This year has been a combination of both! Corey and I are living with some challenging setbacks; yet, we are making some very good progress.
Since last year’s hospital stay, Corey’s new medication has helped the convulsive seizures; however, with the good comes some bad. The medication has contributed to some additional cognitive issues. Truthfully, we don’t know if it’s side effects of the medication or if it’s aging brain from her severe TBI injury. Her processing, word retrieval, and diminished short term memory (from baseline) have all been affected. We’ve noticed subtle nuances that have consistently presented themselves over the last year. Those side effects have also contributed to heightened anxiety levels. For those of you following us over the last fourteen years, you are probably guessing that Corinne has resurfaced. For those of you new to our updates; Corinne is Corey’s alter ego (think Dr. Jekyll and Mr. Hyde). Rest assured; Corinne is still a handful!!
Corey’s anxiety is justified. Imagine not having a sense of time: minute, hour, day, month or year. It’s got to be unsettling to feel like you’re in a blank space with no concept of what’s presently happening or of what’s coming next. I’ve also noticed an emotional awareness; she is sad that she can’t remember. Another new struggle is remembering our long-term nurses. Imagine having “someone new” coming to your home or helping you with your most intimate daily tasks like dressing or toileting. Corinne frequently asks, ‘Why do we have to have these random people in our house’?! Our team has been with us for several years and fortunately they roll with the ups and downs. Additionally, it’s been an adjustment to deflect and answer repetitive questions, as well as the emotional temperament swings. But then, the pendulum swings back and Corey’s aware and in the present moment, conversing with clarity. Fortunately, the most important personality trait that hasn’t changed is her humor and dry wit. That is still intact, especially when she wants to tease me!
As a caregiver, I continue to learn and RE-learn strategies to juggle and navigate our days. Each year Corey changes and so does my role. My tasks still include managing and training our nurses, finding specialized care and doctors for her physical issues, dealing with insurance claims and continued advocacy for PT, OT, and speech therapies. When Insurance runs out, WE are doing daily PT, OT and speech at home.
As a mom, these years have been emotionally tough. Ambiguous grief is not a topic that most counselors understand and not the most comfortable topic of conversation with friends. I will admit, I have accepted more than one invitation to a personal pity party! It’s difficult to watch Corey frustrated and struggling with the tough questions she wants answers to. It’s even more difficult to try to help her work through them with her processing and memory deficits. She wants her independence but because of her memory loss, she doesn’t understand why it’s taking so long or when will it get better? She’s feeling her loss of freedom. Full transparency I, too, have been feeling the same for myself ~ Caregiver burnout is real.
I have been asked frequently, how do we do what we do every single day? I can honestly say, I’ve made progress with this and it’s not easy! It is a daily mental and physical workout to create opportunities to heal and stay positive. When Corey gets frustrated and upset because she doesn’t remember her progress, some of my tricks include pulling up our first YouTube videos so she can see her ‘early’ self. Since her fall in 2023, I have been tracking her PT progress. I created an excel spreadsheet, (with a graph) showing her the incremental increases in her distance, stamina and strength. When the timeline list doesn’t register, we create a gratitude list for what we can do TODAY. This mental and emotional exercise always leads to renewed perspective and motivation to look at the positive. We carry that over by going out in the community to truly live enriched experiences.
Helping Corinne of the ledge to find Corey helps me, too. I am forced to look at the positive as well. Every day I take time to focus on my gratitude list. I think of all the people in my life that give me strength through their friendship, love and support. I picture each of their faces and it brings me out of the hard and lonely moments.
14 years – 5,115 days…We are here because it is actually one day at a time making progress on our mantra, Never Give Up and Never Give In, xoxo