On being a caregiver

It's been 2 weeks since our son Phil died, and I may write more of my reflections (and advice to others) at my blog when they come to me. Let me first say it is a privilege to be with a loved one when he is dying, although it will be the most difficult thing you'll ever do. Phil was Phil from the beginning to the end, and although that could be very frustrating when we wanted him to go a different direction or not cause self-harm, he was also a testament to God's creative power. From the moment of our conception to the moment of our last breath, we are the same person going through stages. Jesus has ennobled our frail human bodies that get sick and die, and from here on Phil has no bounds.

When we got the call from hospice in February we were totally unprepared--we thought Phil would be continuing his chemo and battling his brain tumor. It was an ugly fight, but he was determined to stick with the treatment. The appointments were on the calendar. But with hospice, treatment stops and palliative care begins. Our weekly visit and daily phone calls turned into 24/7 care. Because of HIPAA and Phil's personality, we knew little about his treatment or glioblastoma, only what we'd been able to learn on our own. We didn't live in the same community and knew nothing about his financial situation. The national situation almost eliminated our familiar support network. And we were so wrong about so many things.

Imagine (if you are about my age) you know how to drive a car--you've been driving so long it's almost second nature. But it's becoming difficult and you no longer do the free ways and stay with the streets you know. You vaguely remember how to drive a stick shift because you learned that as a teen (or in my case, your husband has one). So, these two nice ladies you've never seen before pay you a visit, show you a 1950s era pick up truck, put you behind the wheel, and say, "Don't worry, we'll teach you what you need to know." Meanwhile you're headed for the entrance ramp to drive through the center of Atlanta at rush hour, or Chicago through 50 construction zones at night. In a pick up truck you don't remember how to drive. At every stop light, a different person climbs in the cab and reroutes you--no map, no GPS. Sometimes at night something breaks down and it takes hours to get help. Fortunately, there are some hitch hikers to pick up along the way who really do help and explain things.

If you've been or will be a caregiver, your mileage will vary; spouses have rights and relationships with the medical system, financial institutions and social networks that parents and adult children don't have. The same people who are there to help may also say, by law we can't advise you, or that's not my area of expertise.

If you are healthy now and have no worries, pause and reflect. Two days before Phil was diagnosed we'd had a birthday lunch at the Chef-o-Nette in our old neighborhood and we knew nothing about what would be coming on October 1.