I wrote about my brother Bob’s illness and subsequent death in The Winter of Grief.What I saved for this story is events I experienced, especially in the last year, involving my brother. Here’s the backstory: When Bob was diagnosed with Parkinson’s and Dementia in 2010, he started his care in a nursing home in the small, rural town where his youngest son lived, in Ord, NE. Once he was stabilized he was able to move to the Assisted Living facility in that town. He was sixty-five years old, and noted he was the youngest person there, by at least ten years. Periodically he would talk to me about moving to Kansas. He would also talk to our brother in Colorado about moving to Colorado. Neither of us were able to help him move. I considered the potential of Bob moving to my town and state. Since the major portion of his medical insurance was state-residency based, I did not think I could take on the task of helping him gain residency, thus medical benefits, here. My home state of Kansas had a back-log of Medicaid eligibility, with no promise of that changing. We live in a two-bedroom house, and my son was just starting high school. My stepson lives with us in the summers. Basically we had a full house and couldn’t bring Bob here. This left me feeling lacking and wishing I could be of more help to him. We visited him once a year at that time, even having an extended family gathering at a bed and breakfast in Ord in 2013.
In 2016, Bob’s son left Ord and moved to Grand Island, NE. Bob believed he had no connections to keep him in Ord, and wanted to live in an urban area. We helped him by researching and visiting facilities in Lincoln, NE. We found one that met his needs and wishes, and he moved to Lincoln. Since he was now over one hundred miles closer to me, I hoped to visit him more often. My daughter and her toddler traveled with me that June, to celebrate Bob’s birthday. We took him to a popular restaurant for lunch. He had to traverse a short, steep ramp in the restaurant to be seated. He was using his walker, but started falling forward. Two diners were in range, quickly sized up the situation and reached out to steady him. I was shaken by the potential of him falling and realized I did not have the expertise to lift him off of the floor. I hesitantly drove him out for supper, and later to a twelve-step meeting. They were uneventful and he loved every moment. I was thoroughly exhausted at the end of that birthday celebration and realized I was no longer comfortable transporting him.
Bob enjoyed the city, but his health declined, his needs increased, which meant he no longer qualified for assisted living. He moved to a nursing home in Grand Island, NE at the end of 2016, to be in the same town as his son.
When I retired later in 2017, I considered ways to be involved with his life. I asked Bob and his sons if I could participate in his quarterly Care Plan meetings, via conference call. They were fine with that; Bob indicated he would find my input helpful.
In my social work career, I had attended a multitude of meetings for children that had some of the same features as an adult’s care plan meeting. I knew these meetings could either be a place of a dynamic group process of relevant action plans being shaped or a perfunctory meeting, convening for the sake of meeting state and federal requirements. I had experienced both types. I was hoping for the former. The angle I decided to focus on in his Care Plan meetings was activities meaningful to Bob. As he had been a Lutheran pastor, church and theology was still an interest and passion of his. He had also attended twelve-step support groups and continued to find that fellowship important. I knew he had found rides to both in Ord, but that had faltered when he moved to Lincoln. Our brother in Lincoln gave him information to make those contacts himself, but we didn’t realize he was not able to function at that level anymore. It was so hard to gauge his current capabilities and what he could no longer do independently. Our brother had just begun to make contact for Bob at a local church when Bob moved to Grand Island. The Lincoln pastor contacted a pastor in Grand Island, and we were aware a pastor was making visits to Bob. But he was no longer attending church. His physical decline was enough to not task volunteers with helping him in and out of vehicles. To engage in worship, the activities director had Bob be in charge of starting the DVD player of a freshly burned DVD of a local church service, delivered to the nursing home. When we talked about this, he acknowledged he had little theological alignment with the church but appreciated having exposure to church services. He also helped lead a Bible study. The activities director, our brother and I all tried to set up ways to be participate in Twelve Step groups in Grand Island, but nothing ever worked out.
In June, 2018, my husband Ken and I were heading out for our daily walk. It had been pretty hot, so we thought of going to our local indoor track, but decided to face the heat and walk in our neighborhood. We have several different routes we take, but on the one we chose that day, about a mile into the walk, I saw a car with a Nebraska specialty license plate that said “ELCAREV”. Not being a congenital Lutheran from Nebraska, as I was, I explained to Ken this plate indicated the car belonged to a minister of the Lutheran branch called the Evangelical Lutheran Church in America (ELCA), which was the brand I had spent most of my life attending. And that REV stood for Reverend. As we started walking away, a woman walked out of the house and towards this car. I called out to her, “Cool license plate; where do you live?” She did that thing I so recognize; she started qualifying that her town was small, and I probably wouldn’t have heard of it. She said she lived in Ord, NE and is the minister at Bethany Lutheran Church. I responded, not only had I heard of Ord, but we had been there to visit my brother, Bob Larson. She said, “I know Bob, he is a member of my church!” She then explained she had lost touch with him when he moved to Lincoln. Her home office (It’s actually the Nebraska Synod Office, for those of you who like accuracy and relate to church jargon. I like deciphering jargon.) had recently contacted her to let her know Bob’s current address. She said she made the drive to Grand Island weekly for text study (They also call if Peri-copes study. More jargon!) and had begun to visit Bob and serve him communion. I was washed with gratitude to know Bob was being spiritually nurtured in a manner familiar and dear to him.
