Life after Glenn’s stroke was something that I could never have imagined. I have struggled in ways that I could never have imagined. There are days that I am still at a loss and question my ability to navigate this storm any more. You might be thinking “but you have a website and blog dedicated to helping caregivers!” Yes I do, and one thing I hope to impart from this site is knowing that there is no straight path forward. Life after a stroke can be quite harsh for many caregivers. Not all days will be horrible, not all days will be great rather life will most likely fluctuate between the two for the majority of caregivers no matter how grounded or organized the caregiver is.
Everyone’s experience is going to be different because every stroke is different. How your relationship is will largely depend on what it was before the stroke, severity of the stroke, severity of the damage after the stroke, and how the caregiver responds to challenges. So there is no blueprint on how to navigate the storm since each storm is a different experience.
Letting go of the past: Letting go of the past involves processing emotions of grief, guilt, and relief and understanding that all feelings are normal. It also means moving forward while honoring the caregiving experience, whether that’s after a loved one’s passing or simply shifting into a new phase of life. Focusing on self-care, seeking support, and redefining purpose can help ease the transition. The main goal is to find a way to move forward within the confines of the situation. I am constantly repeating to myself that “life is not a grant-wishing factory” (a quote from John Green’s novel, “The Fault in Our Stars”– as a side not I highly recommend this book).
What is the relationship like? For us it is completely different since Glenn’s stroke. In the begining Glenn was aware of my presence but little more. It was hard to know what was going on in his head if anything. In the Hospital I was his vigil sitter. At the rehab I was his companion and his connection to some sort of undefined reality. Once at home I was his everything as he was unable to do most tasks by himself. For me, I slowly began to feel less like a wife and increasingly became just a caregiver who took care of a sexual need every now and then. I had to force myself to remember to give hugs and accept from that hug as much as a I could. Sometimes weeks would go by and I would have to force myself to stop and empathize and reach out to give him a hug, to let him know that I loved him and that I was there for him 100%
Fast forward 3 years and there are days he is very angry with me and there is little way for us to communicate this anger due to his aphasia. I try my best to explain why things are the way they are but he either does not or cannot care. All I can do after trying is move on, for what other choice is there? There are many days I have to tell myself “it is what it is” and leave it at that. I can’t change the past and who knows what the future will bring so I try to ground myself in the present.
For others who are lucky enough to be able to communicate with their loved one a dialogue can be shared where you both can work to understand the others anger and frustration with the situation, but for some caregivers who’s loved ones have extensive cognitive disabilities that dialogue is not necessarily a two way street and their loved one cannot comprehend what is being shared. In that situation all the caregiver can do is hope the message eventually gets received and until that point work withing the limits of the situation.
