"When we first started our band, almost four years ago now, I longed for a textbook that would simply tell me what I needed to do, when, and where I could expect to be in one year, two years, three ..." more

Jim, the RivalsBand Member

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Hospice Stories

Why I'm in Hospice

Many of you know that I am a hands on hospice volunteer, caregiver and outspoken hospice advocate. That means I work with people who are actively dying and give talks in support of this movement. I can't even explain how or why I was called to this (as you ALL know MY background). And I'm not a particularly good person for doing it, so please no Mother Theresa story here - I'm usually scared out of my wits, bumbling and clueless, but it makes me happy, so my rewards are far greater than anything I could possibly be doing for our patients. ÝSome other rewards to being a hospice volunteer are the following:

  • You may change your life immeasurably for the better.
  • You may do the most soul satisfying work imaginable.
  • You may be able to safely express all the love and caring you hold in your heart.
  • You may change from a fear driven life to a more courageous, hopeful life.
  • For me, the most interesting aspect of hospice work is that it is NEVER static. You are always feeling something ... there is no underwater feeling and you are never sleepwalking through life.

Every moment you are with a hospice patient you are alive and experiencing. It's full of emotion and energy and there is NO flatness at all.

Nothing I have done, from three consecutive #1 singles to 14 gold records to 5 Elton John Oscar parties to cars, limos and drivers (on three continents), to backstage passes, Grammies, and MTV, and so much more, have equaled the high I feel relating, soul to soul with another human being in this type of work. Let yourself honor the authentic purpose of your true heart.

Mission Hospice

I'm proud to be a volunteer caregiver with Mission Hospice Inc. of San Mateo County. ÝMission Hospice is a Medicare-certified, hospice licensed, nonprofit organization which provides physical, emotional, social and spiritual support for terminally ill patients and their families in San Mateo County, and educates professionals, those who give hospice care and the public in the methods most effective in providing hospice care. ÝAll services are provided by professionally trained staff and volunteers.

We offer compassionate, professional care for the terminally ill and their families.

  • Trained professionals from multiple medical, nursing, home health, social, spiritual, volunteer and other therapeutic disciplines working as a team in support of your situation.
  • Expert and aggressive pain control and symptom management.
  • Emotional care and bereavement support.
  • Certified medicare and Hospice licensed programs.

We believe in living every day of your life in the best possible way, with emphasis on patient advocacy and quality of life care. If you want to know more about hospice or how it can help you or someone you know, please visit their site or I'll be happy to talk with you myself.

Hospice Talks

I had the honor of speaking about my hospice volunteer experience at Grace Cathedral in June, 2000, with Brad Byrum from Zen Hospcie and Bill Musick from Maitrie Hospice. which was webcast live and resides in the archive portion of their site. You can hear this archived talk here, on the Grace Cathedral website. and see my smiling little face!

Tuesday February 17, 2004  -  Meeting Mrs. A

I’ll never forget how the sweat started on my forehead, dampened my neck and dripped under my arms. I stood before a nondescript door. Number 532 to be exact.

I stood there nervously, fidgeting. I kept glancing down the hallway. Secretly I was hoping someone or something would come along and postpone, or somehow prevent me from putting the key in the lock, and opening the door. My fear of the unknown was palatable. It hung over me like a shroud, creating a lump in my throat that threatened to gag me.

We have a saying in Hospice. ”When one door closes, another opens... but the hallway’s a bitch.” Well, guess what. I was in THAT hallway.

Shifting uncomfortably from foot to foot, I asked for the courage to be enough. I asked for the courage to open the damn door and just walk in. I asked for the ability to walk in and say hello to a woman I’d never met. Mrs. A.

Mrs. A was 90, bedridden and suffering from dementia. I knew she couldn’t talk or feed herself or even turn over in bed. But what if she was a crazy woman ranting and frothing? My nightmarish imagination was starting to run away with me in alarming fashion.

I tried to remember what our chaplains at Mission Hospice had reminded us. Examine how YOU are feeling and deal with YOUR feelings. My feelings were all over the map. Turning around and walking away seemed a like a very good option. Then I felt ashamed at myself for feeling like such a baby.

I slapped myself back around mentally and toughened up my resolve by reminding myself that I could do this. I was a trained volunteer for chrissakes. If it’s true there are no coincidences, then I was standing before this door for a purpose. The immediate purpose was to walk through that door and care for this woman who needed me. That simple. That black and white. That immediate.

