Sunday, June 17, 2007

Site has moved to

Last Day of Winter & our new blog / website can now be found at will remain to archive your comments - all previous posts have been imported to the new site.

Thursday, June 23, 2005

When a Child Loses a Parent

As complex and wrenching as loss and grief are to us adults, it is even harder for children. Part of this is because children just don't have the same emotional make-up that adults have. Kids grieve deeply, but often their grief does not present as sorrow in the way that adults define sadness. Very often anger, aggression, anxiety, restlessness and attention seeking behaviors of many kinds are vehicles by which a child expresses her grief. And don't forget that a child's personality is still developing. Many times the words we choose in speaking with a child whose mom or dad has died, will make a difference in the way they understand what has happened and in the way they experience the world around them.

A child is vulnerable—helpless in the world. One of her strongest emotional responses to the death of a parent is stark terror: “What will become of me?” Give immediate and complete reassurance that you will keep her safe. Children do not share the worries that adults carry in their minds. Rather, they want to know where they will sleep tonight, and who will tuck them into bed and listen to their prayers. They want to know that someone is at the helm and that the operational components of their world are going to be predictable. Tell them specifically what will happen: “You’re going home with Aunt Jenny tonight. You can sleep in our bed with us. Tomorrow we’ll have Cheerios.” And tell them you love them.

There are a lot of things you must say to comfort and reassure the child, but there are also some things that we urge you not to say. They include phrases like:

· Jesus (or the angels) came and took Mom.
· She just went to sleep.
· She went away (or passed away).
· God wanted her in heaven.
· She’s in a better place.

These things may be true in a spiritual and emotional context, but children think very literally.
Rather, tell the child that her mom died. She may not know the meaning of the word, but she does need to know that it is far different from taking a trip, going away, or falling asleep. We all want to share religious beliefs with children, as faith traditions are a great source of comfort. But children need to know that God does not come into bedrooms and take people away. Children need to know that God isn’t in the business of snatching people away while they sleep—or they may suddenly fear that this will happen to them. They must also know that a mommy would not leave her child to go anywhere, no matter how nice it is. Emphasize also that death is nothing like falling asleep.

If the child’s parent died after a prolonged illness, remind her of the series of losses and physical changes that the parent had to endure. For instance, you can explain: “Mommy’s body didn’t work anymore. She couldn’t eat or drink, open her eyes, or even sleep and have dreams. She couldn’t breathe, and her body died.”

You may feel that “death” is a harsh word to use with a child, and the truth is that children do not understand the word. But they need to know that something has happened that is different from their everyday experiences, otherwise the world around them becomes unpredictable and threatening. Will God come for Daddy too? What if Aunt Jenny goes to sleep and doesn’t wake up again? Death, however mysterious and scary, should not be confused with everyday occurrences.

Children grieve in their own ways, as best they can. They do not have the same ability to rationalize or understand as adults, and so their pain and grief is special. Be open to all sorts of behavioral changes in children following the death of a loved one. And there is one thing you must do: you must continue to love them and tell them that you love them. They need constant reassurance that they will not be abandoned.

Griefbusters is a wonderful group of dedicated professionals and volunteers who can help with a child’s grieving process. Most hospices will know about it, or employ programs of their own to assist with the stages a child must endure. Don’t ignore the needs of your child, even if they are hard to understand and decipher. Acknowledging that this is the biggest life change possible, you need to allow a child to go through the natural process of grieving in his or her own unique way, and do whatever you can to help with healing.

Saturday, May 07, 2005

Painful Losses and Powerful Blessings

From Self-Care to Dependence

Every caregiver knows that the day will likely come when your loved one will no longer drive, will have to be in a wheelchair, or might be bedridden. You might move a hospital bed into the house and place a commode nearby, or perhaps a bedpan is all you’ll need. These steps indicate that your loved one depends on you, other family members, friends, and caretakers. You’ll work together to prepare meals, do the dressing and bathing, and perhaps even toileting. As your loved one becomes increasingly more dependent upon those who care for him, you may witness changes in his thought process, alertness, and moods.

Being dependent, needing assistance from others for dressing, bathing, and attending to the most personal and intimate aspects of personal hygiene can be humiliating and overwhelming. How can this be a time of healing?

