Stefan reports: (revised 5/28/13)

 Monday, May 20, 2013 9:30 am

This morning, May 20th, I arrived at Nazareth House at around 9:30.  Fr. Bernie was asleep in a recliner in the Care Unit's activity center.  Steve, a lively volunteer, was reading to the residents present, then playing the piano and getting them to sing.  I pulled up a chair beside Fr. Bernie and was simply present for him.  When he opened his eyes, he gave me a subtle smile and said it was good to see me.  While the entertainment continued, we exchanged a few more comments back and forth.  He would close his eyes, but would still be listening, then sleep, then wake again.

Laughing Women. Photo by B. Brennan

A deacon (?) entered the room and celebrated mass. After that Steve gave exercise instruction to whoever was awake, followed by an activity involving throwing a balloon around the room.  Fr. Bernie could not perform any of these tasks, but he looked on part of the time.

Lunch followed.  Dining at the table with Fr. Bernie and I was a priest who was once stationed at St. Michael’s and Church of the Visitacion.  He was a bit talkative, and Fr. Bernie being rather quiet, listened attentively.  I mentioned a few news items to Fr. Bernie, and he seemed to understand the basics of what was being said.  He said: “Your visit was perfectly timed.  Perfect timing.”  The only confusion he expressed was over the telling of the time on the wall clock, and wondering how he was going to stand up to go from his wheel chair to his bed without splitting his swollen foot open.  The time he could not figure out.  He admired my watch, which is one he gave me, and asked to borrow it for a while (would it make him even more apprehensive about time?  But who can know for sure…).  He became restless and began to get up when an assistant came over to inform him a nurse would be by and to not stand up.  “See, see that?”  He said, “It’s like I’m in a prison here.”  I assured him that they are looking out for him, and that this is the best place he can be right now – and he agreed the food is better in the Care center than the other side of the house!  He enjoyed the rice pudding, and though he was nervous about what would take place after lunch, he did not get even half as anxious as he had during previous visits.

I followed him and a nurse to his room and told him I’d return in a little while, as he was preparing for a nap.  At about 3:30 I returned.  Mrs. Lynch helped me remember where his room was, and asked that I wake him, as he needed to be up.  He was polite, but kept his eyes shut, as he repeated, “I just want to sleep for now” a few times.  I asked him what he meant earlier about my visit being “perfect timing” and he said he didn’t remember saying that.  I sat by his bedside and read quietly, gently nudging him every 15 minutes to see if he was ready to rise.  “Please, let me sleep.”  And so at 4:30 I said goodbye and I’d be back another day.  He thanked me for the visit.

  +    +    +    +    +

This day was a sharp contrast to my visit when he was at the Kindred Smith Ranch facility.   I didn’t call ahead because he rarely answers the phone when I do, and if I did visit, he’d forget which day I was supposed to have been there.  So that day he was in pain and he did not want me around.  I wore a cowboy hat and spoke with a twang, hoping to spark out of him a touch of the humor he used to display (remember?  He could ramble on like a regular Robin Williams!), but my gimmick only irritated him.  “Can’t you come tomorrow, or the next day?”  I could not.  “Why don’t you call me next time?”  There ended that session.

Father Bernie, don’t worry!  Jesus has got your back, your arms and your legs.  The angels are working hard to make sure people here tend to your needs.  Worry not, dear friend!

Why wake him?

Monday, May 20, 2013 2:15 pm

No Bernie in the lounge, so I check his room. There he is. I go to the side of his bed and hold his hand. No response. I wait a few minutes. Still no activity.

He is dressed, freshly shaved, combed hair sleeping soundly on his side, with his bare infected foot on a pillow. A blanket covers him.

Why should I wake him? I just wanted to check on him. I find the Nazareth RN and she reports that he was wide awake for a visitor nearly all morning. I said I peeked at his foot and it seemed more swollen than last week. "Yes."

Connie, the Hospice RN notices I'm waiting and she said. "I'm on my way to an appointment, but as soon as I'm done, I'll check on Father." "Good, we can talk tomorrow."

Not responding to treatment....

Fri afternoon, May 17th.
3:30 pm

No Bernie in the lobby room. We go to his room and find Father dressed, sleeping with a blanket.  He does not respond to either Kathleen or myself.

We go out to find Connie, the on-site hospice nurse.  How's Bernie doing? "He is not getting better."  His cellulitis did not respond to the first course of antibiotics. We're using the second and third set of antibiotics. It will have run it's course on Monday, but so far we are not seeing any response.  Monday we will reevaluate again.  "What is the next course?" "Unless you have changed your wishes, we are running out of the normal courses of actions. The next steps are against your wish for non-heroic measures."

