Coping with loss

Relief and Guilt

“I’m a relieved it’s over and I feel guilty for that.”

When a loved one passes, we may find ourselves for a time in an unfamiliar landscape with a confusing mix of emotions. We expect to be devastated, but we may also feel relief. Many of us feel ashamed and confused by these raw emotions. And, historically, our society hasn’t done well acknowledging and talking about grief. Says Lee. L. Pollak, director of The Bereavement Center at San Francisco’s Jewish Family and Children’s Services: “We don’t do a real good job of saying goodbye to one stage before moving on. We’re a fix-it society: We like smiling faces and active, happy people” says Pollak. “There’s not a lot of room for the devastating sadness that comes with grief…or for acknowledging the huge range of normal feelings people experience.”

Fortunately, our society is getting better at talking about end-of-life issues. This can give bereaved caregivers a welcome opportunity to explore their journey and make peace.

Your Feelings Are Perfectly Normal

“It is perfectly appropriate to feel relieved at the same time you are feeling devastated,” says Rabbi Earl A. Grollman in his Decalogue: Ten Commandments for the Concerned Caregiver. It doesn’t means you haven’t loved fully, or cared for the person to the best of your ability. In fact, as a caregiver, you may have had to watch your loved one suffer for a long time. Feeling relief that that suffering is over is actually an appropriate response.

Get Honest—You’ll Feel Better

Phil Garrison, a long-term hospice and respite professional, has observed that it’s hard for most caregivers to recognize—let alone talk about—the resentment they feel over always having to be the responsible one. “Then they feel guilt, or worse yet, shame, for their sense of relief when the loved one dies.” Recognizing resentment/relief as part of the emotional fabric of caregiving is an important first step to ensuring a healthy recovery from the loss. “It is the honest recognition of what it means to live with suffering that empowers people to grow through the process of grieving the death of their loved one.”

Bereavement Can Be Lonely Business

Others certainly miss your loved one, but they may not have the same experience of absence, disruption and loss. These feelings can leave you feeling depressed and/or isolated. This is normal too. And if you need help—talk to someone!

Get Past the Guilt

Death can leave us with a sense of unfinished business. We may regret feelings we didn’t express, or apologies we never made. In her book, I’m Grieving as Fast as I Can, Linda Feinberg describes “death guilt” or the feelings of:

  • Torment over not having done or said everything you wanted
  • Regret that you couldn’t or didn’t do more
  • Guilt because you were not overly fond of the person anyway

No matter how much we have done as caregivers, it can take time to accept that we did enough, and what we left unsaid or undone is OK. Feinberg advises: “Widowhood is the time to be kind to yourself and not be your own worst critic.”

Take the Time You Need

Grieving is an individual process, and it marches to its own seasons. You may think you’re “past the worst of it,” and then get hit by certain smell, food, song, activity, event or occasion that triggers your grief anew. The emotional landmines can make us vulnerable or catch us by surprise.

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Who Am I Now?

“Who am I now that I am not a caregiver and mother?”

For all of his eight years, Carolyn cared for her son Billy, a hydrocephalic child who was ventilator-dependent and had a seizure disorder. He also had a stomach tube, thyroid problems, and brittle bones. Developmentally, he remained at two or three years old. Carolyn had 16 hours of nursing care each day through a state waiver program, but Billy could never be left alone. Caregiving was intense. He was in critical condition most of his life.

After Billy died, Carolyn discovered she had lost herself. For so long her sole responsibility had been her son, and her identity was based on mothering and caregiving. Afterward, she wasn’t sure who she was, but she knew she was not the same person. “As a caregiver, you feel like you’re not yourself. I was always, ‘Billy’s mom.’ I was rarely ever Carolyn. It was tough to find Carolyn again.”

