I Wish I'd Had a Doula When My Mom Was Diagnosed With Dementia

When you know, you know, and we all knew.  All the signs were there and the observations we made were pointing to a diagnosis that we were anticipating and deeply dreading all at once; our mother had dementia. 

After months of confused conversations, a senseless car accident, and perplexing observations of strange events occurring one after another, my 3 siblings and I encouraged my mom to see her GP to get some answers about her health. He performed a cognitive memory test in the office on that dreary October day, and she didn't pass. She was devastated and in disbelief. Our suspicions were confirmed, but knowing only exasperated the heartbreak of realizing our mother was losing her memory and her mind. 

Dementia isn't something you imagine your 60 year old mother is going to be diagnosed with. My mother was vibrant, active, intelligent, and full of love. After raising 4 amazing children (I think I can say that), she went back to college to go after a career in social work; she was passionate about helping people who were suffering and marginalized. She had so much life left to live, but that wasn't her reality. At 59 she was diagnosed with Parkinson's, and at 62 she was diagnosed with Dementia. 

Myself and all of my siblings had very young families and busy lives. We each had 2-4 children and little means or resources to take care of my mom, who was alone and now incapable of supporting herself. We spent hours on conference calls  with one another, trying to hold it together and keep our spirits alive. We spent weeks that turned into months, discussing our options and trying to navigate the tangled healthcare system whose evasive nature left us feeling completely helpless. We had so many questions and so much pain, and we needed compassionate support to help us navigate this journey - we needed a doula. 

 We needed a guide to help us sift through the heaps of information. We felt like we were relying on a compass that pointed in every direction and we were desperate for someone to help us narrow in on the information needed for our unique situation. We could have used someone to empower us to bravely advocate for our mother to get the care she deserved when her situation was being dismissed and ignored. We needed a compassionate presence to call on; someone that would understand what we were going through and reassure us that we were not alone, that thousands of others were walking this difficult journey and coming out the other side.

We longed to hear that even though we felt as though we were letting our mother down by not caring for her ourselves, that we were not abandoning her, though a part of each of us felt that deeply. Our love for her was so great that we would have done anything to see her have the best care, which was something that we could not offer her ourselves. We just simply did not know how to find our way. 

Mom is now happily settled into a place that has become home to her, with caregivers that give her everything she needs, and a happy ending to a difficult road. We know the story doesn't always end this way. 

Life is never without difficulties and challenges. Through the mountains we climb and obstacles we face, we would all reap so much benefit from the support of someone that understands, empowers, and helps guide us along the way. I wish we'd had a compassionate guide to help us while we faced such intense grief, along with the seemingly insurmountable task of figuring out how to care for the woman who gave life to us, our precious mother.  I wish we'd had a doula; I'm so grateful we had each other.