For fifteen years I cared for him.
His accident was days after our engagement. My mother pulled me aside and said I could still walk away if I wanted. I knew it would be a hard road of nursing him back to health. No one knew if he’d recover or what recovery would mean. It meant putting my career on hold. Putting my family second. Putting my fiancee first in all things.
And I did. I stayed with him. For weeks in the hospital. For months of being home bound as he regained his strength.
I married a man who was still, we hoped, getting better. He has gotten stronger. Or perhaps simply better at adapting to his circumstances.
For fifteen years we lived like this. With me bearing the burden of responsibility for both of us in so many ways. With me still letting him be the man of the house. With me always putting my husband first.
I finally decided I couldn’t live like this anymore. With my identity all wrapped around his. Subsumed by his.
My nephews are in that phase where they’re obsessed with favorites. What’s my favorite food? Color? Hobby? Animal? I realized I didn’t know any of the answers for myself any more. But I knew them all for my husband.
I didn’t do anything dramatic. I decided to join the local gym and take a class once a week with some other ladies from church. To make sure we attended church together every week. To take a little time each week doing something for me, even if something else feels more important. That’s three or four hours a week for myself, after fifteen years of ignoring myself in favor of someone else.
He didn’t like it. He met someone new at church. I should have known something was wrong when he stopped trying to make excuses to not go. I was so excited when he stopped protesting, when he started getting ready on his own. I was thrilled to see people every week, feel connected to something. He felt connected to something else.
The thing is, part of me is thrilled. To be free, finally.
Sometimes the bitterness wells up in my throat. I gave so much to him and it was never enough. Does he even realize what I did for him? But I know it doesn’t matter. I know what I did. I know how much of myself I’m willing to give. And I know he would never do that for me.
It’s as if a weight has been lifted off of me. It has been, really. The weight of a man who I’ve supported all of these years.
Moving forward, I can finally support myself.
The saga began Wednesday morning in March 9. Hours of screaming. Calling for the ambulance. Emergency room admission. Morphine drip for the pain. CT scan. Calls to calm his hysterical mother. Five-hour surgery I’d been told would just be a couple of hours. Surgical ICU for a week. Steve was put in an induced coma so all of his strength would go to healing. I sat in the alcove in his room and watched him for days; swaddled in white linen with tubes coming in and out of every part of him.
On Friday afternoon, our gastro doctor told me to go home and get some rest. His exact words were “Steve is circling the drain.” What? “He’s gonna have to fight to pull through the weekend. If he does, we’re in the clear. And you’re going to need your strength.” I couldn’t breathe. It was like I was punched in the gut. All the air was knocked out of me. I must have gone straight into a state of denial because “I knew” that Steve would pull through. I wouldn’t have it any other way. I’d spend my days sitting beside him as long as needed to secure his complete recovery.
When he was rushed to the hospital, the doctors thought it was acute appendicitis. I told them he’d been self-medicating for diverticulitis for a week and the surgeon discovered it was peritonitis from his CT scan.
I’d sit and knit in his room from 10:00 a.m. until I left about twelve hours later. The nurses loved me. We’d bonded and I was a great help to them. Steve’s bed was right in front of the nurse’s station and the room had a little alcove I could hide in after visiting hours were over. No one ever kicked me out.
On Friday morning when our internist was doing his rounds, I was already at the hospital. He needed to speak with me. The CT scan the surgeon had taken on Wednesday was shot a little high and shown cancer in the middle lobe of his right lung. After I caught my breath I conveniently “forgot” this until Steve had recovered from his surgery, was home healing and we began making visits to all of his physicians.
First the surgeon—Steve had done beautifully and was given a clean bill of health. Then his gastroenterologist—clean bill of health with instructions to change his diet and begin exercising. Finally, we went to our internist who also gave Steve a clean bill of health and told Steve to get dressed and meet him in his office—which was par for the course.
But this time, he told us that a cancerous growth had been found on the middle lobe of his right lung and that he needed to find a surgeon and oncologist as soon as possible. Now that the wounds were healing from his surgery, it was time to address the cancer.
A big part of caregiving for me was having the ability to go with whatever was thrown at me. The 12 Step program’s Serenity Prayer—“God grant me the serenity to accept the things I cannot change, courage to change the things I can and the wisdom to know the difference,” saw me through. It was that simple; that cut and dried. With whatever “Higher Power” I believed in, the prayer made perfect sense. It made it possible for me to go with the flow. To do all I could do to affect change acknowledging there were some things beyond my control.