Marcy was a nurse in a Midwestern hospital. She worked the swing shift in the emergency room, raised three energetic daughters during the day, and slept whenever she could. Marcy’s husband, Sid, was a carpenter. He was a kind and hardworking man. Over the years, their dual career and split-shift lifestyle had taken a toll on their marriage. By the time the children were raised and gone, Marcy and Sid were more like housemates than life-mates. They shared the house and nodded pleasantries to each other as they crossed paths, but lived totally separate lives.

Seven years ago, Marcy was diagnosed with breast cancer. She underwent a modified radical mastectomy of her right breast. After surgery, Marcy undertook a grueling course of chemotherapy followed by radiation. It was a difficult and arduous treatment.
Marcy’s strength had always been in her competence. Even in her debilitated physical condition, Marcy managed and supervised her way through. She organized friends into car pools that transported her to therapy appointments. She kept a detailed notebook with questions for her physicians, and painstakingly recorded her changing condition. She researched all the current literature on breast cancer. She took charge of every aspect of her treatment and recovery. We used to joke that she didn’t so much recover, but instead smacked the cancer into submission.
On the fifth anniversary of Marcy’s remission, we celebrated at a luncheon in suburban Chicago. Pam remarked on her courage during the ordeal.

“You were so amazingly courageous,” Pam said. “A real example for the rest of us.”
Marcy looked incredulous. “Brave? I wish I’d been really brave. I wish I’d been brave enough to let somebody—anybody—know how scared I was.”

This revelation took Pam by surprise.

“Surely you told someone,” Pam said. “I mean, Sid knew, didn’t he?”

Marcy shook her head. “Sid probably knew less than you did. I used to get scared at night. I used to cry when I went to bed. But his room is on the other side of the house. He never heard me.” She took a sip of wine and leaned over the table toward Pam, whispering, “You know, he’s never even seen the mastectomy scar.”

Late that summer Marcy had a recurrence of her cancer, with lesions in the left breast. Tests showed widely metastatic disease with lesions in the bone, in the lung, and in her brain. The doctors told her that the cancer was spreading very quickly. She was given a prognosis of less than six months to live.

Marcy’s symptoms grew worse following her diagnosis. She developed excruciating pain in her back that could only be relieved with strong narcotics. Her strength waned. Sometimes it was too difficult to get out of bed, even for meals. Finally, hospice care was ordered.

One autumn day, Marcy was lying on the couch, staring out the window at the falling foliage. “Do you remember my remission party,” she asked Pam, “when I told you how scared I had been during treatment? You didn’t tell anyone else, did you?”

As Marcy continued to decline, we ordered a hospital bed and placed it in the living room where the couch had been, so she could continue to enjoy the view of the autumn colors. We put a walker next to the bed. With help from Sid, she was able, for a time, to get to the bathroom. As her strength declined, she became unable to walk the short distance to the bathroom, even with Sid’s help. He ordered a bedside commode. Sid had to empty it, and as her disease progressed, he had to help her on and off the commode. Finally, Marcy became completely incontinent.

Each of these changes and losses was met with struggle, resistance, and an overwhelming sense of personal degradation. And in each instance, Marcy lost the battle. With each defeat, she had to relinquish that piece of her autonomy, of her perceived dignity, of her attachment to authority in her life. It was a time of great pain and personal chaos.

Yet, concurrent with all these losses, in the midst of this struggle, subtle changes occurred between Marcy and Sid. It began with the walker. Sid would help Marcy out of bed, watch as she made her way through the living room, and sit patiently outside the bathroom door. Once in a while, he would tap on the door and ask, “Everything okay in there?” When the commode became a part of their lives, Sid would make small talk as he emptied and returned the container to her bedside. It seemed to ease her discomfort, and his own.

Once in a while, he would sit at her bedside and they would talk, sometimes for a few minutes, and other times long into the night.

