I must confess that I have begun a new blog entry in my mind for weeks now. The truth is that so many things have happened since our move that the best I can manage is a digest. I also have some insights to share but will probably cover them in a separate post.
I begin with a sense of indebtedness. Since Dan and I have always been the contributors, the givers, the donors to others with the resources that God has generously provided to us, this new role of being a receiver is one that is uncomfortable to me. Please don’t hear me say that we are ungrateful. As I will later explain, without the physical and financial help that others have provided, I don’t know where we would be. Some people have helped us out of their wealth, some out of their own strapped circumstances. I am humbled by both types of gifts.
Like the tasks that have mounded up around me, things associated with the move, with my own job responsibilities, and associated of course with Dan’s care, so my sense of falling behind in expressing appreciation mounds up.
To recap what has happened to us in the last month: As Dan’s release from the Health South Rehab Hospital neared, I pleaded with God for direction one day as I drove to the hospital. When I entered the parking lot, our friend Steve texted me saying, “I have found your van” – the van we would need to transport Dan. Our friend felt God directed him to the van—a sprinkler he was repairing at his mother’s house was spraying right on a neighbor’s van which they were thinking about selling. The price was very reasonable but when I wanted to pay for it, a group of our friends had paid for it, and another friend Dennis had arranged all the necessary repairs.
Twenty minutes later our friend Howard told me, “I have found your house.” With his help, we have a wonderful place to live, in town, small enough to manage, and convenient. Best of all, it has a track system in the ceiling that allows me and other caregivers to get Dan in and out of bed, into and out of his motorized wheelchair, and allows bathing and other tasks.
Several people have come to the house and said that I should give a more full description of the track system. So here goes. You know the tracks that hold curtains in hospital rooms? They are a kind of rail on the ceiling that holds disks for attachment of the curtains. The disks slide along the partially-open rail. Imagine something much more robust than the curtain rails, that hangs below the ceiling level of our bedroom and bath. The track runs from the bed, across the area in the bedroom where Dan parks his chair, and into the bathroom, which has a large tub into which Dan can be lowered to sit on a shower chair.
To transport him from these places, we use a U-sling, which stretches across his back and then the “legs” of the U wrap under and around his legs. There are heavy loops near his arms and on the legs. The whole arrangement fits onto hooks and carabiners, which in turn are attached to a box Dan calls “R2.” R2 is suspended from the track system, and is charged every night. It slides along the track almost effortlessly when we push it. Its motor makes it go up and down on its own cable. So it can come on the track from its charging station in the bathroom, and using its buttons I can lower it and put the U-sling’s loops onto its hooks. A touch of the buttons and R2 lifts him up, I push him to the chair or bed, and then lower him, detach him and remove the U-sling. (What an enormous improvement over the other sling and manual hoyer lift system we were using before. If you’ve ever pushed a patient in a hoyer over carpet, or tried to get a regular sling under a person in a wheelchair, you can imagine what a blessing this sling and track are. Getting him into bed and ready to sleep only takes about 20 minutes now.)
Dan has very busy days! Twice a week a physical therapist comes and spends a couple of hours each visit teaching him ways to stretch his reluctant muscles and take advantage of the returning nerve responses. The days she doesn’t come, Dan’s caregivers put him through a routine of range-of-motion and stretching exercises while he is still in bed. He also has an occupational therapist who comes twice a week. She uses electrodes and other devices to help him better learn to use his hands and arms. She leaves him assignments which involve stretching bands, special gloves which must be worn an hour a day to make his stiff hands form fists, and other tasks.
A home health care nurse comes once a week and evaluates and treats him. In addition, he has gone to the offices of his urologist and primary care physicians and to hospitals for x-rays and scans.
Eating and drinking with the aid of special devices, transfers from one surface to another, being turned in bed several times a night – his life is complicated. Most days he feels good and watches television, talks via speakerphone to friends, enjoys short visits from friends, and likes to ride down to a nearby community center. We are having some issues with his wheelchair and with getting in and out of the van, so he doesn’t travel much more than that in a car, at least for now until his new wheelchair arrives.
He’s had a couple of very bad days in the last couple of weeks, too. One day he had digestive upsets which is quite an issue for someone in a wheelchair. Another day issues with his foley brought his urologist to the house for a house call (!) and then a trip to a hospital for a procedure under anesthesia.
He is cheerful and optimistic as he sees improvement in his strength and abilities. (He can now shift his weight to help me turn him from side to side in bed, for instance. You have no idea how much that helps me.) We had entire crews of people who came to our house, packed us up, moved us, and unpacked the essentials for us. Thanks to the generosity of friends and our church, we have the resources to have someone come in several hours each day to help me with some of the really difficult tasks like bathing him. We are so blessed, and so grateful.
One thing he treasures above all is the chance to tell people how God has sustained us through all this. We are surrounded by physical manifestations of His care. Dan believes this experience has made him a better shepherd for the flock at Mountainside Church of Christ, and he loves encouraging others.
There is no good “explanation” for the way we have been blessed. Dan is a good man, I’ve tried to serve others, but we certainly haven’t “earned” this kind of help. As I hear people continuing to offer help, I believe that what I am seeing is people’s enthusiasm for becoming part of this wondrous story of what God can do, what God does do.
I’d like to think that people know the truth of what their service is doing: It’s not just helping two people who have suddenly and unexpectedly found themselves unable to deal with an overwhelming task.
“Whatever you have done for the least of My brethren,” Jesus said, “You have done it for Me.”
I hope you know that, generous and loving friends. It is Jesus whose boxes and furniture you packed and hefted, Jesus you cooked meals for; for Jesus–and I believe, because of Jesus.
I see and know and can hardly begin to even express my thanks.
He sees, He knows, He surely rewards.
So glad to get your update. Your love for each other, and support as a family have become more and more apparent. You are truly an inspiration for so many. We all should hope, if misfortune should come our way, that we will handle ourselves with the same strength and grace that your family has displayed for all to witness.
Pete
I HAVE HEARD SO MANY GOOD THINGS ABOUT YOU I FEEL THT I KNOW YOU!!!! JUST KNOW THAT I AM PRAYING FOR YOU AND LOVE YOU !!!!! GLAD THINGS ARE GETTING SOMEWAHT EASIER FOR YOU AND YOURS!!!!