Losing Ourselves

Caregiving can be all consuming. We built so much of our lives around taking care of our loved one that when he or she is no longer an active part of our lives, we are left with a gaping hole. The feeling of having nothing of you left after being a caregiver is common. Says grief counselor Alexandra Kennedy, “Caregiving is a time full of intense emotion because you’re dealing with dying and archetypal events. Then after the death, there is a letdown. You have this incredible sense of having been part of something so big and something so precious that in spite of the fact that it’s taken every ounce of energy, afterward, everything is gone.”

During your loved one’s passing, you may have let go of work and put relationship on hold. “Now suddenly you have to go back to ordinary life. There is a real sense of letdown, of 'Who am I now?' when before I was part of this very important thing that was happening,” Kennedy says.

Everything is Different Now

Caregiving is not just new or additional duties. It can mean a new identity or a different sense of purpose. Your caregiving role often took precedence over other relationships—to your spouse, employer, friends, parents, children or work. When our loved one is gone, we are left for a time between roles. The old patterns and priorities no longer apply but we’re not yet ready for new activities. Bereavement professionals call this phase of grief “reorganization.” It can mean feelings of numbness, searching and despair.

Getting Back to “Real” Life

When caregiving is over, other relationships that have been on hold may clamor for attention. Spouses, children, employers and friends may expect us to hurry up and get back “normal.” It is easy to feel overwhelmed by the backlog of things that needs to be done. Grieving caregivers can find themselves unable to focus. But life is not the same. We deserve and opportunity to what roles we want to reassume, and how we want to remake our identity and life.

Changed Priorities

Caregiving changes people. It’s hard to fill up a life again with people who have not been through what you’ve been through, who have not faced the hard issues of illness and death. Some caregivers find that after their loved one passes, they want to live more simply or authentically. Former caregivers might end marriages, quit jobs or get involved with causes aimed at relieving suffering. Many former caregivers volunteer for community programs, including providing respite care for other caregivers, visiting nursing home residents, or becoming mentors and companions.

“I Don’t Remember How to Take Care of Myself”

Self-care is critical to moving through grief. But when we have only ourselves to care for, it can be difficult to routines. For example, many people find it difficult to adjust to cooking for 1 after losing a spouse.

Grief counselor Martha Felber suggests little steps. Take short walks to regain stamina. Make a list of short- and long-term goals. Plan meals around your favorite foods. The discipline of physical exercise, of good nutrition and diet, can begin to take up those spaces that caregiving used to fill and lay the foundation for what is to come. Caring for oneself with time and patience also helps relieve depression and anxiety.

The Gift of Life

Alexandra Kennedy suggests that taking time daily to allow “the sense that your hands are empty and there’s nothing more to do” is the most important first step in filling out a life after caregiving. “Sanctuary”—as she calls this quiet time—gives us time to explore the inevitable changes in our values and priorities. It’s an opportunity to contemplate any unfinished business we may have had with the person who died.

“It’s okay to feel empty and alone and to not know who you are and where you’re going. A lot of people don’t realize the opportunity. All of these feelings are overwhelming, but you begin to cultivate the seeds of a new life from all emptiness. You really do emerge back into life with some sort of new creativity that needs to be expressed. It’s a place that is so much fuller because it embraces so much more of life. It’s almost as if our loved ones, in their deaths, give us the gift of life—again. And it’s our choice if we take it, the second time.”

Reconciliation

Alan D. Wolfelt, director of the Center for Loss and Life Transition in Fort Collins, CO, calls the idea of getting over grief a myth. “Everyone is changed by the grief experience,” he says. “For the mourner to assume that life will be exactly as it was prior to the death is unrealistic and potentially damaging. Recovery is all too often seen erroneously as an absolute, a perfect state of reestablishment.”

On the other hand: “Grief is a transformational process that makes possible huge shifts in who you are. You emerge so much bigger than who you thought you were, but you won’t get there if you don’t go through the feeling that you’ve lost yourself. It is a very delicate time; the identity builds again very, very slowly on all the emotions that are surfacing through grief.”

