Susan's Last Request: A Bed of Comfort

My sister, Susan Backer, was diagnosed with ALS (Lou Gehrig’s disease) in March of 2022. Her symptoms started in the summer of 2021. Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, is 100% fatal. ALS is a motor neuron disease that causes nerve cells in the brain and spinal cord to degenerate over time. This leads to a loss of muscle control and the ability to move, speak, eat, and breathe.

My sister’s started with limb onset, which means she can still eat and talk but has lost total use of most of her lower body and hands. It is now affecting her upper body and diaphragm, which expels the carbon dioxide from her body. She is totally dependent on her husband and myself as her daily caregivers, along with her three grown children and friends and family when we have other obligations. Through this journey, she has not asked for any help and will suffer in silence for as long as she can stand it before she will even ask us to help her. Knowing her prognosis and the burden to her family, husband, three children, and seven grandchildren, she has decided that she will not go on a feeding tube or ventilator to prolong her life and has chosen quality over quantity. We respect her decision! She is getting assistance from hospice for end-of-life comforts, but despite all their help, she hurts!

She has one wish and that is for a comfortable bed that she can control when and how she needs to move her body for comfort and relief from the pain of her disease! The bed recommended by ALS patients who were able to get one is called the Freedom Bed by Pro-Bed. It is made especially for those who are immobile, but it comes with a high cost, $30,000! This is beyond what her family can afford and is not covered by her medical care insurance. They say many hands make light work! Please consider a small contribution to help bring her the comfort and independence she desires in her final days by donating to help with the cost of this special bed!

Sue has been a help to so many over the years, volunteering as a first responder, and as a volunteer at school, in her community, and her church, as well as assisting others in need! Please help grant her only request and that is to have a comfortable end with dignity! I know she would be very grateful along with her family.