That was the key. I didn’t relinquish control, I just needed to recognize when things were beyond me. All I could do was my best and then let go.
The word “cancer” rang out as a “death sentence, “ but I went to work finding the best oncologists and surgeons I could. We spent about two weeks interviewing leaders in the field in New York City and made our choice. We learned that if the middle lobe of his right lung was removed that Steve would be fine—for a while—but that this cancer would return and ultimately kill him. We heard that from eight different specialists.
Going through surgery for peritonitis and waiting for that to heal to be able to go through surgery to reverse the temporary colostomy he had needed to be able to wait for the reversal to heal to be able to have the middle lobe of his left lung removed took six months. After that, we’d be able to have peace of mind for a while.
Being told you’re going to die from cancer—eventually—doesn’t mean you just sit back and wait for it to take you. First there were scans every three months, then every six months and once we’d gone a year and a half cancer free, we got a little cocky. I was still doing research on new protocols, but with every visit to the oncologist we’d be told why “That’s not an option for Steve.” That didn’t stop me from looking for the best care available. After Steve’s second six-month scan, the cancer was back.
This, of course, did not make us happy, but we kept on plugging doing all we could to extend Steve’s life. Surgery in Boston (where his original surgeon had relocated), chemo and radiation in New York. It was his life but I was the one who was going to be left. From the time of diagnosis I knew that this day would come and other days like it, when we’d be told this or that protocol wasn’t working any more and the cancer was spreading.
In September of 2010 he started pinpoint radiation therapy. The cancer had spread to his spine. After this, there was a new chemo regimen. The one major blessing in all of this is Steve never looked sick. He never lost too much weight. He never lost his hair. His complexion was always ruddy so he never looked pale or sickly. For all the world, he looked like a healthy man and was treated as such.
Steve did a weekly TV call-in show for 35 years and he had many regular callers. Because he looked so well, not one of them knew he was ill. For one hour every week, he could feel free of the disease. He could be “the old Steve.” He did his show until two weeks before he died. It was his best therapy.
Waiting for chemo sometimes took hours. We’d have to go through the motions and have Steve’s vitals taken and then sit until someone could see us. When his doctor saw him, Steve asked “How long do I have?” and when the doctor told him “Maybe three months” I didn’t believe him. I lived with this man. I knew whatever was going on, Steve had weeks left to live, at best. While he took his treatment, I slipped away and found a P.A. who knew me. I confronted her. “Tell me the truth. I don’t think he has months to live. I’m his wife. I’m the one who will be left. How can I prepare for what I know is coming if I don’t know the truth? I need to know. I won’t tell him.” She turned to me and said “No more than a month. Maybe less.” At last. The truth, though ugly and sad, was something to hold on to.
About a week later, the oncologist told us “The cancer has gone to your spine. There is nothing more we can do for you except make sure you’re not in pain.” I’d heard those words before right before my father died. “We’ll make sure he’s comfortable” was another familiar comment. We left the doctor’s office, went home and cried together. We’d both done all we could and both given it our all. The fact that we had gotten to a place in our relationship where there was no blame being assigned, much appreciation and open expressions of love. I was going to have to live with the remnants of terminal cancer, but I could live with myself.
All my work and efforts on his behalf had just been part of the natural order. Steve let me know how much more capable I was than he had ever realized. He let me know that the thing he felt worst about was leaving me alone. There was so much left to be shared. He was about to turn seventy. About to begin to take it easy and travel to all the places we’d dreamed about.
Of course the idea of what my new life would be like had crossed my mind. I felt no guilt thinking about the future without him. After all I’d done everything within my power to keep him alive and we both accepted there would be life for me after Steve. But I was grateful; grateful that he’d never really looked ill; grateful he’d had it easy compared to some other cancer patients we knew; grateful he wasn’t in pain. But when the dementia took hold, I knew it was a matter of weeks or even days. I hated the thought of living like this for too long.
My Steve only made brief appearances now and then. From midnight ‘til dawn I lived with a paranoid maniac. He slept during the day—pain meds exhausted him, as had his episodes of dementia the night before. Of course he didn’t know what was going on, which made it all the more painful for me. This brilliant man was seeing spacecraft outside out bedroom window; or Vietnamese women with cats padding about the front of our apartment, stealing things. Days later he was hospitalized and ten days after that he died.