Wolfelt prefers the term “reconciliation” to define what occurs as the caregiver integrates the new reality of moving forward without the physical presence of the loved one. “As the experience of reconciliation unfolds, the mourner recognizes that life will be different. Beyond an intellectual working through is an emotional working through. What has been understood at the ‘head’ level is now understood at the ‘heart’ level.” Then, he says, commitments to the future can be made.

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Refueling Time

Tommye's Story

For a full year following my parents’ deaths—five weeks apart, in a nursing home 1,200 miles away—I became clinically depressed. I didn’t know it then, but by never taking the time for myself during two intense years of caregiving, I was heading for emotional and physical breakdown. Riddled with fatigue and apathy, I could find no meaning in the suffering, no way to reconcile that I hadn’t been able to do more.

I lived a year of survivor’s guilt, afraid that if I enjoyed myself I would betray their love and dishonor their pain. I had spent so much time not thinking about myself, I was afraid to even try. I bought into cultural conditioning that we should get back to business as usual quickly so as not to burden others with expressions of grief. And so I became an island unto myself, despite a wonderfully caring husband. While I was caring for my parents, my life had meaning. Now, I no longer mattered. I also didn’t know what I needed or wanted.

After the first anniversary of my parents’ deaths, somehow the clouds began to lift, and I understood that I was going through a normal life cycle, a passage more common as we become a nation of caregivers. There are common stages we pass through as we move from the exhaustion and despair of caregiving, through the numbness and shock of the death itself, and into healing and reclaiming our lives.

A Fertile Darkness

“I didn’t get my life back together. I created a new one,” says Tommye, who lost her mother, then her husband of 40 years, and then her job of 25 years, all in a short time. “I was so wrapped up in caregiving with my mother over long distance while I worked full time and drove the 1,200 miles every six to eight weeks, never realizing that my husband was literally dying before my eyes.”

Believing she needed to remain “strong,” Tommye’s emotional, religious, physical, and mental worlds imploded. She fainted on the streets of New York City and couldn’t remember her children’s names, their phone numbers or even where they worked. She knew she could get home, but afterward, her comeback was slow.

Caring for a loved one, especially over a long time and under intense situations, can strip away the expectations and lifestyles around which we built our self-esteem and identity. We are left for a time in a limbo that may seem bereft but which is actually a fertile darkness, a time of healing and rebuilding that allows us to take stock of our lives and refuel for the future.

After her big losses, Tommye felt that she no longer belonged anywhere or to anyone. But she realized that caregiving had made her resourceful, flexible, and ready to try new experiences. “There is no way you can piece together the old life,” she says. “The part of you that made up the old life has gone, along with all the creature comforts that went with it. You have to create a new life—by finding new adventures, people and experiences that please you.”

Attending to the Years of Neglect

As caregivers, we pay a price for doing too much and not looking after ourselves. Then, when we finally can let down, we often feel guilty about doing so. Friends, family, colleagues may not want, or be able, to accompany us through this limbo, where nothing feels anchored but where we are regenerating.

“It seems like I’m more tired than I’ve ever been,” says Carol Drzewiecki, 56, a retired registered nurse, voicing a common complaint of grieving caregivers. “During the time I was a caregiver, I was diagnosed with fibromyalgia and severe deep-sleep apnea.” Her husband had been a longtime diabetic who abused his health. Five years after they married, he had a massive coronary and died.

Two years later an aunt who had been known for her immaculate nature was found to be near death due to malnutrition and a lung infection from vermin in her home. Neighbors had reported that she was collecting garbage and storing it in her apartment. There were bugs and mice everywhere. Carol, who hadn’t been fond of her aunt Lola, stepped in nonetheless and grew to love her deeply.

But both episodes took their toll. “The need to care for her kept me going until she died but after that I became almost immobilized by the pain of fibromyalgia, and it got worse before it got better. I was barely able to get around on crutches,” Carol says, understanding that she got into trouble because she refused help. “Caring for both of them was more physically and emotionally exhausting than I realized until it was over, but I don’t regret doing it. If the need arose I would do it again, but right now it is time to take care of me.”