This is why we make difficult decisions ahead of time. The hospice nurse looks at Kathleen, the hospice social worker. Without words being said they confirm the other's understanding.

The reality is Bernie is not fighting a deteriorating condition. "The next steps are hospitalization and intravenous antibiotics.  That is beyond the measures of your health directive." "And then what usually happens?" "The infection enters the blood stream and spreads.  If it does not respond to antibiotics it saps strength and health." "A matter of months?," Kathleen asks, probably for my benefit.  "More like a matter of weeks. If we saw a vibrant, active Father then I would be more positive.  However, Bernie has almost totally withdrawn. He resists getting out of bed and sleeps all day. He does not have a robust appetite. He is confused."

"What are the next stages?" "If the infection enters the bloodstream we should expect Bernie to weaken."  "What about lucidity." "It will fade. Usually the last two weeks or so there is little awareness. Days are spent in bed."

We go back to Father's room and see him being wheeled into the dining room for dinner.  It is now a little after four.  "Have you had any visitors today?", Kathleen asks. "No, they get me up about seven, and we are now waiting for breakfast. So there hasn't been time for anyone to come."  We tell him dinner will be soon. "Well Ok." In the dining room there is a combination CD, Radio and Cassette player. Maybe fifty well used CDs and tapes are kept in the basket below. We put a Strauss CD on the player. Bernie taps his nails on the table in rhythm to the waltz.

We ask about his dinner table-mates. (Last week Alice reported she deliberately seated Bernie with other priests for meals.  One day, mistakenly, he was seated at a different table, and Bernie complained.) Today he is unaware of who they are.  He furtively glances at the clock as though it he was worried about making a train connection. "Are you worried about something?" "How will I get back to my room?" "After dinner the nurse will take you." "Oh, Ok."

Bernie answers all questions in a whisper, and only the minimum of words. He starts a sentence, and then trails off. He cannot remember what he was saying.

When his eyes are open, he only looks down. Mostly, he keeps his eyes closed. He asks what time it is each five minutes -- wanting us to confirm what he sees on the large clock over his right shoulder. We repeat this  maybe twenty times.

Gradually the room fills with other residents. Some on their own power, but most wheeled in. Just before dinner, we hold Bernie's hand. (It is cold to the touch.) We tell him we love him, tell him we pray for him, and ask for his prayers. He raises both hands to wave goodbye in papal style -- his trademark.

Glenn reports:

Sunday, May 12, 2013 10:15 am

  

Today, May 12th, I visited Bernie at Nazareth House. When I arrived at about 10:15AM, he was sitting reclined in a chair in the TV room, with his eyes closed. I knelt beside him and said his name. He said: "who is this". I said "Glenn" and he said: "would you come back this afternoon?".

Since I had just driven 40 miles, and couldn't just wait around there, I asked him if I could visit for a few minutes and he said, "Just a few minutes." He did keep his eyes open. I asked him if I could pray with him and he said yes. We both made the sign of the cross and I prayed that he wouldn't suffer pain and that God would keep his spirits up. When I was finished, he said something like "Goodbye" or something indicating he was done visiting, so I told him I'd pray for him and left, noticing that he closed his eyes again.

I was hesitant to just leave and felt that I should have asked him what he'd like me to pray for, so I went back to the TV room, knelt beside his chair and said his name. He opened his eyes and I asked him what

he'd like me to pray for. Without hesitation, he said: "peace". I then told him I was sorry I hadn't visited him earlier, was keeping up on his situation by reading Mike's blog, and that I would pray for peace for him. I gently touched his shoulder while we talked and then his forearm, to try to convey love. My hope is that he felt some love and benefitted in some way from the visit, even if it wasn't readily apparent.

On the way out, I stopped at his room (#14), met his roommate Jack, introduced myself and asked him if he and Bernie talked. He said that Bernie was very quiet and didn't talk much. I deduced that he had only known Bernie since he came back to Nazareth House a few weeks ago.

Glenn Cohen

And now, Hospice

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.

Disengagement

The nurses at Nazareth House called to report Bernie does not touch his daily newspaper or magazines. We should cancel them.

Will do. In the remote chance he becomes engaged in the future, we'll reinstate them if he asks.

Father Craig reports:

Wednesday, May 1st

Today is the Feast of Saint Philip and Saint James, Apostles, and the 12th anniversary of my ordination to the Diaconate. I wanted to celebrate the day by visiting with Father Brennan.