Rev. Glenda explained her two adult sons live in Lawrence, but in two different parts of town. She just happened to be at this son’s house, and she just happened to decide to go to her car to retrieve her water bottle. When we just happened to be walking by. We were all in awe of this harmonic convergence and all tearing up. We exchanged phone numbers so we could continue to communicate about Bob.
With this dramatic insertion of my brother into my local life, I decided I needed to contact his nursing home to find out when his next Care Plan meeting was scheduled. I was surprised to learn it was the next week, on Wednesday, June 20th! Two of my cousins I lived down the road, so to speak, in Nebraska, so I asked them for lodging and a visit. They were both available on the dates I needed! The trip was falling together seamlessly.
I saw Bob on Monday, asking him what he wanted addressed at his Care Plan meeting on Wednesday. He gave me several items; some made sense to me, some didn’t. But, overall, we had a coherent conversation. I told him of meeting Rev. Glenda and he acknowledged she was visiting him. I then drove further west, to stay with my cousin.
A year prior, my nephew told me Bob wished, when he died, to have a Lutheran funeral service and to be buried at the same cemetery as our parents. It’s a rural cemetery, formerly connected to a German Lutheran Church and parochial school. I knew nothing about the process of getting a burial plot there, but my cousins did. I asked them and found out it was simple to reserve a burial plot; one cousin gave me the contact person.
Tuesday was a day to hang out with my cousin hosting me, and we decided to visit the cemetery, to see our parents’ graves, and take a look at available burial spots for my brother’s request. We found a spot right beside my parents.
She suggested we visit the local funeral home, to gather more information about burial at Immanuel Cemetery. The information from the funeral director was specific and not as complicated as I had imagined . I later passed on the information to my nephews, for use in that unforeseen future.
The next day I said goodbye to my cousins and drove back to Grand Island, to attend Bob’s Care Plan meeting. Bob seemed disoriented, so I was glad I had had the conversation a couple of days prior, to share his concerns. After his meeting I drove to a local fast food of Bob’s choice, Runza Hut, a local favorite, and brought it back for Bob’s lunch. He enjoyed every last bite.
I drove home via Lincoln, NE, so I could have supper with our brother. Knowing he is proficient at wood working, it occurred to me to ask him to consider making an urn for Bob’s ashes. He gave me a decisive yes. I really considered this planning for an event years away, but was grateful plans were falling in place so well.
After that, when I called Bob the conversations had digressed with the progression of his dementia. In November of 2018, my nephew let me know Bob was placed on Hospice care. They said he had declined, but they did not see death as imminent. He basically needed more daily care. I texted Rev. Glenda to let her know they had included chaplain care in the hospice services.
I wasn’t involved in his September Care Plan meeting as they had staff changes, who didn’t know to contact me. For Bob’s December Care Plan meeting, I again participated via conference call. The goals for his Care Plan were now comfort care, not rehabilitative care. This was hard to hear, but helpful to face the reality of Bob’s condition.
I was still surprised, though, when my nephew’s wife called to tell me in early January Bob was not eating and declining. I texted Rev. Glenda to tell her Ken and I were heading to Nebraska on a Sunday to say our goodbyes. Glenda did not anticipate coming to Grand Island at that time. A few hours later she texted me and said she was coming! This meant she was driving the eighty miles one way, after presiding at two church services that morning. My brother and his wife from Colorado came, my nephew and his wife were there, and Bob reveled in being surrounded by family. My nephew, his wife and I took opportunities to talk with Rev. Glenda about funeral services, within the confines of limited funds. Rev. Glenda offered her services and the services of her church in Ord with no need for payment. We were deeply touched, and relieved.
It turned out to be our last time to see Bob as he died six days later. My nephew and his wife worked with Rev. Glenda to arrange the funeral service. Our brother was able to build the wooden urn in time for the funeral service. The inurnment of ashes at the cemetery on the plains would wait for better weather.
Our family gathered, and Rev. Glenda a officiated a service honoring Bob. She told anecdotes of his church life in Ord; stories new to me. She told us when she moved to Ord she was still doing graduate work. She asked Bob to read her papers and said he gave constructive feedback. When Bob died Rev. Glenda informed the NE Synod Office and the Assistant to the Bishop participated in the funeral service. None of Bob’s family even considered this as an option, but we knew Bob would appreciate the acknowledgement of his ministry. And we were grateful for the immense care Rev. Glenda gave to the details and her ministry to us. Rev. Glenda turned out to be a blessing to my brother and his relatives. Much of this falling together because Ken and I decided to take a walk in our neighborhood on a warm day in June.