Whenever strangers would see Tom in his USAF Veteran baseball cap, they would thank him for his service. He would always say, “Thank you, I would do it all over again,”. Even after the diagnosis, after knowing that his ALS was service-connected, he still said the same thing. His terminal disease didn’t change how he felt about serving his country. When he was completely paralyzed, using a hole in his throat and with the help of mechanical ventilation to breathe, he still said those words…I would do it all over again.
It has been 13 months since Tom died and those words play over and over in my head. I have been struggling with his loss, struggling to find my footing in this new world of mine, and struggling to understand the difference between what is my grieving and what is the toll that caregiving took on me. As I work through these things, Tom’s words are what I hear and wonder if I had to do it all over again would I.
Knowing what I know, would I be there for him in the same way? Knowing that there would be endless days and nights without sleep, would I do it all over again? Knowing that I would have to provide such intimate care that both of us actually hated that it was even required, would I do it all over again? Knowing I would have to standby helpless and watch him struggle through several bouts of pneumonia, kidney stones and even septic shock, would I do it over again? Knowing the toll it would take on me, would I do it all over again.
Caregiving for terminal patients, like the kind you do for someone you love, has consequences. You can’t get around it. When you put someone else’s needs above your own, there will be a price to pay. I would tell myself, he has a limited time, I can sleep when he is gone or he needs me now, I will deal with any medical issues later. I would think to myself late in the night as I watched him sleep, I can give all of myself to him now because he is in the fight of his life to just be with us a few more weeks, months, years.
When I was in the middle of caregiving, I would hear people tell me I needed respite or I was experiencing caregiver burnout, but on this side of the journey is it still respite I need or is it burnout I am feeling? I think there is a misconception of this side of the caregiver journey. That once you lose your person, you will grieve them and get the much needed sleep and just move on. I think it is easier said than done. I am dealing with the aftermath, the trauma of my caregiving to Tom. I am grieving him but it is complicated with the memories of watching him slowly die. It is complicated by the things I needed to do to him and for him to help him fight this disease.
So would I do it all over again??? Yes, without hesitation. Knowing what I know, I would push everyone out of the way to be his caregiver. Loving someone in the good times is easy. Loving someone when it gets brutally hard….well, that is true love, a love you feel within your soul. That is the kind of love Tom and I had. That is the kind of love that will see me through as I heal from his loss and make sense of the toll that caregiving took on me. It’s definitely not easy, but the one thing I have learned the past 7 years is I can do hard things and I would do it all over again for him.