I traveled 4564 miles, leaving Toledo, Oregon on Easter, arriving 47 days later on June 1 in Pendleton, Indiana. I am grateful to my Bishop, Elaine Stanovisky of the Greater Northwest Area of the UMC for her Episcopal Address at the Annual Conference. Her words touched me as I care for a brother with ALS and reminded me that this is, at the deepest level, my current appointment to ministry. [once a minister, always a minister]. I celebrate my UM tribe called the Oregon-Idaho Annual Conference of the UMC.
I cannot say thank-you enough for support from the tribe of people who love me who read this blog and support me in so many ways in this new “appointment” to a ministry with family. I have done this work in so many places with so many people, over the past 40 years, that it feels much like a lifetime of preparation for this current chapter of my life: living as an Oregonian by choice in the state I grew up in, appointed to love and support my brother Roger and those who love him for the rest of his life. My three siblings have cared earlier for our parents in their need; Barb and Steve have supported Roger for many years. I am honored now to be called to this service, in this place at this time. My ministry here is to create and cultivate community in Indiana – not in UMC churches – but creating a community – a tribe – of persons learning to love ourselves and God, following Jesus and loving strangers into friends
This is an email I sent out to Three of Roger’s children, and one of his three ex wives as I try to start a pattern of keeping them up to date on how he is doing and how they can provide support to him. It may also catch some of you up as well.
I am trying to make sure I have your correct emails and addresses. I will try to keep you posted on Roger’s condition and send out updates. Roger Wills is now living in Hancock County, at Kindred Healthcare,Green Meadows Drive, Greenfield IN 46140. The facility phone is (317) 462-3311. He appreciates cards… but does not have a phone in his room.
As you may or
may not know, Roger was diagnosed with ALS on April 3, 2017, after many medical appointments. By the time I arrived in Pendleton on June 1, Roger was falling 2-3 times every two
days at home.
e to help him with stand by assist, and called Steve’s workers or the local EMS to come pick Roger up off the steps or the floor, depending on where he had fallen, throughout the spring. At first Roger only needed help one or two times a week, but by the time I arrived it was clear to me that more help was needed than either Linda or I could provide. His doctor in Anderson, Steve and Barbara and I consulted, and I began to talk to Linda and Roger about the need to keep Roger safe. He knew that the house was no longer a place he could be safe; he also experienced the difference when I began daily coming to stand by and help him stand at 8am and as he went to bed at 10 pm. With that support he did not fall again at home.
We found – thanks to God’s guidance – a wonderful facility in Greenfield, Kindred Healthcare that would take him on Medicaid and which specializes on persons with high care needs like patients with ALS. They have experience with long term care and are ON IT…such as helping us get Roger’s Medicaid application in, and get him equipment that will help him communicate, and move more easily. Check out their website http://www.regencygreenfield.com [It looks like they may have a new owner…regency is a big health care provider too].
Roger moved in June 15. I have worked to help get him settled and he seems to be doing very well. He has fallen to the floor ONE TIME in 14 days! He has tried to move without asking for help a few other times and almost fallen. Staff are trying to train Roger to ask for help and wait for them. That is hard, but he is getting better at calling ahead and waiting.
He loves outings. He went fishing (he said for the first time in his life) the other evening. He went bowling another day. He was able to transfer to a car I borrowed and get to Hayley’s graduation party in Pendleton. We took a drive on the way home through the park where the falls was flooded!
Roger’s speech is already very hard to understand. His legs are very weak and give out with no warning, hence the need for him
to be somewhere where 24/7 there is staff available to help him move from bed to his big
recliner (which is also a lift chair that helps him stand up) or to a wheel chair. His right arm and leg are almost unable to move when he tries to lift them.
Currently he gets Physical Therapy(helping with leg and arm strengthening); Occupational Therapy (daily task help like a tool for getting buttons to work, putting on socks, a splint to help his hands not curl up); Speech Pathologist (helping order a communication device to put Roger’s voice on a tablet that will let him touch and later simply LOOK to talk to us in his own voice when his voice muscles no longer work).
His therapy folks expect he may get a bit stronger, and have less falls so they each see him 5x per week. He is quite busy! Roger is eager to please these folks and reports walking 125 feet with his walker and stand beside assist.
I retired from my 40 years of working the first of 2015. I had decided in February to rent my home in Oregon and take my Roadtrek camper traveling. I drove from Oregon, through most all of the National Parks in Utah, into the SW corner of Colorado (Cortez) then Northern NM, a bit of TX, OK, AR, TN, KY to Indiana. I left Easter Sunday and arrived in Pendleton June 1. Traveled about 4500 miles.
The plan was to help Linda and Roger downsize and pack to move into an apartment with no steps; instead in 15 days we got Roger into Kindred Care. Roger helped sort his things, choosing what to give away and what to keep. Linda is still packing up her stuff and will be moving to her Sister Carol’s house in Shirley, IN. This has been the plan for Linda since we first learned of Roger’s ALS, though it happened faster than people expected. Carol will bring Linda to visit Roger when possible.
My plans are to live in Greenfield and be Roger’s advocate and companion many times a week. July 3-10 I am flying to Oregon, packing up a storage room to move to a storage unit; officiating at a wedding. I am then packing my VIBE with things I want for the next couple of years in Indiana, drive across the country with a detour to visit Glacier NP with 3 friends. I will be settling into an apartment 1/2 mile from Roger in Greenfield, so I can be nearby to advocate and support him as we all travel this ALS journey with him. I hope to do some short trips in my camper van this fall.
My address in Greenfield after August 10 will be :Brenda Wills, 1684 Village Drive East, Apart. C, Greenfield IN 46064.
Roger is aware that with ALS he will not get better; we are hoping he gets stronger and that with the therapist help, his decline slows and he can enjoy life as it is now, for many months. However, he has declined VERY FAST over the past 3 months. His mind is not affected by ALS, but his speech and arm/legs and swallowing are. If you want to have a conversation with him or can visit, I would encourage you to make plans to do that ASAP. We have no guarantees about this disease or Roger’s body’s way of dealing with it. I am hopeful and anticipating living in Greenfield for at least a year – and am hoping it may be for 2 1/2 years.
You can learn more about ALS at http://www.webmd.com/brain/amyotrophic-lateral-sclerosis. I will be in communication again later this summer or early fall. Please let me know if you plan to come visit Roger. If you need a place to stay, I will have a second bedroom you could sleep in for a few days.
We are all (you, me, Roger, every person we encounter every day) are doing the very best we can….and that is all we can expect of one another.
We are also all responsible for taking care of ourselves and making the best choices for the earth, the people we love and ourselves, every day.
Thank you for your support of Roger in anyway you can. A card sent, a visit, a prayer said. I know he has sometimes been a difficult person, and I also know he grew up in a very difficult family which he survived by being who he is. Roger loves you as much as he can, has provided for you as best he could, and I think he would appreciate any connections you can make at this time.
I know Roger loves his children and is proud of you, even if you don’t often hear that from him! He is much like our dad in that way; our dad did not seem to talk or even show his kids how proud he was of them or tell them about his feelings. Both dad and Roger spent their lives working hard and hoping that hard work communicated his love.
You might imagine the last 30 days have left little time for a blog. As I said above, I am honored now to be called to this service, in this place at this time.