He is most assuredly happy to be back at Nazareth House. He remains in the Special Care unit and was in a group where the leader was telling stories...I couldn't tell about what. One of the aides was kind enough to wheel him out into the hallway so we could have a brief visit. I asked him about the wheel chair and if he was walking and apparently he is not able to walk on his own at this time.

I asked him how he was doing and he replied "not so good". I asked him to explain and he said it was hard for him to put it into words. He asked me how I was doing. That was touching. He was a bit more conversational than when I last saw him two weeks ago. He does speak very softly, just above a whisper.

We prayed together and I gave him a blessing. It was an all too short visit. He very much appreciates the prayers offered on his behalf and the love and support. Visits uplift his spirit.

cpl+

Continue?

Monday, April 29, 9:30am
In wheelchair, in lounge.

Kathleen and I have come to move things out of his old private room, and into his shared room in the Special Care unit.

I look Bernie up and there is much activity in the lounge. I can't hear him, and ask if it's ok we go to the enclosed patio.  "Good"

It was warm and the flowers were all bright. We find a place in the shade. "How are things Bernie?" "Terrible, as usual" "Oh Bernie, what is it?"  "Continue continue continue continue continue continue..." and five more times "continue." His breath was shallow and quick. He seemed agitated and spoke with his eyes closed.

Finally, he slowly reaches down and unties his right shoe and points to the heal.  "There are weights in the heal and it is too heavy to walk." His new white Rockport walkers were all he could talk about.

"Kathleen and I have come to move your things to your new room." "Ok" "We'll check with you before we leave." "Good"

Kathleen moves pictures and framed prints, all Bernie's clothes, personal items, crucifixes, and chalice.  I disconnect the telephone, cable tv and computer.  There is no room for his large easy chair or bookcase.  Most of the items in the bookcase were unread magazines of the past year. We move the empty compact refrigerator Bernie had asked for into short term storage. Four nightstand clocks were reduced to one.

It took all day and we went to say goodbye nearly 7:00pm and he was in his bed, asleep. 

We asked Alice about transferring his telephone.  She suggested we wait a few days.  "Most of the time he won't be in his room and won't be able to answer. Let's see if he wants it. Have his friends call the main number, and ask for Father Brennan in the Care Unit. We'll bring Bernie to the phone."

Friday Afternoon in the Lounge

Friday, April 26, 2:40pm
Dressed in Lounge

Kathleen and I spot Bernie across the room and he is sitting in an easy chair in conversation with a visiting priest. We busy ourselves with paperwork for Bernie and return a few minutes later.

Bernie is dozing. "How are you doing?" "Not too bad." Kathleen begins a conversation, but Bernie is confused and can't quite figure out  the question.  He complains of pain at his bottom, and we figure out he is referring to the previous sore which is being treated.

Kathleen asks if he feels confused, and he says, "Yes, I suppose so." He seems upset and we keep our conversation short.

I got a call earlier in the day and search out the nurse who called. She had reported that he was confused during the night and fell out of his bed. Deliberately the beds are lowered close to the floor each night to minimize the risk. The nurses found him immediately and gave him a brief examination and checked his temperature.  A few hours again they check once more, to find him showing no ill effects from the fall.  He seemed confused but rested the remainder of the night.

The nurses also reported he was incontinent. He has lost all bladder control. This may have been a result of a catheter for nearly a month. They believe he can regain control.

After talking with several nurses and Alice (RN) who is the administrator, all believe he should not return to his private room. The additional attention and group activities in the Special Care wing are necessary and helpful.

Next week we'll try to get his telephone transferred to his new room. We'll update the number in the box to the right.

Inner Peace, Please

Tuesday, April 23 4pm
Nazareth House, Lounge Room
Dressed, in easy chair, dozing

I sit down next to Bernie and wait for a minute. He stirs and I say, "Hi Bernie."  "Oh, how long have you been here." "Just a minute." "How are you?" "Not too bad."

Bernie sits in the lounge amid about thirty easy chairs, large fireplace, and big TV.  Most have already moved from the lounge to the dinning room, adjacent.  We chat for a bit.

Bernie is happy to be at Nazareth, but is still a bit confused.  I ask about the food, and he says he hasn't had any yet. I ask about his new room and he can't describe it or give his reaction to it.

We sit for a bit and he trembles.  "What is it Bernie?" "Oh, Dear God. Oh, Dear God. Oh, Dear God." "What would you like Bernie?" "Inner peace."  I hold his hand for a minute and he calms.  "Bernie you don't have to worry. You don't have to be anywhere. You don't have anything overdue." He settles. "Oh good."

A helper comes by with a walker and they both head off to dinner. I left before I could get a full menu but I saw a green salad with croutons and slices of turkey to start.