Touching my hand to my heart, I took a deep breath of resolution. Putting the key in the lock, I turned and opened the door to a nicely furnished studio apartment with alcove. The bed was back in the left alcove, so I could not immediately see my patient. It took me three or four tantalizing steps of suspense to turn the corner and actually see her.

And what a sight it was.

A beautiful, aristocratic woman was sitting propped up in a standard hospital bed. She had a full head of impossibly thick, luscious white hair, stylishly done. More phenomenal were her clear, piercing blue eyes. They surveyed me coolly with equal amounts of curiosity, fear, wonderment and total detachment.

She was a very living presence. That surprised me. She may have been physically helpless but this was no powerless entity. Despite her near skeletal body, she retained an air of innate refinement. Oddly, I felt like an unworthy intruder who should kneel and beg admittance.

She was alone in the apartment of course. Although this is not a normal situation for a hsopice patient, her children were determined that she remain in her condo, as she had wished. She had caretakers 24 hours a day, but they came and went, after feeding, and changing on her. They had left and would return later to check up on her. The bedclothes were clean, her nightie fresh, the hospital rails up, the TV on. But alone. Totally alone, unmoving, silently playing with the sheet, waiting on an interior timetable.

A bit stunned, I walked over to the bed with my books. I had taken the ancient anthology of world poetry thinking I could find some old time verses to soothe and possibly entertain her. I reached for her hand. Her grip was like a vise. She was unexpectedly strong, and quite unwilling to let go. I had to literally pry her fingers off. That was my first clue that she was not ready to let go, not ready to be taken out, not READY dammit.

It reminded of someone whose world has gone completely askew, tilting out of control. They are so off kilter they think they are falling off the world. So they hold on to anything with this almost superhuman strength which belies the frailty of their physical bodies.

That was Mrs. A. It was like those dizzying rides at the county fair. Only her’s wouldn’t end and she couldn’t get off. She was literally hanging on for dear life.

Peering closely, I looked at these remarkable hands.

Her hands held none of the decay of the rest of her body. They were bulky with their physical presence. Her fingers were exceptionally long and bony. For as strong as they were, they still held a fleshy softness. Her nails were hard and polished neatly. The palms, warm and moist, hummed with a different pulse. Her hands seem assured, vibrant and held a certain ageless confidence. These impossibly elongated, strong fingers wound around my hands in a tight wrap. I wanted to sculpt them.

As I sat next to her holding both her hands in mine I thought how her hands so fully defined a life. They were a living testament to someone’s soul. Holding Mrs. A’s hands was like peeking into someone’s life. I felt like a voyeur but I couldn’t NOT look.

We stayed like that a long time. Hours really. My hands stayed wrapped around hers. We just touched and absorbed each other’s presence. Waves of emotion would wash over us. I could not do anything but hold on and grip her tightly back.>/p>

Sometimes I would try to read some of the ancient poems of yesteryear. Or I would try to sing softly. She would moan in a fretful way and I would stop. She seemed to moan not so much from pain, but some private distress I could only guess at.

Her eyes wandered from fear and terror to wonder to unseeing anything in our known world. But it was obvious to me she was looking intently at something beyond my grasp of understanding. It took me weeks to get her to relax in my presence and let her eyes show me her true feelings of relief, interest, pain, tenderness and plain old simple tiredness of living.

I felt this was my first real benediction. I left that day, three hours later, exhilarated, drained and both more alive and more questioning than ever.

My journey had just begun.

Tuesday March 19, 2002  -  The Spoons

Annie Bramlett was the first person I ever saw as a Hospice Volunteer. Needless to say, I was a nervous wreck. Would I know what to do? Would I be enough? Would I run away in horror?

Let's face it- I was not your normal candidate for hospice work. I had stumbled into hospice looking for a more meaningful existence after a lifetime of working in that most disposable of businesses, rock and roll.

It was a good stumble. I had unintentionally fallen into a group of people with whom I was immediately comfortable. I recall feeling after that first volunteer meeting that I had "finally I've found my people." It didn't hurt that one of the women looked so stylistically like my deceased Mom that it was actually comforting.

This positive start led to my volunteer training and study and now here I was, ready for my first assignment, Annie Bramlett.

