Life has unexpected ups and downs. I think that this is something we all generally accept. My life has had a lot of these in the past decade. Most recently my mother suffered a massive right brain stroke that left her essentially paralyzed on the left side of her body. She is waiting for a bed in long-term care. She is 61. I am 27.
I wish someone had told me when my dad died of pneumonia, as a complication of a decade long battle with lymphocytic leukemia, a little over four years ago that I would worry every day about my mother.
I wish someone had told me that I would never really fully get over the loss of a one parent and that the fear of losing the other one would stay with me every day.
I wish someone had told me that when I called my mom that night four months ago not to hang up the phone to let her rest because she said she was tired and not feeling well.
I wish someone had told me that the first 24 hours after a stroke are the most imperative as they watch for swelling and bleeding in the brain. I wouldn’t have gone home to get some sleep.
I wish someone had told me that while you wait for her to get out of a surgery that is removing some of her skull, in order to relieve the pressure the brain swelling is putting on her respiratory system, that it would be the longest three hours of my life and no matter how hard I tried not to watch the clock I wouldn’t be able to stop.
I wish someone had told me that no, the hospital does not have to repatriate a patient to their local hospital — you just have to fight for your right to choose.
I wish someone had told me that the hardest thing I would ever have to do is remind my mother that my dad was dead when the stroke confused her and she wanted to know where he was.
I wish someone had told me to make sure I knew the most important things such as ‘Is your mom DNR? Does she have a living will? Does she have disability insurance? Has she assigned a Power of Attorney for personal property? How about for personal care? Do you know if she wants life sustaining measures?’ I could have told you her favorite color is blue, that she prefers Coca-Cola over Pepsi, that she hates shoveling snow but loves the way freshly fallen snow looks, and that she would prefer to eat a peanut butter sandwich over a gourmet meal, but I had no idea what her wishes were when the time came.
I wish someone had told me to remember to celebrate her little victories like relearning how to brush her teeth.
I wish that someone had told me that sorting through my parent’s house and getting rid of most of their possessions would be one of the most arduous things I have ever had to do.
I wish that someone had come right out and told me the hard truth: not every stroke victim is entitled to rehabilitation and you will have to fight tooth and nail to make sure they get it.
I wish someone had told me that the anger she directs at me isn’t how she really feels and that deep down she understands that I will always come back to the hospital the next day. Always. No matter what.
I wish someone had told me that I was wrong and the hardest thing I will ever have to do is tell my mom that she can never go home, that I can’t take care of her due to the extent of the care that she needs, that I have to admit her to long-term care, and that I can’t afford to pay for a private room for her.
I wish someone had told me that eventually you have to ask for help because in trying to do it all myself I would burn out.
I wish someone had told me that I would begin to feel jealousy, actual jealousy, when I saw other stroke patients stand up from their wheelchairs and take a few steps.
I wish someone had told me that even though I’ll never stop hoping for a miracle, deep down I know it isn’t going to happen.