When Marcy became incontinent and bed-bound, her care needs changed again. A home health aide came to assist with personal care. One afternoon, a few days before Marcy’s death, the aide arrived at the house to find Marcy in a particularly upbeat mood. She was smiling and joking, more relaxed than she had been since the diagnosis. The aide made her a light lunch, which Marcy ate with enjoyment. Then the aide offered to change her sheets and give Marcy her bath.
“You can change the linens,” Marcy told her. “But I don’t need a bath. Sid bathed me this morning.” She blushed a little and concluded, “It was really nice.”

Marcy died the following Sunday afternoon. Sid and her daughters were at her bedside, holding her hand as she left.

Professional caregivers share a deep understanding that it is an honor and a blessing to care for the dying. It allows us to experience ourselves as competent, compassionate, and giving.
On the other hand, the patient is often fraught with feelings of fear and loss. Relinquishing authority and autonomy causes the death of and individual’s perceived sense of self. Yet in this letting go, the dying begin to see clearly what and who they have always been.

A close friend of ours, who is a Hindu, gives this advice: “When Shiva, god of destruction, is knocking at the door, it is a wise person who opens the door and welcomes him into her life.” She elaborates, “You must understand that if Shiva is at your door, he will come in, invited or not. How much easier it is to make him welcome; how much wiser to elicit his friendship.”

In losing her struggles, Marcy finally allowed Sid to care for her. His care and concern made her feel safer, and it reminded her of another time in her life: a time when she had fallen in love with Sid. She remembered how happy she had been in those days—how special she had felt as a young bride, and how safe. In caring for Marcy, Sid was also reminded of how much he had loved her in the early years of their marriage. He had seen her differently then. He had seen her as beautiful and soft and delicate. And he remembered how much he had loved to touch her. Their late-night talks brought them close again, and reminded them of who they really were to themselves and to each other.

Thursday, March 31, 2005

Terri Schiavo and the Right to Choose

The story of Terri Schiavo has been on the forefront of our national consciousness for several months. Terri's death today marks the end of the longest and most heavily litigated end of life case in American history. Fifteen years of law suits and counter suits. Bitter accusations against people who once loved and cared for each other. Relationships shattered. Hearts broken. And even as Terri is finally given rest, the clamor around her intensifies! Part of the reason for this is that, despite fifteen years in the courts, we still don't know what Terri would have wanted under these circumstances. Terri never completed an Advance Directive for Health Care. She never named a Power of Attorney or a surrogate decision maker (Thus, the role went to her husband, who is her next of kin). Terri never even had the conversation with her family about her end of life preferences.

This tragic case has caused many people to realize the importance of communicating their feelings, beliefs and wishes for their end of life care. The subject of death is finally acceptable dinner table conversation! And we urge all of you to tell your families and loved ones what you would want if you were in Terri's situation. Will this be easy? No. It is very difficult to discuss these things. And very uncomfortable. But if you are a person who does not want any extraordinary measures taken it is far less difficult than fifteen years on a feeding tube. And if you would like artificial nutrition and hydration provided, asking for it now will be a lot easier than asking for it when you can no longer speak. LET PEOPLE KNOW WHAT YOU WANT.
And let them know NOW.

You may also find it helpful to appoint an agent or surrogate to carry out your healthcare wishes if the time ever came when you couldn't speak for yourself. Be sure this person thoroughly understands your wishes and that he/she will carry them out as you instruct -- NOT as he or she might choose.

And put it in writing. All states recognize Durable Powers or Attorney for Healthcare or Advance Directives. The forms are readily available at your local hospitals or hospice agencies. Many attorneys provide Advance Directives in wills and other legal work. However, you do not have to hire an attorney to execute an Advance Directive. You simply need to complete the paperwork and, in some states, have your signature notarized. The cost of a Notary is usually less than twenty dollars and some banks provide this service free of charge for their customers.

This is the time. Do it. Get it done. If you need help locating an Advance Directive form, write to Pam or Jerry through the email links on this site. Good luck and get going ...

Monday, March 14, 2005

The Night My Father Died

Many people have asked over the years why I decided to go into hospice social work. It is often a difficult profession and sometimes acutely painful. In searching my heart for reasons and motivations, I keep returning to my father's death when I was a young woman of twenty-two.

My father was a Merchant Marine Captain during and after World War II. He was gone a lot of the time, and was alone most of his life. But he was the quintessential officer, a ship’s Captain. His whole life evolved around the fact that he was The Captain. This was his personage, his existence, and the source of his strength and also his weaknesses.