Meeting someone who was dying was intimidating enough. (Did they have an odor, a look or maybe a presence of death about them?) But then there was the matter of Annie's personal biography. She was a self made woman who moved from Oklahoma to San Francisco in the 20s, when women just didn't make those moves. Especially a divorced, single Mother with a small daughter. She went on to become the office manager for the local bureau of a national paper, retiring there 40 years later. In the course of her life she became a world traveler, sophisticated and smart. She was my kind of role model, and I hoped to impress her.

I drove to to the high rise retirement community, parked and went inside the lobby. I called up to her room. She told me to come on up as she had been expecting me. Each step toward her door was portentous with anticipation for me.

I had to walk into the room myself, since Annie was resting her easy chair. She was suffering from terminal lung cancer. More obvious though was her "macular degeneration". Macular degeneration is a certain blindness that afflicts mostly older people. It is a particularly cruel blindness that robs you of all but your most peripheral vision. As Annie lamented on more than one occasion, she could not see her darling grandchildren's faces. When she looked out of her eyes, all she saw was a large black spot. Lightness and darkness were discernible around the edges, but no clear images. Torturous.

But, this small bird of a woman, 81,still had her Oklahoma grit. Instead of having the cool demeanor I associated with sophistication, she was down to earth and self deprecating. She had an earthy, sly humor and didn't stand on ceremony. And although she welcomed me warmly, I sensed a distinct air of loneliness.

She lived in a studio apartment with a sink, small refrigerator and hot plate. A DNR was posted to the fridge door. There was a full bath. One small closet held her belongings. The kitchen had built in cabinets above and below, which also held her things. There was a single bed, her wheelchair, a recliner, one casual chair with cushion and a low table and lamp. A TV was on a stand near the bed, next to an oxygen tank. There was a transistor radio on her table on low. She liked to listen to ball games. There was also a tape player and recorder. She now listened to books on tape, since she couldn't read. There were windows on the north wall overlooking a park.

On the wall were pictures of her family- her daughter and son and her grandchildren. There was also a wall rack of specially designed, enameled spoons that she had collected on her many travels...the Alps, China, Grand Canyon, Florida, Paris, Roma.

I was a bit more stunned by the meager surroundings than her condition. 81 years reduced to THIS? I had always heard people speak of others in " diminished circumstances" but I had never understood what it meant.

I wrote about this later, in my journal, wrestling with this same question and trying to understand the diminishing nature of life. Ultimately I decided only the outside appearances and circumstances were diminished, not the person. Annie was very much alive and vibrant, if somewhat handicapped. It was a valuable lesson for me to learn.

Annie taught me well about how a person can be reduced to paltry surroundings but retain a strong sense of self. She had absolutely no self pity. Her life was just what it appeared to be, pragmatic and sensible. Except for the pictures of her grandchildren and her spoons, she had few attachments. She got meals brought up three times a day from downstairs, had a home health aide come in every day to check on her, change the sheets, help her shower and do the laundry. It was clean and familiar. She had her hair done every week. She had lived there for seven years. She accepted her life.

Although she couldn't see her grandchildren's pictures, they meant a lot to her. She adored her grandchildren and regretted them moving to Denver with her son. "So far away"... she would fret. Her daughter who lived locally and was responsible for her care, visited every week. But the daughter had no children and her relationship with her Mother was somewhat tense.

The daughter resented her Mother for all the years she worked and left her alone. Annie would argue that she had no choice but to work. She said it had never been her decision and she would have given anything to have been able to stay home. She actually remarried in San Francisco in order to give her daughter a father and so she could stay home to raise her. But she found out too late that her husband was a lazy bum. By then she was pregnant with their son. So after his birth, she was forced to return to work. After that , she divorced for the second time. For the remainder of her life she said she had little to do with men, finding them useless.

As she continued working, her situation became more settled. As her kids became grown, she took to traveling around the world with another woman friend. Cruises and travel. Australia, Europe, the Caribbean. Her friend loved comfortable surroundings and to dress up and socialize. Annie had a stronger sense of curiosity and was less demanding of her accommodations. In respect for each other, they would divide the trips accordingly. For every trip to the Outback, there would be a trip to the George V in Paris. She regaled me with wonderful stories of their adventures. Each spoon held a fond memory.