Bereavement Is Hard Work

“Looking after yourself during bereavement is more than just a matter of staying rested, fed, and healthy,” writes Edward Meyers in When Parents Die. “In addition, you must give yourself some emotional leeway. Don’t expect too much too soon. Bereavement is hard work and often long work as well.”

Many small activities can free up energy that has been trapped in sorrow, maintaining the past. We can redeploy this energy to build strength, to rest, to revitalize and clarify life’s purpose and focus. It is not that the mourner should not think about the past; it is that there must be a difference between dwelling and indulging, and forgiving and accepting. The former keep us paralyzed. The latter propels us forward. Health can be damaged by the unrelenting stresses of caregiving, and too often we have no control. Yet during bereavement, when the demands of immediate caregiving have ceased, we have an opportunity to take charge of our own wellbeing.

Moving Forward

It is important to find support.

Many former caregivers join support groups, caregiver chats and national bereavement organizations that allow people to have one-on-one, group or online support for their questions and concerns.

Hospice also offers year-long follow-up bereavement support, which can allow caregivers to express their feelings in a safe environment. These are some supports that give credence to the final stages of bereavement: acceptance and hope.

Holistic nurse practitioner Joan Furman says that a person reaches the stage of acceptance when he or she begins to take an interest in life again. "When this happens, it may be accompanied by a feeling of betrayal as you move farther away from your loved one. Acceptance does not imply forgetting your loved one or the relationship you shared. It is the slow but sure recognition that you are still alive and can go on living." And with acceptance comes hope, because we are beginning to feel good again. It is both consolation and promise; it indicates that we are coming into our own.

How to Refuel

No matter what form refueling takes, it is important to arrive at an understanding that it is not only okay to take care of oneself, but that it is critical to do so. For this is a time of healing, not just of body but also of emotions and mind. Finding your own voice, your heart's desire, learning to forgive others—and fate—paying attention to the ways you have not listened to your inner needs: These are the tasks that inform bereavement.

What kinds of activities revivify us? They can be large or small. Refueling can mean a new job or career, retirement, divorce, moving or selling a home. Making your bed again, going for a drive on a pretty day, brewing coffee instead of settling for instant, making pancakes and new recipes just for yourself, and going out to dinner with a good book.

To work through feelings and begin building a new foundation, try writing a memorial to your loved one (poem, sentence, book), drawing or painting a memory, dancing your feelings, crying, tackling a huge cleaning job. Go to the park or mountains and sit among the trees or to the beach and watch the cycles of waves. Other suggestions: movies, friends, naps, bubble baths, music. If you need, make a daily checklist—including brushing your teeth—to get you through the worst of times. Know that as time passes, however, you may wish to renew hobbies or start new ones." Just learning to focus on one thing for short periods can be very therapeutic," a former caregiver says.

Loving Life Again

The ability and the desire to go back out into the world, albeit a different world without our loved one, is one of the surest markers that we have given back to ourselves enough to have a foundation for new life.

It can also be said of caregivers: that new life is always within reach, if we have the willingness, the patience, to allow it to happen. If we are rushing to make life the way it used to be, we will end up disappointed, because that life no longer exists. Facing grief and healing from loss means that we have taken the time to understand that death is a part of life, and not something we need feel guilty or confused about. Healing also means that we have come to understand, respect and give to ourselves, that taking care is not a selfish act.

Refueling means learning that you can cope, the pain does lessen, that much of what you feared did not come to pass and life does go on. You cared, you became involved, you sacrificed interests and dreams, and you are a better person for it—the gifts you have given cannot be measured or counted. And even though you have experienced unfathomable loss, you met it with more courage and strength than you ever imagined, and you have survived. Now you can learn to thrive—a lifelong process.

Says Tommye: "I cannot believe how exciting life is becoming, more and more each day. Life, even without Bill, has become very challenging. I can hardly wait to see what the next day will bring."

