I’ve talked about this with other caretaker’s in my group grief therapy and being a caretaker carries a lot of guilt. You never feel as if you are or have given enough, the things you do you feel don’t help as much as they should, and you’re always afraid of doing something wrong to upset or set back the patient. It’s a frustrating, agonizing, depressing, exhausting position.
When Kevin and I first heard the words cancer, not knowing what was ahead, my world fell apart. I no longer felt in the safe cacoon of his arms, but I knew that he needed to be in my safe cacoon instead. The roles reversed to him being my life caretaker, and for me to be his.
I cannot imagine what went through Kevin’s head as he processed what was happening to his body in such a short time…how he felt when he woke up and got off the ventilator to find he would never again eat the same way he had always known.
In just hours that surgery transformed our lives and what we had ahead of us. It was no longer just complications and cancer, it was a lifestyle that would never again be the same, even if he had survived longer. After spending 40+ days straight in the hospital, going home to be his sole caretaker was unbelievably scary. I still look back and cannot believe I did that, that I was able to remember everything that had been done to his ailing body, all the medications and treatments he needed, and much much more. I was given the memory of a superhero-it was definitely a God given gift for that moment in our lives, because now, I can’t remember crap!
Since Kevin has passed, my thoughts on caretaking don’t feel noble. Sometimes I think, I shouldn’t have blogged as much, I should’ve been talking to him more. I think, why did I get so short with him when things needed done? I think the shoulda woulda couldas sometimes, and it eats me alive.
Caretaker guilt is common and expected. I don’t know how someone can be a caretaker and not feel some guilt after such a huge loss. You go from being with someone 24 hours a day non stop, doing everything for them, little for yourself, and then…they’re gone. It’s another secondary loss.
Kevin was my reason to get up in the morning long before he got sick, long before I even met him. I prayed for him my whole life, for the true love, the soul mate, the fairytale story that didn’t get the fairytale ending. When he left, part of me died with him, and now waking up is….tough.
I would have cared for him until we were old and gray if he could still be with me. But after just four months of caring for him, I was exhausted. I’m still exhausted.
If you are a caretaker to someone, or you know a caretaker, please take the time to encourage them, to be with them, to try and understand what they have to do day in and day out to protect the ones they love. It is an often thankless job, so thank you. Thank you for taking the initiative to love without expectation. The love of a caretaker goes far beyond what anyone can imagine unless you’ve been there.
While I know I did all that I could, the what ifs still plague my mind often. Maybe someday Angiosarcoma can be treatable and give people time, love, and success so that those who care for Angiosarcoma patients and the patients themselves can actually enjoy life after the disease. This is my hope, this is my prayer, this is my goal.