I’d learned to “play it as it lays.” It was the only way for me to cope. I’d done my very, very best and had zero regrets. Steve’d given me permission to live a good life after he passed. He’d told me who I couldn’t date. He’d told me to ask for help when I needed it. If he couldn’t be there, he wanted me to feel taken care of nevertheless. I’ve followed his instructions. I have a life. I try to give back. I have a mission. I have wonderful memories; but I have a future too. Steve wouldn’t have wanted me to waste it.
Things have changed a lot in the US during my grandmother’s lifetime.
My grandmother retired before I was born. Usually the people I remember as having been “old” during my childhood turn out to have been slightly older than I am now. Not so with my last remaining grandparent, who looks quite old in photos where my parents are younger than I am.
I used to tag along with my dad to her house multiple times a week, making sure everything was taken care of. She could live alone, but she needed help with little things. She’s never been a fan of children and I can’t imagine I was much help, so I’m sure no one really cared when I stopped going.
Why did I suddenly refuse to visit my grandmother? I was so angry that she knew who my sister was (the pretty one) and had not the slightest clue who I was (the nerdy one), even though my sister visited her only for required family occasions. The first time she forgot who I was, everyone brushed it off. I boycotted grandma.
It was nearly 20 years before anyone diagnosed her with dementia. The amount of help she required each week grew gradually, until it was clear she needed my father to move in with her.
When my grandmother was working age, it was unusual for a woman to work. The elderly and infirm were expected to be cared for by the wives who looked after the children. The daughters were expected to help.
Now only the wealthy can afford to survive on a single salary. Even those who could afford to have one spouse stay home often have ambitions beyond their homes. As the pay structure and societal expectations shifted, the rest of the world failed to shift to accommodate the needs of childcare and eldercare.
When Social Security was unveiled, the life expectancy of an American was 62 and payouts began at 65. Today, most people live to see 80. No wonder the system is always on the verge of collapse — it wasn’t designed for this.
More and more people rely on Medicare while fewer people pay into the system.
With many parents requiring care starting in their 60s, most people will spend more years providing eldercare than childcare. Children spend hours a day at school, elders require 24/7 care with little financial support.
They’re expected to support themselves, save for retirement, put their kids through college, and support their parents. People are collapsing under the weight of these unreasonable requirements.
As soon as I was living on my own, my parents eldercare responsibilities intensified. And now they’re providing childcare for their grandkids while still taking care of their own parents. So much for an empty nest. While the other elders in our family have passed away, grandma still needs 24/7 care.
My parents have been fortunate: they’ve made it through the financial and emotional gauntlet of eldercare with their own lives largely intact. They had jobs that provided the flexibility to provide eldercare, often for multiple people at a time, without having to give up an income. So many haven’t.
Our lives have changed. It’s time our system for eldercare changes, too.
A mother of five and grandmother to nine, married and divorced four times, and a clinical social worker in private practice for nearly forty years, Joan Childs thought she had experienced or seen it all. But nothing could have prepared her for the death of her beautiful daughter, Pam. A brilliant psychotherapist, Pam battled constantly with Bipolar Disorder until one fateful summer day in 1998 when her demons overwhelmed her and she plunged to her death from a 15th floor balcony. Even with their combined credentials and medical knowledge, Pam still could not be saved. She became the driving force behind Joan Childs’ latest book, Why Did She Jump? (HCI Books), and brings hope to anyone struggling with grief from the loss of a child or loved one to mental illness, that there is hope for better tomorrows.
Fierce and tender, Joan’s compelling storytelling gives us an insightful yet sensitive look at her daughter’s life dealing with Bipolar Disorder. Peeling back the layers of pain and despair, Joan takes readers through the dark days of grief and guilt she felt both as a mother and as a frustrated professional who doesn’t understand why more hasn’t been done about this disease. With brutal honesty, Joan recalls how the lives of her entire family became entwined with her daughter’s illness as they watched her sink deeper into a place where no one could reach her. It is a powerful story of courage, hope, acceptance, and finally, forgiveness. Now, Joan reflects on her daughter’s many accomplishments, in spite of her illness, and sees them as Pam’s legacy to the world.
