by Ginnie Horst Burkholder
I have chosen a facility that would seem to best meet Nelson’s need for long-term care. But like Mary and Joseph, I find there is no room.
Sometime before 2003 when both my parents were in a nursing home, I began to acknowledge that I might some day need daytime care for Nelson. I was told it would be good to get his name on a list, so that when the time came there would be no waiting. At the time, this need still seemed so remote that I submitted his name with relative ease. Then we went on with the perplexing task of adjusting to Lewy body dementia. Time took both my parents, and I brought in home help for me with Nelson. Soon years had gone by. I had never heard from the nursing home, but it was 40 miles from our home and by that time, I had begun to explore closer facilities.
Occasionally, I would take a respite weekend, and Nelson would stay in a nursing home for a few days. In this way we experienced different facilities first-hand and learned what kind of care he might get. I soon discovered that some of the places that give the best care were private pay only, and once Nelson went on Medicaid, those places had to be dropped as options. Thus began the trying process of finding long-term care.
More than a year ago, a facility with an excellent reputation in the area came to my attention. I inquired about Medicaid, and they said they accept it. Its location was reasonably close to where we live. We were invited to eat a meal there. This family-owned facility seemed to be attentive to clients, and the two dogs that roamed the halls added interest for Nelson who had always liked dogs. I felt satisfied that this was my first choice. I put his name on a waiting list. I never heard back from them. I called to inquire about where we were on the list. They said, “You need a Plan B.”
I began to use respite weekends to explore other facilities when it was allowed. Not all facilities provide respite stays. One facility’s leg monitor was so tight that now, a year later, Nelson still has a mark on his ankle. He came back to me after those four days unshaven, disoriented, and looking as though he had been living on the streets. I had taken four days’ respite because I was sick, and while I wasn’t much better when he came back, my determination rallied. I would find a better place or do it myself.
In another facility, I stayed an hour or so before leaving him there for the weekend. This facility looked very inviting in a previous tour. But that first hour before I left him told me otherwise. During that time, an unanswered buzzer at the nurse’s station and a freezing cold dining room told me this was not where I wanted him to be either. This facility also lost his clothes during his two-day stay, and I had to make several trips back there before I’d finally retrieved them all.
I began looking at facilities farther away. At the recommendation of a neighbor, I found another place 12 miles from home. I visited, talked to the spouse of a resident, and got excited. This seemed like the ideal place. It became my new first choice. After putting his name on a waiting list and calling several times to see where we stood, I again heard the dreadful words, “You need a Plan B.”
You ARE Plan B, I told them.
I have now put his name on another list as Plan C. This facility doesn’t do respite care, but several people have recommended it. It is 12 miles of city driving from our house. It is an older facility and has more of an institutional look, so it remains my third choice. I have learned that once a person has been admitted to the skilled nursing unit, that person has priority for a bed that becomes available in the dementia unit. Someone on the list who is outside the facility must wait. Nelson’s physical health is good, so there is nothing in sight that might admit him through that route.
In the meantime, the messages are coming in from caregivers and friends. A friend reports, “He was pretty lost today at church.”
A note in our caregivers’ notebook from my sister, who provides morning respite care and then takes him to adult day care, says, “Nelson barely able to do anything this a.m. Seems unable to wake up. Not sure if we’ll make it out of here!”
And from his adult day care, “He was uncharacteristically confused today.”
His knees have recently started buckling at unexpected times. He started to go down outside the grocery store, and I stood there for a long moment, trying to hold him up until someone stopped to help. At home in the evening, he is unable to move his feet more than an inch or two at a time, and he needs pushing and pulling to keep going. Yet true to Lewy body unpredictability, during a recent daytime walk he took off at a brisk pace so that we were nearly running to keep up with him.
Last week, the Plan C facility said a room could be available in a few weeks. The Plan B facility called to ask if we still want to be on the list and, if so, did we want something soon? When I said, “Yes,” trepidation and hope somersaulted inside me simultaneously. It is time, but the possibility of this change stirs up fears.
And so in this season of Advent, I wait for a bed. Will it be in the inn of choice, or will I have to make do with some lowly stable? I wonder about the meeting of the human and the divine. Isn’t all of life lived in advent – waiting, watching, longing for that meeting with God – where the human entanglements are shed for a few seconds of intersection with divine truth? Where whether or not there is a bed simply doesn’t matter?
Year after year as I’ve watched the Nelson I married drift farther from me, platitudes of faith have washed up, faded and meaningless. Now during this Advent season my thoughts have percolated and coalesced into a poem that expresses my journey, my advent.
Birth to death
Between the crush
Of human fear
And God’s divine presence
For God’s intersection
Longing for more
Than the illusion
Of safety and security
Waiting for faith
That is not dependent on what is seen
That is not dependent on what is held
Watching human ego aspirations
Yield to the Divine
And then unwittingly
Grasping again for control
The life journey
On the God within
To trust in each unknown
That God has already come
Into the squeeze
Between human fear
And the tentative hope of lagging faith
All of life
©2009 Ginnie Horst Burkholder
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