Although Annie didn't look necessarily look sick, she did indeed need a wheelchair. The lung cancer had left her too weak to walk anywhere, except around her small room, holding onto furniture. Her blindness, aggravated things and reduced the scope of her life even more. But she didn't let any of this stop her. She enjoyed being social and always had a quick retort. She liked to get outside and do things. I quickly became accustomed to loading her up in the wheelchair and wheeling her downstairs and out the building for adventures.

The first time I tried to put her in the wheelchair was no problem... except I couldn't get the footrests onto the chair. That's very bad for the patient. Without the footrests, they have to hold their feet up to keep them from dragging. A tiring exercise in the best of circumstances. I finally put the heavy metal foot rests in her lap, maneuvered the tank-like wheelchair through the two fire doors to the elevators, and got her down to the lobby. There I enlisted the help of the maintenance director. Boy did I feel like a fool when I found out how easy it was to put on the foot rests. It was just a matter of knowing. (I guess I was asleep during that class in training). You can bet I'll never forget again.

Once I got the hang of pushing the wheelchair, we went out, almost every time I came to visit, which was weekly. Our downtown was just a short distance from her door. It was a lovely little community of shops and restaurants. We'd go to lunch in fancy and plain restaurants. Everyone was always quite accommodating. She was never really hungry, but simply enjoyed hearing conversations, traffic, and the bustle of everyday life. Sometimes we'd just have coffee and a cookie, or "window shop".

My favorite times were when we wheeled through Central Park, which actually abutted her building and had beautiful winding paths. The children's playground was a particular favorite of hers. She couldn't see the children but she could hear their squeals of delight. It made her very happy. She could also smell the flowers, particularly in the Japanese Tea Garden and the Rose Garden. Those were favorite moments, sitting quietly together, in the park's embrace.

Since life moves inexorably on, Annie inevitably deteriorated. Her interest lessened in current events, outside activities or food. When I took here down to get her hair done in the old-timey building beauty parlor, clumps of hair would fall out during washing.

More importantly though, she had gotten so weak that she began to worry about falling. This fear was especially acute during the night, when was alone and had to go to the bathroom. She started awakening with severe panic attacks and sometimes stayed awake all night, afraid and fretful.

She began discussing alternatives with hospice for more comprehensive care. Her two alternatives were either getting a full time attendant and remaining in her apartment, or moving into a skilled nursing facility. For reasons unknown to me (but most likely the cost), she chose, with her daughter's input, to go into a skilled nursing facility, aka a nursing home.

I had been informed by my hospice that she would soon be leaving for the nursing home. At that time that meant leaving our care, although now those rules have changed. I went to see her, for what I clearly thought would be the last time in her studio apartment.

We talked about her going into a nursing home only elliptically. She would deny making a choice and say she didn't know what would happen. She imagined her daughter would just show up and take her away with no advance notice. While it was obvious to me it had been discussed thoroughly, it was unclear to me who made the final decision. However with her night terrors and the real fear of her falling and injuring herself, she certainly couldn't continue living alone.

She said, "I wonder what will happen to my spoons?" I wondered too, but was too naive and lacked the confidence to know how to speak to that subject directly.

We gathered up our things and went to Central Park. It was a picture postcard summer day. We sat in the sun and absorbed it's healing warmth. I'll never forget the sweet simplicity of sitting with her silently. For a moment, there was no future and no past, just a perfect present. We sat suspended in time, savoring and absorbing the moment with all our might. I was sure this would be the last time she would be in the park. I wanted to infuse her with all the memory, warmth, smells, and sounds that it held. The children's distant voices were a soft constant in the background. The sun baked our faces. Flowers scented the air. The birds sang.

I was afraid for her going to the nursing home. I was afraid of her losing her independence. I was afraid of losing her! Neither of us wanted to leave that spot. We both seemed to understand, in unspoken fashion, things would never be the same. It was with great mutual reluctance, that we finally headed back.

On the way back into the retirement community, we met a friend of hers. The friend was crying and rushed up to Annie in great distress when she saw her. Medicare was trying to collect $900 from the woman because she had fallen and called 911. It was not covered under her policy so they wanted her to pay the cost of the emergency 911 call. She lived on a fixed income, as did most every one in the retirement community. She was in tears." How do they expect me to pay this?" she sobbed. "I Have no money. I went to their offices and no one would listen to me." The two old friends held hands, both weeping, tears running down their faces. Neither women knew Annie would probably be gone from the residence community within 24 hours.