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Grieving for Years

“Why isn’t it easier? I’ve been grieving for years!”

How do we know if our period of mourning is going on for too long?

"Too long" depends on the person, who one’s lost, as well as the duration and intensity of caregiving, say professionals. "The path of grief is not a period of time, but a process. People grieve through different stages. It becomes a problem when there is NO process, when people go over and over the same things, when there’s no change in what’s experienced or expressed over a long period of time. Dysfunction is when there's no movement, and the person is stuck."

Losing a loved one is one of the most distressing and, sadly, common experiences people face. People experiencing normal bereavement have a period of sorrow, numbness, and even guilt and anger. Typically, these feelings ease. The bereaved person gradually accepts the loss and moves forward. For some people though, feelings of loss are debilitating and don't improve even with time. This is known as “complicated grief.” It’s well known to therapists who specialize in bereavement.

Clinical psychologist Dr. Therese Rando has found that in complicated grief the bereaved never gets past the stage of acute grief. The mourning persists and doesn't draw to a natural conclusion. "The processes of revision and readjustment never occur," she says. "For these people, it's always as if they just lost their loved.”

“Complicated grief” can be characterized by:

  • Intense feelings of confusion
  • Unrelenting loneliness
  • Panic attacks
  • The inability to feel anything at all
  • Embarrassment or discomfort in expressing grief
  • Guilt that can't be shaken or that grows into self-hate or self-destructiveness
  • Unrelenting anger or hostility
  • Increased use of drugs or alcohol
  • Inability to carry out daily tasks or take on responsibilities several months after the loss
  • Suicidal thoughts or feelings of worthlessness

It Is Complicated

Sandy was only 40 when she lost her young child, Mike, to leukemia. After four years, she still could not find any meaning in life. Her husband wanted another child, but she was unwilling. Eventually, they drifted apart and divorced. Even today she is back to working part time, but is unable to enjoy her colleagues or their children because she’s always in pain. She feels like a failure as a mother and a wife. She cannot let go, and cannot stop feeling sorry.

"Sometimes people can't let go of grief because they equate it with letting go of that relationship," says Leiser. "The emotions can become incredibly confused: 'If I stop grieving I don't care about them or it means they're really gone. If I'm crying every day, I'm still connected to them.' "

Long term mourning can also be caused by unresolved feelings—anything from guilt over something that happened years earlier, a feeling that as a caregiver one didn't do enough, or feelings of anger. "Anger is a common part of grief that people have a hard time acknowledging," says Leiser. "There is a social stigma around being angry or speaking ill of the dead. So often, people become very angry—or even carry it from childhood—and never work it through with the person. Yet those feelings remain, even after the person is gone though we think we should only think nice things about this deceased person."

The Road from Loss to Acceptance

There can be pitfalls on the road from denial to acceptance. Complicated grief occurs when there is a failure or distortion in one or more of the processes of mourning. The bereaved person may struggle in the areas of:

  • Recognizing the loss
  • Giving it some form of expression
  • Identifying and mourning secondary losses like companionship, connections to a social group, or a sense of how the world is supposed to be
  • Remembering the deceased and the relationship realistically
  • Relinquishing one’s old way of life and adapting to the new situation
  • Developing a new relationship with the deceased

What’s Causes Complicated Grief

"Certain situations, like multiple loss or severe trauma, may predispose people to complicated grief," says Roz Leiser, a registered nurse. The burdens of long-term caregiving can also complicate mourning. For some the grief started when their loved one because ill or debilitated.

Dependency on the deceased can also complicate the mourning. Some mourners prefer to stay in this place rather than make changes and go on without the their loved one. Says Rando: "We see this as coming from an attachment disorder—the bereaved doesn't think they can go on in the absence of the individual, so they just hang on to the old world even though things have changed."