My father died alone in a small room at the end of a hall. The whole family was home that night. My mother was asleep in the room next door. I was at the kitchen table playing Monopoly with my husband and my aunt. No one was with my father as he took his last breath. No one knew if he was frightened or in pain, if he struggled, or went gently. It was not from lack of love that my father met his death in heart-numbing isolation. It was simply the culmination of escalating fear and careening ignorance.

My mother had called me months before. “Your father has cancer,” she said. After many months of increasingly unusual behavior, my father had been diagnosed with a large brain tumor. Surgery was performed that afternoon.

The doctors explained that my father’s brain tumor was not a primary cancer, but rather a metastasis from his lungs. The cancer was widespread throughout his body by the time it was discovered. My mother turned to my brother and me and said very simply, “We will not discuss this with your father. We will not say the word ‘cancer’ in his presence. We will go on as if nothing has happened.”

And so we went on as if nothing had happened. Except, of course, for the changes. My father went to daily radiation treatment. We all managed to abstain from
ever using the word cancer in my father’s presence. And my father accommodated us by never using the word cancer in our presence. And so the word was effectively
Eliminated from our world--except for the large sign above the door of the Cancer Center where he went for his daily treatments.

It is impossible to block one word from our vocabulary. Words carry meanings and concepts, and it was the meaning of my father’s illness that we were all colluding to deny. The absence of speaking is silence. And for every word unsaid and every thought unspoken, huge gray slabs of silence were laid between us like the stones in Frost’s “Mending Wall.”

Before I built a wall I’d ask to know
What I was walling out or walling in
And to whom I was like to give offense.
...Something there is that doesn’t love a wall
...That wants it down.
--Robert Frost

Spring came and my father planted roses on the side of the house. He spent long afternoons resting on the couch with my infant daughter cuddled against him. I don’t know what his thoughts were as he whispered into her tiny ears. I don’t know what he wanted me to know or if there was something special he wanted me to remember about him. I don’t know if he was in pain. The silence had won. We were strangers to each other.

My father died on a chilly November night. My mother had called and said to come and bring clothes to stay overnight. She did not say why, and I did not ask. My father was lying in a hospital bed that Mom brought to the house. He was in the last bedroom at the end of the hall. He could not see out the window from the bed. He could not see the roses he had planted. He could see little more than the ceiling and the walls. I’m not sure what he saw that day. His eyes were flashing about, unfocused. He was shaking terribly. He could not talk. I sat at his bedside for a few minutes, holding his hand and trying to find words to say. My mother became very upset and insisted that we leave the room “Your father needs his rest.” Even then, I knew it was a peculiar thing to say. I checked on my father from time to time throughout the afternoon and evening, but I never stayed long at his bedside. If I remained with him for more than a few minutes, my mother would come for me.. “Your father needs his rest.”

About eleven o’clock I lost the Monopoly game and went to check on dad. I remember pausing and listening for his breathing. I didn’t hear him breathing… Or did I? I paused three or four times before I found myself standing in the doorway to his room. His chest didn’t seem to be moving and I still couldn’t hear his breathing. I walked very slowly into the room, watching and listening for any sounds of life. There were none. The silence we had placed between us was thundering. Even the walls were throbbing.

On this site, you will see many stories of triumph over fear and isolation. Stories of people who pass peacefully in the arms of loved ones. Stories of people who share their journeys and who find meaning and resolution at life’s end. But for me, the real impetus for this site and for my life's work came from the death of a man who was not able to do any of these things. Who was not allowed to voice his sorrow, his pain, or his fear to any of us. A man who walked in his path in stony silence and who died alone in a small room at the end of the hall. More than anything else, this is my apology to him.

