Several of us have been visiting Bev over the recent weeks and wanted to share our observations with you. First of all, she’s such a trooper and continues to smile and be so gracious to see her friends! She remembers the stories that we share and we often bring photos for her to see of the times when she was not confined to her wheelchair. We understand from her care-team (who are AWESOME, by the way), that she continues to need round-the-clock care. She is struggling to eat because of the inability to control her swallowing and sometimes prefers not to eat. She has gates around her bed for safety and she is strapped into her wheelchair for protection. She has difficulty keeping her shoulders and head up, and sits hunched over. Her every need is cared for, from getting out of bed, washing, teeth brushing, eating, etc. She can no longer do any of these for herself. Her care-givers and friends and family hold her cup with a straw for her to sip. She still loves her hot coffee!
In early November, the family hired IU Palliative care to help with Bev. They will be there until the end. They have updated Bev’s medication to help keep her more calm. She’s a true fighter, and understands what is happening to her body, so, it’s understandable that she’s frustrated and angry sometimes. Those of us who know her best appreciate that about our dear Bev! But, she also needs to stay calm to remain physically safe.
It’s hard to watch our once vivacious and quick-witted friend Bev go through this. Many times, we have to hold back the tears before we can turn to her with our “game face”, smile and commence with our visits! As her friends, we band together to be strong for Bev and to help support her most noble cause, to find a cure for this terrible disease. A disease none of us were familiar with until Bev shared her journey with us.