my sister's primary, live-in caregiver for most of the last 15 years. Josh seldom called to say, "Hi, how's it going?" He tended to call when something was happening with my sister. Her pic line does not look normal today and she refuses to call the doctor. Or, her oxygen tubing has a kink in it and we are not sure if she is getting enough oxygen. Those circumstances seem to be emergencies to me.
How do those incidents compare to a call saying, "I found her and it seemed like she wasn't breathing. I turned her on her side and it got better, but I called 911." For that kind of call, I would always promise to meet them at the hospital. I would run from work and cancel my day for those kinds of calls. They all blur together and neither Josh nor I can remember which year she started using the oxygen around the clock. And when the electricity goes out and she only has 45 minutes left on her portable oxygen machine, that is an emergency! Right?
Was it last year or two years ago when she was in the hospital for 39 days? Oh, that was last year? Oh, yeah. What year was it when she had that pic line for antibiotics because her osteomyelitis infection was back with a vengeance? We can't remember. And so, it becomes difficult to differentiate for the caregivers. The phrase, "My sister almost died this time," quickly replaced the usual, "My sister was in the hospital." But, not everyone believed me.
There is a kind of grief that caregivers feel when others around them express that doubt. Even when the doubt comes with kindness and genuine concern, "Oh, I'm so sorry. I just thought she was in the hospital again. I didn't realize it was so serious." How many times can someone almost die? When you have been ill most of your life, many, many times. A plethora of times. A shit ton of times! And each one of those times carries the same amount of fear, grief, anxiety for the caregivers and loved ones as any of the times.
I can't imagine how it felt to be my sister! The person who was, you know, actually almost dying most of the time. We embraced Monty Python's, "Well, I'm not quite dead. Actually, I feel much better."
Since Ann passed away, I wonder - out loud to other family members and friends - what will it be like to not have emergencies all the time? We do not know. We cannot imagine it.
Σχόλια