Something's Lost and Something's Gained

Losses Come Early

If I can keep this pain alive
the outrage will sustain the hope
and I’ll survive.
But if I learn to softly sigh
at your indifference,
then I’ll die
--Carrie Hyde

The changes and losses brought about by declining health include social and financial losses, as well as loss of family role and changes in relationships. Death is often perceived erroneously as a specific moment in time when the body’s processes cease. The last heartbeat, the final breath. It’s true that the end of life is a dramatic and defining passage—but it usually doesn’t happen in a matter of moments or even hours. Rather, death is an event, like birth. And that makes the process of dying more like the lengthy process of growing.
Taking this idea to the next step, consider that when you came into the world, you had to develop the knowledge and skills necessary for survival. You learned to walk, communicate, control some of your bodily functions, and focus your mind. You saw the world as a fascinating place. You engaged with the world and with those around you with unbridled enthusiasm. Everything was wonderful.

The skills you developed, the relationships you formed, the gratification you took in your achievements all served to encourage your attachment to the world.
Dying is the same process—in reverse.

Your loved one will lose power and influence in the world. He will lose many symbols of his achievements. He will lose many family and social roles, some very cherished. He will eventually lose the relationship to his body. We will talk more of this in the season of October & November.

Each of these losses and events cause your loved one to withdraw from physical life, to detach, to divest. It has been said that all of the world’s pain comes from holding on to that which must be released. In the normal process of disease, the moment of death is preceded and in some ways, defined by this series of smaller, cumulative losses, each one serving to loosen one’s hold on life. Remember this concept and hold it in your heart as you consider the range of losses your loved one must endure until he takes his final breath.

Loss of Social Role

As the process of dying unfolds, more and more energy must go into maintaining physical homeostasis–the body’s innate urge to maintain healthy balance and ultimately, life. Very quickly, few energy reserves remain. Activities your loved one once enjoyed must be relinquished.

As illness chips away at his energy, your loved one’s place in the world becomes smaller and more uncertain. Progressively, he may retreat more and more from the external world, perceiving himself as a smaller presence in that world. Sociologists term this social death.
Throughout life, most people form strong social bonds with friends, extended family, at work, in church, with school chums, and with people no one else even knows about. All of these social attachments will be severely strained. Some people can cope well with the issues surrounding dying and are sources of great support. Remember that people are different in their abilities to cope with these issues. Keep the following in mind:

· Many people are afraid of death–their own death and that of their loved one. They may not be able to be there for their loved one in the way they or the loved one had hoped. This is not a reflection of their love (or lack of it). It is only representative of their abilities and limitations. Remember that they too have to deal with this loss. Sometimes there is more than you know going on, and they are not particularly willing to share with you. But they want to participate in the caring for your loved one and their friend on their terms, as much as they can.

· Many of your loved one’s friends want to help, but don’t know what to say or how to act towards you as the caregiver. Do you want to talk about the illness? Would you rather be distracted? The truth is that your wishes, as the caregiver, about this may change daily–even hourly. You will have to let your friends know what you need and that your needs and those of your loved one will change throughout this experience. The most important quality they can bring to this situation (besides their love) is their willingness to be flexible.

· Some people are not talkers. Some people are chore-oriented. They can drive your loved one to the doctor, help with the laundry, bring food and walk the dog. But they can’t always articulate their feelings well. Their gestures are the evidence of their love and caring. It may have to be enough.

With that said, the sad fact is some friendships may fall away when your loved one is dying. They may not be able to cope and may choose to abandon the friendship. None of their reasons, however understandable, can mitigate the pain of a friend’s abandonment. This is a tough situation for everyone.

Finding Friendships at the End of Life

Be alert, too, for the miraculous friendships that have been there all the time. Sometimes only a crisis a large as death can uncover a loving relationship that has gone unacknowledged for years. There are Angels among us, as Leonard learned just in the nick of time.


And then a strange thing happened.
For where the tear had fallen,
A flower grew out of the ground.
--Margery Williams

Leonard was a quarrelsome gay man who lived in a tiny studio apartment in the North Beach section of San Francisco. He was prideful. He was fastidious. He was opinionated. Sometimes he was a pain in the neck. He was always entertaining. Leonard was an interior designer with a flair for colors and a special love of antiques. His apartment, though small, was beautifully appointed. He had lived in the same art deco building for over thirty years.
When Leonard had been a young man, new to San Francisco, he had been prominent in the burgeoning gay social scene. He hosted intimate dinner parties for his friends in the arts and the theater. He had “partied his way through the seventies,” with a dizzying number of sexual and romantic partners. He had never connected with a permanent life partner. “It never seemed important,” he said.

