Wednesday, May 8, 12:15pm
Years ago, while discussing the dozens of subjects that came up over dinner with Bernie, the subject of death came up casually. I found Father Bernie offered an insightful and balanced understanding. We are to live as ourselves, our personality and our interests, naturally, until there was no more energy to do so.
More recently Kathleen and I talked with Bernie about his wishes for extraordinary measures to keep him alive. He was quick and clear. Those minor efforts to improve and sustain life were appropriate, but heroic, drastic measures were not. Antibiotics yes, intravenous feedings, no.
I was surprised when I got a call from Nazareth House this week and they offered hospice services. Because Kathleen was a hospice social worker for years I have heard the touching, sensitive stories that her patients and their families told about their loved ones being loved and cared for through their death and beyond. I expected Bernie would one day need hospice, but the call surprised me.
Kathleen and I met with Alice from Nazareth, and Connie, the on-site hospice social worker at Nazareth on Wednesday. While there is no significant single matter, there is an accumulation of signals that we should prepare and anticipate Bernie's death.
At the time of Bernie's moving out of his apartment, now over two years ago, he reviewed many of the necessary steps regarding his future. He knew he had to stop driving, had to stop living independently, had to ask for and receive help with meals, laundry etc. He also prepared his will, made plans for his burial and final sacraments.
From time to time, these past two years, he has expressed his anxiety. He did say he was relieved when he was reminded he was prepared for whatever may come, and he was surrounded by people who love him and take care for him.
While there is nothing imminent, this week I am taken by this signpost along the path. Kathleen, Connie (the on-site hospice social worker), Mary Shembre, and others have all casually described hospice as a series of calm, caring decisions, designed to accept the uncertain nearing of death. When someone has the signals which make hospice appropriate, it is often the case that they are in their last months of life. Part of the miracle of life is we never know how, where, or when. We can see a gentle progression and acceptance of the stages.
"Why did you call this week?" I asked Don, the RN from the hospice agency which serves Nazareth. "Hospice is appropriate when we see a single signal which usually
precurses death." One dial which goes from the green to yellow to red. "But we also watch for the overview on the general condition of all of the signals." All dials go from steady green to slowly fade into yellow. "A significant issue is sudden weight loss. The standard is 10% loss over a six month period. Father has had over 10% loss in three months. That is worrisome. He is becoming more confused. Less willing to engage. Less motivated. None of these alone is exactly alarming, but in sum they suggest it is appropriate that care reflect the total person and his current condition."
As an introduction, Connie had told us of several Nazareth residents who are on hospice care for months and years -- one she cited nearly two and a half years. The progression can be swift, or gradual, but at each evaluation (at scheduled intervals) the changes in health and well-being are mostly downward. There are several residents at Nazareth who were on Hospice, and their condition improved so that they no longer met the criteria, and were taken off the extra care for a while, and returned when necessary.
(This business of taken "on and off" hospice is the curious conjunction of money and care. In the case of Bernie, Medicare pays for the additional support and services he will receive in hospice. Because Medicare pays, they require evaluation, first at the onset where his current condition has to meet the minimum standards -- verified by staff, Kathleen as Designated Power of Attorney for Health Care, and the caring Medical Doctor. He will be evaluated again in 3 months, 6 months, and 8 months, and thereafter every two months. If his signals improve he will no longer qualify -- medicare stops paying -- and Bernie returns to the normal level of care of all Nazareth Special Unit residents.
During the hospice period he receives extra care even beyond what Nazareth provides. The additional care, plus the required evaluations focus on what is actually important: Father's well-being. If he does not need the special attention it will be withdrawn. If he does, it is provided.)
While it isn't exactly material to the larger questions of Father Bernie's next few months, he is being treated this week for an inflamed foot.
Cellulitis is what all the nurses called it. Routine and common they also called it. I immediately look it up (Click
here for more information if you wish) and see that it fits the above category of routine matters which are treated routinely. All expect it to respond to antibiotics.
His bladder incontinence continues. He seemed very low energy: did not lift his head and only answered questions with the minimum of words while he rested, dressed with a blanket over him, on his side in bed.
As always, on leaving, Kathleen and I asked for his prayers. He brightened.
"Is Kathleen here?"
"Yes, I think they do." "Would it fit?" "We'll have to see about that." And Bernie and I begin an irrepressible giggle, hoping no-one will notice. Soon he is dozing again.
