Craig Learns to Fly, May 25, 2009

Okay, I’m starting to recover from caregiver meltdown last week. Our hospice nurse, Craig, and I have been in brainstorming mode trying to figure out how to not burn me out and wreck my body. And how to keep Craig home instead of down the road in a nursing home. As Craig is becoming harder and harder to transfer (As testimony, there’s an array of bruises on his posterior from landing on the arm of the wheelchair), we explored whether to confine him to bed. The decision was “not yet” – and we got him his own personal flying device – a Hoyer lift. See photos:

www.claricomm.com/CraigFlying.jpg

www.claricomm.com/Craig-Annie-and-Hoyer-Lift.jpg

Craig’s initial response the night the lift device showed up was complete resistance. I got very frank about an “attitude adjustment” – it was let the lift stay or he could consider either being bedridden or moving to a nursing home! Now he’s decided it’s fun…in spite of my challenges driving the thing and operating three separate controls on it! He also agreed to an increase in the steroid dose, which is helping him talk better and making bathroom transfers easier and safer.

Over the last few days, it became clear that I could no longer safely transfer Craig in and out of the shower either. Hospice is now providing a daily nursing assistant to bathe him in bed and get him dressed and up in the morning. That’s very helpful.

I was able to get to a massage therapist and chiropractor on Friday and then had a respite day on Saturday. Unfortunately, friend Nik Tressler then got stuck with our ongoing saga of Craig’s digestive system. He took Craig out for a nice breakfast. On their return home, diarrhea and vomiting both hit simultaneously – thankfully in the bathroom. They blessedly cleaned it up and didn’t call me, so I continued on with resting and relaxing and dealt with it from 4:30 to midnight instead. We are trying to determine whether one of the medicines is causing this…that’s our best guess at the moment. Craig’s getting very tired of rice, even though I’m varying his diet with rice cakes, cooked rice, baby rice cereal, rice milk, Rice Krispies, Rice Chex… It’s getting broken up with bananas and applesauce, too! So, we hope to resolve this very soon…

Craig is talking about it being “disorienting” that he is wandering between this world and the next one. He says it’s “weird” and it’s “easy to go, hard to stay.” We talked about the possible wisdom of this transition taking time, being gradual, and at times being difficult. He painted three pictures this afternoon about wanting to be with the angels and about the angels “singing beautiful, clean, and clear.” It was the first I knew that he had heard the angels sing.

We hosted our weekly study circle tonight and began it with a brief memorial service for relatives of the group who had passed away. Craig shared about two of his “angel guides”. We used a beautiful CD of music called “Fire and Gold” by Elika Mahony (www.elikamahony.com) – heavenly. We then began studying the section in our book about “Life and Death”, so Craig’s experiences kept coming up all evening.

Every day now is different. Routines are virtually non-existent. Two days lately, our morning couple prayers happened at 9 or 10 at night. I’m getting better at eating while Craig is sleeping and not waiting for him to wake up. I have to be vigilant to not miss doses of pills – both his and mine. There is a stream of people in and out of the house at a time when Craig just wants peace and quiet…but unfortunately, that would mean me doing everything, and that’s not possible. So, we cope one day at a time doing the best we can.

Love,

Susanne