In the mid-eighties the sparkling lifestyle of San Francisco’s gay community came to a halt. The specter of AIDS had cast a shadow of sorrow and pain and great fear throughout the city. The bathhouses closed, parties stopped, the bright lights and burlesque charm of the Castro District began to feel garish and desperate. Gaunt, wasted men haunted the sidewalks. AIDS hospices sprang up throughout the City.

The conversations in cafes were hushed as men spoke in whispers about T-Cells, AZT and medical marijuana. By the time Leonard was diagnosed, he already had full blown AIDS.
We would sit in large antique rockers in Leonard’s front window the spring of 1991. We sipped Earl Grey tea and gossiped about the people who passed the window on Broadway. Occasionally, Leonard would share some tidbit about his life.

Leonard’s health was failing rapidly. The social worker, Nancy, was trying to help him formulate a care plan that would allow Leonard to stay in his beloved apartment until the end. He received practical support assistance from the Shanti Project, San Francisco’s premier AIDS assistance agency, and he had weekly visits from Visiting Nurse Association. A friend or neighbor who could oversee Leonard’s care on a daily basis was needed. Leonard was an intensely private man. For all his socializing and philandering, he had no close friends.
“What about your neighbors?” Nancy asked. “You’ve been in this building for over thirty years. Surely there is someone here who could help you.” Leonard shook his head.
“No,” he insisted. “There is no one.”

Nancy knew that Leonard had an upstairs neighbor with whom he was friendly. He had watered her houseplants when she was on vacation.

“What about the lady upstairs?” she asked him. “Didn’t you say that she has lived here almost as long as you have?”

Leonard was horrified. He exclaimed. “She’s British, for the love of God. If she knew that anyone in the building had AIDS she’d be on the next plane for London. No. My only hope is to stay out of the hospital.”

But Leonard was not able to stay out of the hospital. He developed pneumonia and spent almost a month on a ventilator. By the time he was finally extubated, Leonard’s weight had plummeted to under one hundred pounds. He did not have the strength of get out of bed.
“My only hope,” he told Nancy, “Is to get strong enough to go home.”

That, also, was not to be. Leonard went from the hospital to a nursing home. He struggled valiantly against the ravages of his disease and worked daily with a grueling regimen of physical therapy. Leonard’s strength did not return. Finally Leonard looked at Nancy and said slowly and sadly, “Now I have no hope.”

On Easter Sunday 1991, Nancy sat at Leonard’s bedside and read to him from a children’s book she had brought, The Velveteen Rabbit. It is a story about death and resurrection. Leonard listened patiently and, when she had finished, he smiled weakly.

“I don’t get it,” he said. “I like it. I just don’t get it.” Nancy tried to explain.
“Its about hope, Leonard. Hope for new life. For better things to come . Do you remember hope?”

Leonard could only shake his head sadly. “No,” he whispered hoarsely, “I have no hope.”
Soon after this conversation, Leonard was transferred to a hospice house. He never saw his home again. His possessions were sorted and disposed of by strangers. It looked for a while as though Leonard was right. As though all hope was gone.

The people at the hospice house were kind. Leonard had a small room there which we crammed full of the things he treasured most. As the days passed, spring became summer and Leonard slumped into a near-death stupor. He had stopped eating altogether with one exception. Leonard loved chocolate fudge ice cream. Twice a week Nancy visited Leonard, stopping on the way at the ice cream parlor for a pint of Ben and Jerry’s chocolate fudge. She would sit at his bedside, spoon -feeding him the ice cream, occasionally reminiscing. But more and more the time they spent together was silent.

Nancy was vaguely aware that Leonard had another visitor in the afternoon. It was Dorothy, the British woman from his apartment building. Dorothy had noticed Leonard’s absence from his apartment and she had somehow found him here at hospice house. One day Nancy ran into Dorothy coming out of Leonard’s room. Nancy asked how she had known to look for him at the hospice.

“I always knew about the AIDS,” she said. “How could I not know?” Then she said something Leonard overheard and which completely reframed his life.