Caregiving and Extended Grief

Post-traumatic stress can be a factor in lengthy mourning. Witnessing an extended dying process can be distressing and make us less resilient during the grief process.

Carol husband, Don, was confined to an ICU unit for nearly two years with liver disease before he passed away just shy of their 24th anniversary. She had tried to be in control and to remain strong during the period of intense caregiving, but it took its toll. Ten years later Carol says that long-term caregiving changed her. "My grief comes in waves. The waves are further apart, but I never know when they will hit. If I hear a song and it brings back a memory, I can always switch a radio station. But thoughts can be hard to control. We are conditioned to return to business as usual, to 'get over it' and 'get on with life.' But sometimes that doesn't happen easily; sometimes the feeling of deep loss can go on for years."

Life Does Go On

Rando says that many people believe that mourning continues forever; it is the acute grief that eventually ends. "A person may be long past acute grief yet still be in mourning," she says. “Even long after a death, a wide variety of circumstances can produce brief periods of grief for the loss of the loved one. Accommodating the loss leaves a psychic scar similar to a scar that remains after a physical injury. This scar does not necessarily interfere with the mourner's overall functioning, but on certain days and under particular conditions it may ache or throb and require some attention. Healthy accommodation does not mean that the bereaved no longer mourns. It means only that the person has learned to live with the loss in ways that do not interfere with his or her healthy functioning in the new life without the loved one.”

Christine Longaker, author of Facing Death and Finding Hope and a lecturer on spiritual care of the dying, writes that even two years after her husband's death, the cycles of intense pain and sadness were excruciating. Although she wanted to ignore each intrusion of fresh pain and hopelessness—even contemplating suicide—she finally addressed her feelings of grasping, of longings for what could never be.

Wanting her life back, Longaker decided to practice a new way of thinking about her greatest loss. "I am letting you go and wishing you well," she began gingerly. "I am going to survive and be strong. I am going to make a new life for myself." And after a few months, she discovered that her process of mourning felt complete.

"Part of the task of mourning is to let go of our former relationship and then consciously decide to create a new life, with meaning and purpose," she writes. "This decision helps us summon the courage to finish our grief. Failing this, mourners can end up living halfheartedly in a shadow world. Grievers needs to find their own personal answer to the question: For what purpose will I continue to live?"

Things That May Help

Here are some suggestions for getting through the grieving process:

  • Mobilize your social support system as soon as possible. Reach out to friends, family and your community.
  • Talk through feelings rather than dwelling on them.
  • Try to see a new perspective.
  • Identify potential coping difficulties early in the grief process.
  • Seek professional help if you feel stuck.
  • Use rituals. Whether formal or informal, public or private, rituals can give expression to powerful emotions.
  • Explore cultural and religious traditions around grief and spiritual transitions. These can guide your actions during confusing and chaotic times.
  • Acknowledge your grief for smaller losses—not just death.

Barbara's Story

Barbara exhibited the classic signs of an inability to finish grief after her husband of 50 years, Marvin, died after a ten-year battle with emphysema, diabetes, and congestive heart failure. The primary caregiver for most of those years, Barbara retired early from her career as a paralegal to care for Marvin full time. Though they had sufficient money to finance more in-home help, and even a nursing facility when he became totally dependent, still she felt it was her duty as a wife and a woman to tend to all of his needs. For the first year after Marvin died, Barbara rarely left the house. Ashamed of her intense emotions and unable to cope with widowhood, she spent most of that time in bed.

"I never understood what was normal in the grief process," Barbara says now, five years later. "I was constantly judging the process or suppressing it, so that I would feel in control. I felt that to be strong, I couldn't express my sorrow. No words could describe the total disruption in my life that the caregiving caused; but even more was the high level of grief that permeated every day."

