Dawn is one of the most amazing women I have ever had the privilege to know. Many of us know Dawn the advocate for persons living with Ankylosing Spondylitis and the creator and moderator of #SpoonieChat on Twitter.  But she is also Dawn the caregiver. Dawn has been a major support for me while my husband has been going through end stage liver disease and a transplant. Dawn cared for her mother, who died several years ago, and she cares for older members of her family now, including her uncle, affectionately known as The Dude. 

The Dude is the brother of Dawn’s grandmother. At 89 years old, he is a decorated United States Navy Veteran and a retired Federal worker. He has also been suffering from dementia for several years. 

For the past past three years, Dawn has been caring for The Dude full time, on top of working and her advocacy. Two years ago she became his legal guardian to ensure he was receiving the best care possible, first at home, then in a memory facility. 

Not long ago, Dawn had to make the agonizing decision to put her uncle into hospice, where he passed away on August 8th. 

Dawn missed about six weeks of work managing the details of The Dude's end of life care and coordinating family communication. 

Dawn's time as a guardian of an adult was literally an unpaid full time job dealing with Social Security, the VA, disability claims, banks, lawyers, state government, and medical facilities and providers. Dawn has had to stop working to ensure the proper coordination of all of all of these entities, and to make sure The Dude receives the level of care he needs and deserves. Her administrative work continues through the end of this year as she satisfies her court ordered responsibilities. 

Dawn has done so much for the spoonie and patient advocacy community, and we can repay her now by assisting her transition out of caregiving.