“He took in my newspapers and gathered my mail last summer when I went home to England. Leonard has been my friend for almost thirty years. I love him. He is my best friend.”
Leonard was very weak. Far too weak to be his sardonic self. Too weak even to speak. Occasionally, he would pick up a pencil or pen and try to draw--a holdover from his days as an interior designer. The last time Nancy saw Leonard there was a picture on his night table that he was working on. It was a pencil drawing of a hill and a plant and a small elfin figure.
“How cute!” she said. “It looks like a spring time scene.”

Leonard touched her forearm and tried to tell her something, but the words didn’t come.
“Don’t waste your breath,” she told him. “You can tell me about it next week.”
Leonard looked irritated and frustrated with her. Perhaps he knew that they would not see each other again.

Nancy got a phone call the following Monday that Leonard had died.

“He left something for you,” the nurse told her. “A picture he was working on.”
When Nancy went to the hospice to pick up the picture, it was obvious that Leonard had been drawing the Velveteen Rabbit. That’s what he had been trying to tell her. Leonard had found friendship and love in the midst of his detachment. Leonard died with hope. The bitterness of his life was transformed by the discovery that he had been loved from the beginning.

Tuesday, January 25, 2005

After the Diagnosis

Getting a diagnosis of a life threatening illness is always a shock. To everyone, even to the doctor . It doesn’t matter if it was preceded by scores of medical tests, deep apprehension over time and a warning from the doctor that the results could be grave. Nothing can adequately prepare you for the words terminal illness.

Perhaps the doctor discussed the results with you, explained what they meant, and gave you some sense of what to anticipate in the days ahead. As the doctor presented the findings you likely experienced an intense sense of urgency. You and your loved one didn’t really focus on the lab results; all you saw was the potential end of his life and pain arriving as a set of data on paper.

After the Diagnosis
Life is changing.

The news of a terminal illness is a watershed event. The way your loved one perceives his life, the decisions he makes, the priorities he establishes, and the memories he treasures will all undergo radical transformations. Life will never be the same again for him or those who love him.

As strength wanes and emotions fluctuate, the patterns you have learned to call normal also shift. Shock, trauma and physical debilitation from the terminal illness will impact every aspect of your loved one’s life. Expect fluctuations in his personality. One minute he will be bouncing around the house, chatting nervously about everything except his illness. The next minute he will be glued to the computer researching everything on the internet that pertains to a medication. Ten minutes later he will be staring blankly into the future. He will be silent and brooding.

His attention to normal activities may also become erratic. One week he will go to the gym every day and eat only organically grown vegetables. The next week he’ll stay in his pajamas for three days straight and you catch him smoking on the back porch. He hasn’t smoked for twenty years. “What’s the difference?” he asks shrugging, “I’m going to die, anyway.”
Layers of shock and grief take up space in the brain. There will be forgetfulness, and he may have trouble concentrating. He could become indecisive. His feelings of competence diminish and he could feel very needy.

Things around the house and in your environment will change, too. Laundry won’t get done. He may skip some meals, cancel appointments–or not show up at all. Some days he may stay in bed all day watching infomercials on television.

Some of these changes are transitory. Others will wax and wane until the end.
If your loved one was the manager of the household, someone will have to provide assistance. The children still need to get to school. The family still needs to eat and laundry must be done. Bills need to be paid. The lawn still needs to be mowed. The dog still needs to be walked. Food still has to be bought and then cooked. Whatever roles your loved one was used to performing will have to be delegated elsewhere. But they still need to be done. At some point, you will need to get help.

If money is not an issue, hire someone to do the household maintenance so you can concentrate on the changes in your life. If you don’t have a lot of money, you may need to enlist family and friends to keep the wheels spinning. Learn how to delegate. Often church communities provide this kind of help. Talk with your minister, priest or rabbi. In some states, Medicaid insurance programs include a benefit called In Home Supportive Services (IHSS). A housekeeper comes to the home for a predetermined number of hours each week. This person provides personal care, assistance with household chores, shopping, cooking and running errands.

