Is There Any Way to Do This Well? May 29, 2009

Our hospice art therapist gave us a timely reminder today that what we have been going through these last weeks is very much like the birth canal transition for babies. It’s often messy and full of pain, but the outcome is generally a happy one! Craig just wants calm, quiet space to wind down his life. But dealing with his physical needs just seems to keep requiring more people and more fuss. Wednesday night was a brief trip into hell. At the end of the evening, I wrote this to the hospice nurse:

“Okay, I give up. I can’t do any transfer any more. My neck’s out. My back’s out. And the Hoyer lift and I are having swearing pitched battles with one another. I tried tonight to get him from the bed to the bathroom…in a hurry because he thought he had to have a BM and didn’t want to have it in the bed. I had trouble getting him straight in the sling. I’m having trouble all the time pushing him in the lift, getting the legs of the lift to stay apart (they keep moving back together) and then getting him far enough into/straight into the chair when I’m doing it by myself. I’m not strong enough to lift him back into the chair. He had no strength in his legs and couldn’t help. I finally dropped him in as best as I could into the seat of the chair, but we were both so stressed that he had a mini-seizure. Then I got him to the toilet because he still had to go and we weren’t fast enough so he peed all over himself, his clothes, the floor, and me. And no BM. I had to keep holding the commode chair steady, because he’s so heavy and off center, that every time he moved, he almost tipped over. And then we held each other and cried. But then I couldn’t get him off the toilet, so the firemen had to come help get him off the toilet and back into bed [six of them in our little bathroom when we only needed two!].”

We then sat and listened to a spiritual music CD and ate pizza and waited for the on-call nurse. So, we calmed down and re-centered a bit. Someone came yesterday and did some re-training with me on the lift, so I actually did use it successfully at bedtime last night and tonight.

Yesterday was calmer (thank you God!). The hospice nursing assistant got Craig washed at 9 a.m. and he went back to sleep and got up about 1:15 p.m. We spent the afternoon and early evening with me reading our new “Empowered Healing” book to him all the way through and making edits. Then he was ready for bed around 9 p.m. Today we started another new routine. Craig sleeps in until a hospice nursing assistant comes at 11 to shave, bathe, and dress him. They then get him up for breakfast/lunch. We now have a new daily caregiving service, and they’ve sent us a very strong man who puts his arms all around Craig and lifts him from one place to another! So, that helped today. I got to the chiropractor and massage therapist and got the kinks out of my own body while they did that. And I got to miss the enema party with the hospice nurse at the same time! Yay! [Note: We evaluated whether to send Craig to a nursing home and decided to try the daily caregiver instead.]

I’ve been so accustomed to doing excellent caregiving for Craig that I’m frustrated at not being able to handle this period anywhere near as well as I would like to be. But, the team is rallying, and I’m trying my best, and we are muddling (“laboring”?!) through it all!

Love,

Susanne