May we no longer run away, but rush towards those who are diagnosed with dementia and their loved ones.
The story is common, someone, a friend or family member, is diagnosed with dementia but instead of the community rushing towards them, starting GoFund Me pages, and becoming advocates for dementia, they scatter, leaving the person with the diagnosis and their closest family alone, feeling another loss they can add to this journey. Why is this? I suspect that, unlike cancer, other illnesses and diagnoses, dementia has a terrifying stigma. We fear the journey, misunderstand the disease, research is confusing and at times conflicting. It causes us to come face to face with the mortality and fragility both of mind and body, forcing us to admit that our loved ones, and even ourselves, are mortal. For those of us who boldly face dementia, our mission is to provide the best care and life for those who live with the disease. This somedays can take all that we have in us, leaving little room for anything else, much less trying to build friendship and community. That is where those of us who are not currently caregivers or have a vocation to support those living with dementia can come and tap you out, if not in direct care, in education, and in advocacy. We can “hold the bucket” and allow you to do what you need to do in order to be your best self, in care and in life. We are here saying, “May we be a member of your community?”
Our job as individuals working with dementia and having lived through it in some form is to make ourselves known to speak up and let others know we are here. Let all of us, who have lived with dementia help bring back family, friendships, and community where we can, and be present in place of those whom you have left your side because of dementia. This journey may be about loss, but it can also be about growth. May the shared stories of dementia continue, and may we all create joyful connections where gaps are found.