How Your Life Will Change as a Caregiver:

Your loved one’s declining health will bring about many changes in your own life. Some of the changes will occur gradually while others happen quite suddenly. For example:

· You will have less time to participate in your usual activities.
· You may have to make changes to the very basic aspects of your life. Perhaps you need to move from your home in the suburbs to care for a parent in another city.
· People who once slept snuggly in the same bed may no longer be able to share a bedroom. Medical equipment and physical incapacity may make you feel shut out of your loved one’s life.
· Relationships also change. Disease and treatment can cause physical changes and disfigurement. Your loved one may no longer feel comfortable with the easy intimacy you once enjoyed. He may no longer undress in your presence. He may also withdraw emotionally as he struggles to cope with unwanted changes.
· Your roles and your responsibilities to each other will become complex. You are no longer simply the partner, sibling, lover or child. You are now also the caregiver and, in some cases, the decision-maker. Both of you may feel uncomfortable with this change and there may be resentment.
In our next posting we will discuss these changes in greater detail and offer suggestions for dealing with the inevitable feelings of loss and grief. We welcome your input and look forward to sharing your thoughts and ideas on this site.
Pam and Jerry

Monday, January 17, 2005

Welcome to our blog

The time has come,
The walrus said
To talk of many things …
Lewis Carroll
Through the Looking Glass

There is nothing harder, sadder or more solitary than being the caregiver for a loved one who is failing. Whether it is the seemingly interminable suffering of a cherished husband or wife who struggles with Alzheimers or the sudden robbery of a stroke or heart attack, caregivers are charged with the physical care and emotional nurture of someone who was once their healthy, active life partner. Your household, your schedule, your entire life is subject to sudden upset and change. You may be struggling with illness, yourself. You may feel overwhelmed by the tasks you are now asked to assume. Worst of all, you know that no matter how hard you work, no matter how fervently you pray, no matter how deeply you love … this is not a battle you are likely to win. Throughout this entire affair you must also keep your own soul alive as you confront the pain of the great good-bye.

This web site is for you. It is here that you will find some comfort, some solace and be able to make some small sense of all this chaos and grief. Every week we will post a new article written for you to inform you, support you and, hopefully, lift your spirits to go on one more day.

Who are we?
We are medical and mental health professionals with many years of experience working with terminally ill patients and their families. We are also friends who have ourselves suffered personal losses and have walked the difficult road you are now traveling.

Pam Umann, MSW
Pam is a medical social worker with a specialization in life threatening illness. Pam has worked in a variety of settings including hospitals, home care agencies and hospice organizations. Pam is a certified hypnotherapist and a Reiki practitioner. In addition to her work in medical settings, she has developed and facilitated support groups, weekend retreats and ongoing classes throughout the San Francisco Bay Area and Monterey Bay area to help people identify and access the strength of their own spiritual natures.

Jerry Griffin, MD, PharmD
Jerry was the Medical Director for Visiting Nurses Hospice of Salinas Valley Memorial Health Care District and Hospice of the Central Coast for many years. He has a big heart for terminally ill patients and the families/caretakers of these special people. He is also a retired Army doctor, and was a pharmacology professor in his earlier professional life. Terminal and palliative care has become a truly satisfying part of his medical practice.

You are here, too
We will also be hosting chat sessions and open forums for you to share with us and with each other and to draw strength from developing relationships with other caregivers. We will be happy to post your thoughts and to respond personally to your comments and questions. On the right side of this page you will find our email links. We look forward to hearing from you.

Please check back weekly for new postings and new topics for discussion and please participate with your ideas, thoughts and suggestions. In the end, this web site is more yours than ours.

Till next week –

Pam and Jerry

Saturday, November 20, 2004

Hospice history

Hospice is a relatively recent concept that originated and gained momentum in United Kingdom after the founding of the first modern hospice, St. Christopher's Hospice in 1967. Dr. Cicely Saunders is regarded as the founder of the hospice movement. Since its beginning, the hospice movement has grown dramatically.

The first hospice in the United States was established in 1974. In the U.S., hospice care is provided by a core interdisciplinary team consisting of physicians, registered nurses, chaplains, social workers, and the family. The focus of the team is to optimize symptom relief and function in people with terminal illness. Additional members of the team are likely to include home health aides, volunteers, personal care assistants, and housekeepers.

Board certification for physicians in palliative care is through the American Board of Hospice and Palliative Medicine.