If you’ve been following me or talking to me lately you may know that I recently finished my training to become a Death Doula or more gently called an End-Of-Life Doula. Most of you are probably wondering what it is, why I’m doing it and if I’m crazy! hahahaha
First, yes I probably am a bit crazy. But this is what I know how to do. This is the only work I truly know how to do. This is the service I can provide to people because I know it. I’ve done it. I’ve lived it and I’ve come out on the other side. I believe that having a Doula would have been so beneficial to Duane and I, and our families. Hospice was amazing, but Hospice is overloaded, they have so many patients they can’t spend an extended amount of time with any of them. They are running from patient to patient, often times putting off certain patients to run to the more critical ones.
I have been trying to figure out how to help in a way that makes sense to me. I have always said I never wanted anyone to feel the way I did. So I started working with caregivers. I started the Young Spouse Caregivers Alliance. I answered calls and emails, I talked to crying caregivers, dealing with their spouses impending death, talked them through family problems, caregiving problems and really just listened to them cry and vent and offered anything I could. I LOVE doing that. I love being the person I wish I had.
One main thing was missing from all those conversations, the elephant in the room. Death. No one asked me about death. We all knew it was coming, and coming soon. But we didn’t discuss it. It was avoided, always. I was willing to share and talk about it, I really am an open book. I think when you are so deep in the caregiving process all you can do is focus on the now. The now takes all your energy, plus some. The now is so intense you can’t let your mind wander to what will happen next. For survival purposes.
I have always been willing to share about my experiences, caregiving and death. I was Widow of the Week last year over at the Hot Young Widow Club. I shared our story and pictures of the good, bad and ugly. I still get at least one message a week from someone who randomly found me on there and wants to talk about death, ALS or caregiving. They message for guidance and mostly for me to confirm what their doctors already have … that they don’t have ALS.
People are obsessed with death – obsessed with avoiding it at all costs! We eat healthy, exercise and try to get enough sleep. Unfortunately those things are not always enough. People die, healthy people get terminal disease and die.
I struggled with how to help people at the final juncture of their caregiving journey. How do I help them and their person transition in mindset? How do I help people accept that death is going to happen, sooner than they originally planned, but that you can still have a good life? How do I help at this level?
I googled and googled and saw so many people suffering at the end of life. Caregivers and families and the patients themselves. They struggled with giving up, conceding to death and still living the best life possible. There are no guide books, no one wants to talk about it. I remember sitting on the couch late at night trying to figure out how to keep Duane loving his life, living the best life he could, managing his pain, trying to ignore the disease progression all while knowing he was dying. I remember being scared and feeling so alone. I hate that there are other people feeling like that. I have to help them.
So for right now this is part of my journey. I don’t know how long it will last, or what direction I will ultimately to go in, but for now I’m here to help in caregiving and death. Reach out if you have questions.
– xoxo Victoria
P.S. Tomorrow I will go into detail about what a Death Doula does and how I plan to tailor my business to fill a need.