I tried to give them some privacy. But I couldn't help overhearing the woman tell Annie, "They say life is just a bowl of cherries. But when you get old it's just the pits. The real pits. No one knows, do they Annie?"

Annie and I were both shaken from this encounter and it dampened our spirits. She felt very sorry for her friend but helpless. We completed the trip home, through the lobby, up the elevators and to her apartment, silently. She was still quiet when I gathered my things to leave. I told her I would be in touch, no matter where she went. I left her sitting in her recliner, lost in private thought.

Though our agency discouraged personal visits to patients who had left our service, I decided to quietly continue visiting her in her new location. The nursing home she had chosen had a very good reputation. Good reputation or not, I was not prepared for what I encountered when I went to see her. Many, many old people tied in wheelchairs and just sitting in the hall, staring vacantly. The more able bodied residents ignored the less able bodied residents. It was disconcerting and uncomfortable. .

I found Annie's room. She had a huge bruise on her forehead. She had tried to get out of bed during the night to use the bathroom. They had put the rails up on the her bed. She was not used to rails and tried to climb over them and fell. She was now confined to bed and in diapers. She had never worn diapers before. She was humiliated.

She was happy to see me, though a strong element of desperateness accompanied it. She grabbed my hand and immediately whispered "I don't like it here. I want to go home." My heart sank. That was exactly what my Mom had begged me, when she wanted to leave the hospital. I had no power to save her or Annie. She was so pleading. She repeated the request. I got that familiar feeling of helplessness.

Resignedly, I just sat with her awhile, absorbing the sights, sounds, smells of the nursing home and trying to put positive spins on the situation. I joked and held her hand. I told her things would get better. I told her things would be okay. I felt like a liar saying it, but what could I do?

Eventually things did even out a bit. Everyone liked her because she never took herself seriously and cracked jokes. The workers seemed good, but you lived on their schedule, not yours. Patients were basically regulated by pills to wake up, eat, and go to sleep. I once found Annie out in the hall, tied to a wheelchair, all but unrecognizable. She had been given her morning shower and parked out in the hall, while they continued on with the other patients. Her hair, still damp, hung lankly along her down turned face. She looked utterly defeated to me in that moment.

I got into the habit of stopping by to see her after I would go to my horseback riding lesson. It was on the way home. I would stop and get her a milkshake, one of the few things she would still eat.

I would stroll in, wearing my riding apparel and tall jumping boots, a bit sweaty, with my hair in total disarray. I knew it didn't matter to her, since she couldn't see me but God knows what the other people thought when I clomped into her room. Once I arrived to find her daughter already there. We had both brought milkshakes. There was a subtle feeling of competition between us.

The woman in the bed next to her was in terrible shape, possibly a major stroke. Although she couldn't walk or talk, her family and husband were very loving and were there often. Annie paid them no attention and tried to distance herself as much as possible. She may be dying of lung cancer but she wasn't that bad.

Finally one day, I stopped in and found her very tired and distracted. She was wrapped up tight in her sheets, mummy-like. She didn't want anything. She really didn't want to visit. I stroked her brow and told her I loved her and was thinking of her. She was surprisingly forceful when she said to me, "Don't worry about a thing, Dear. Don't worry. Just don't worry." I had the strangest feeling that she was blessing me.

Several days later, I stopped in again...the bed was empty and made up. I saw the daughter of the women in the next bed.

"Didn't they tell you? She died two days ago. She had a terrible time at the end, but went quickly. I told them to call her family, but nobody came."

When you think about people dying and their lives being extinguished, many assume that you don't want to be there to see it or witness it. But personally I would have liked to have been there with her. I was sorry she died alone. She meant a lot to me. It was my first hospice loss.

There was no funeral or service and I never saw the spoons again. I had very little closure except the fact that we had shared life. And in the end, that has proved to be enough for me.

I've discovered now, that no matter how brief, it's these glimpses into someone's life that honors the living. This is the living testament. When we are called to bear witness, I think this is the witness the Bible is talking about. Witnessing a life.

It's been more reassuring more than depressing. Choice is freedom. We can all make a choice to be kinder. Annie Bramlett is someone I'll never forget. She was my first real kindness. She was very kind to me.

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