Please help continue in-home services for Ed Reed

Hello! My name is Diane Reed. I’ve been Ed Reed’s partner/spouse for 55 years. Ed is a jazz singer, addiction educator and counselor who has an amazing story.

Many of you know Ed as a critically-acclaimed jazz vocalist and recording artist who began a long-delayed professional music career when he was 77. Since then he has performed on world-class stages and was voted #1 Rising Star male vocalist at age 85 by DownBeat magazine jazz critics. His late-life career was delayed in large part due to a 40-year drug addiction that included four stints in state prisons on drug-related charges, multiple attempts to stop using drugs in treatment programs and mental hospitals, and bouts of homelessness. Thankfully, Ed got into recovery in 1986 and has now been clean and sober for 37 years. During those years, he worked with addicts/alcoholics, families, and programs as a health educator, lecturer, program developer, trainer, and consultant. In 2021, Ed and I published our jointly written memoir of addiction, recovery and jazz, Double Helix - reviewed by JazzTimes and DownBeat.

Now 94, Ed was diagnosed with stomach lymphoma in 2019, unexpectedly lost his vision in late 2020, and was diagnosed with liver cancer in 2021. Both cancers were treated, but not cured.

It’s been nearly 18 months since I started our first GoFundMe campaign to pay for in-home professional caregiving services for Ed. The generosity of the nearly 200 people who donated to that campaign enabled us to hire a part-time professional caregiver, Sophia, who has been with us since, providing Ed with the best possible care at home.

Still, his recent blindness has made his world very small. He lives in total darkness and no longer sees light or outlines of anything, leaving him unable or seriously limited to do the things he loves – especially his music, but also helping people with their addictions and lives, his wood projects, painting, using the computer and traveling. His spirits are lifted when musician friends come by to jam a little with him. But the loss of activities that gave so much purpose to his life has taken a huge emotional toll on him, including affecting his memory. He is often depressed and his feelings of worthlessness are incredibly distressing to witness. Recently, he has become more disoriented, making it harder for him to find his way around the house, meaning someone must be with him all the time. I can no longer safely leave him alone, even for half an hour, which again underscores how grateful I am to have Sophia and emphasizes the need for ongoing help.

Professional caregiving services have made it possible for Ed to remain at home – any change from the surroundings that are most familiar to him would gravely exacerbate his decline. These services have also covered some medical expenses (like expensive co-pays for CT scans to check his stomach lymphoma and still-existing liver tumor), and enable me to get away for several hours every week for some respite and time for errands. In addition to her excellent caregiving skills and the careful attention she gives him, Sophia adds humor and sparkle to his day. They sing and joke a lot together, and also argue like old friends. She occasionally takes him out for lunch or a ride along the Bay shoreline.

I had a hard time starting last year’s GoFundMe campaign for reasons that probably many of you can relate to - unwillingness to ask for help. I've had to stop working to care for Ed, and have learned that trying to provide 24/7 caregiving alone is not sustainable without financial and emotional support. I know I’m not alone, but one out of tens of millions of unpaid family caregivers who struggle as I do to weave together a “village” of caregivers and friends to help relieve some of the stress, isolation, and workload.

And so I again humbly ask for your help. Our goal is to raise $40,000, which will give us about 18 months to continue to pay for professional caregivers to help with Ed's long-term needs. If you are able to donate, please do. And please know that you do not have to leave a custom tip for GoFundMe.

We would also greatly appreciate your sharing this campaign with your network.

*****

Sometimes, sitting together in our garden, Ed bursts into song! And in doing what he loves the most, he transforms the moment. If he could, he would dedicate those songs to you.

Thank you for taking this journey with us.

Photo by Paul Simcock