Caught in limbo between past and future, Barbara felt nothing but emptiness in the present. She could not accept Marvin's death, and therefore couldn't begin the mourning process. Because she was the first among her circle of friends to lose a spouse, no one understood what she was going through. In her isolation she felt abnormal, which further suppressed her ability to express her grief. She wallowed in unresolved feelings of guilt, such as worrying that she hadn't gotten him to the doctor early enough, or often enough; she compiled a laundry list of hurts and grievances that she dwelled on alone. Unable to move forward, she remained stuck in fear that her grief would never end, and that she hadn't enough courage or smarts to live without Marvin. Afraid that opening to the pain would cause an explosion of unbearable emotion, she chose instead to face the other direction until one day she awoke realizing she was wasting her own precious life.

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Moving On

“What do I do with everything I’ve learned about caregiving?”

Most caregivers willingly and lovingly take on the duties that are required of them. We give our all to ensure that their husbands, wives, parents, children or other loved ones manage their disability, illness, even death, with as much dignity, compassion, and independence as possible. For many, devoting ourselves so completely can become life transforming.

Letting Go

One of the hardest lessons caregivers learn is letting go. It starts with letting go of our previous dreams and expectations. But, at the end, "Letting go means allowing the one who has died to leave and continue on her journey," writes Victoria Frigo in You Can Help Someone Who's Grieving. To achieve healing, the grieving person will need to 'let go' again and again in many different ways. Be aware that these last good-byes are some of the hardest things a person will ever do."

In this separation, it is possible to see the caregiving experience from a different perspective with a greater sense of peace and a vision of the greater whole in which we live. The pain, anger, guilt, resentment and fear that we may have experienced while in the depths of caring for our loved ones is given a chance to dissipate. This distance, however small, allows us to see our roles—our gifts and shortcomings—with more clarity and compassion.

Myrna is a single mother who lost her young daughter to leukemia. "While I was a caregiver, all I could see was the two of us. Now that she has been gone two years, I can see that everyone suffers in some way, that we all go through experiences that make us more human. It was very healing to understand the connections that we have even in the worst of times. I am no longer alone in my grief, and know that I can move on and still have a meaningful life, even though Karen can never be replaced.”

Extending a Hand Back and Planning Ahead

The end of caregiving is both an ending and a beginning. Moving on involves using our hard-earned wisdom in new ways: reestablishing priorities, coping with grief more softly, and refocusing on what truly matters in life. Many caregivers chose to share their experience and knowledge with others who follow. We often become hospice volunteers, visit residents in convalescent facilities, or advocate for more funding for community resources for caregivers and their loved ones. We volunteer in church programs for elders or help families with special needs children; we teach classes on caregiving; we organize brown-bag lunches at work or push employers to institute caregiver benefits. We create web sites, develop newsletters, join local and national health organizations, and lobby the media to cover caregiving issues.

Timid and isolated during caregiving, many of us have risen above our hardships and become strong voices for others who are still struggling. We are messengers of caring, giving support where we can and creating new ways of sharing expertise.

Compassion in Action

For Tom, the frustration and anger over the problems his parents had with Medicare and healthcare providers spurred him to develop special software for families to demystify Medicare paperwork and help track providers and payments.

For Carol, seven years of long-distance caregiving for a father with Parkinson's disease propelled her into the arena of congressional lobbying. She advocates for increased funding for research for Parkinson's.

For Karen, caregiving for a deeply religious mother with Alzheimer's inspired her to develop a program whereby ill loved ones can attend religious services with their caregivers despite incontinence, frailty or disability.

For Irene, a social worker, losing two children to a congenital heart problem led her to develop a therapeutic process to help chronically ill patients and their families. She also established a foundation in her daughter's memory and authored two books on the challenges of long-term illness.

By learning from our own experience and helping others, we former caregivers become mentors to those who are just beginning down the path of caregiving. We are able to look back on what we've experienced, seeing the pain from a bit of distance and charting a new course. Life is no longer about the pain and frustration, but the memories and a need and desire to reconnect with others, to smile again and to recognize that we are different, tested by the fires and having survived great odds. We are in the best position to guide others, and in doing so we often find compassion, connection and community.

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