For a full year following my parents’ deaths – five weeks apart, in a nursing home 1,200 miles away – I fell prey to clinical depression. 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.
It Takes Time
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 a slow process.
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, 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
Caregivers pay the price for doing too much and not looking after themselves. Then, when they can finally let down, they 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 well-being.
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 on-line 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."
Need to Refuel
Most caregivers suffer degrees of sleep deprivation, denial, isolation, disruptions in eating and exercising and working. Appetite and energy and interest in daily activities may have fallen by the wayside.
There are many feelings a bereaved person may have experienced, such as anger and resentment and guilt, there may be physical fallout such as constipation and indigestion, skin rashes, weight loss, tightness in the chest, palpitations, nausea or prostrate problems.
In this “letdown “ time that follows the ordeal, it is likely, experts say, that these aftereffects will demand attention – so that fresh reserves of stamina and engagement can be built.
During the healing process…
This series of bereavement articles is in memory of Steven Mintz