In an earlier book, The Myth of the Maiden: On Being a Woman, the author looks at the evolution of women from helpless maidens to dragon-slayers. Both books are excellent resources for personal growth and development after life changes and loss. In spite of many personal losses, Joan ‘walks the talk;’ she lives life to its fullest and maintains a level of energy and passion at age 76 that would put a 40-year-old to shame! A strikingly beautiful woman and energetic and inspiring speaker, Joan ignites the passion in others to find their own path to courage, healing and hope after the heartbreak and struggle of losing a loved one/child to suicide or any other cause of death.
Joan’s television series, Solutions, was dedicated to the memory of her daughter Pamela, and offered information and resources for anyone suffering from mental and mood disorders. She provides lectures, workshops and seminars dedicated to her profession of mental health and women’s issues and is a spokesperson for bipolar disorder and suicide.
Joan E. Childs, LCSW, has been in private practice since 1978. She is a Licensed Clinical Social Worker specializing in couples therapy, known as Encounter-Centered Couples Therapy. An expert in Codependency, Inner Child Work, Original Pain Work, and Second Stage Recovery, she is certified in many modalities including a master practitioner in NLP, (neuro-linguistic programming), a master practitioner in EMDR, (eye movement desensitization and reprocessing), Supervision, Hypnosis, PAIRS, (Practical Applications for Intimate Relationship Skills), and is a Certified Grief Counselor. She was the first affiliate of the John Bradshaw Center in the United States and has made appearances on national TV shows including The Oprah Winfrey Show, The Mark Wahlberg Show, Maury Povich, The Montel Williams Show, and many more.
For more information on this remarkable woman and her work, please visit the website: www.joanechilds.com.
When a loved one dies, we often go into cleaning mode. There is an urge to bring order to a world that has been turned upside down. I began cleaning out my mother’s condo the same day that she died. I was desperate to stay busy, to wear my body out with exhaustion as my mind reeled from the profound moment I had just experienced. After a cleaning frenzy, I certainly was exhausted, but dismayed at how much remained.
My parents weren’t hoarders, but they came from a generation that was reluctant to discard of household goods. I was fortunate in some respects that my parents had always lived in small quarters, whether it was an apartment or the retirement condo, but a lifetime’s worth of stuff was still formidable to assess. Over time, I have made significant progress. The local Humane Society took my parents’ sofa and recliner, and I found a lovely woman via Care.com who picked up several boxes of donations to take to a church thrift shop where she volunteers. My mom would be pleased that everything from Avon dish collections (which she received from her brother and never used) to my childhood toys will have new homes.
Almost two years after her death, my mother’s clothes still hang in the close, as do my dad’s clothes, and he died five years ago. Furniture and books also remain. What happened?
It’s not sentimentality, as I long ago selected keepsakes from each of my parents that hold special meaning. It’s been difficult to find the rest of the items a home. Other families are running into the same issue.
As a Next Avenue article bluntly put it, “Sorry, nobody wants your parents’ stuff.”
I don’t have children, but even those who are parents will find that younger generations are not interested in acquiring “stuff,” especially when that stuff includes heavy furniture and book collections that will hinder their much-beloved mobility. While furniture, artwork, and books used to be family heirlooms, handed down from generation-to-generation, for younger people, these items are seen less as treasures and more as burdens.
As a Generation X member, I’m somewhere in-between in my love of old family items. I have a few such pieces in my home, but I’m not a collector. Even if I wanted all of my parents’ stuff, with their condo in New Mexico and my home in Georgia, the logistics and cost wouldn’t be worth it.
Family caregivers may end up babysitting their loved one’s stuff long after their family members are gone. For those who can afford it and need to move items quickly, there are estate liquidation companies and senior move managers who can offer tips on downsizing while your loved ones age in place. For others, especially those in rural communities, unloading household items can be more of a chore.
Charities that accept donations such as clothes and furniture often have a higher standard for quality than one might expect. They are not meant to be dumping grounds for junk, and they have every right to refuse items. My parents’ wardrobe, heavily worn and hopelessly out-of-fashion, would not make the cut at many charity-operated thrift shops.
Items like my parents’ bed are beyond well-used and simply need to be disposed of, but that is easier said than done in a small town. In Atlanta, when I want to get rid of junk, I simply used one of the many junk removal services. Some even provide same-day service. But no such service exists in my parents’ small town, and classifieds, online and in the local newspaper, have not been helpful. Unlike Atlanta, the town’s sanitation service does not offer a bulk rubbish day where heavy items can be left by one’s household trash for pickup. Everything would have to be trucked to a landfill. I asked a local home renovation company who was giving me quotes on repair projects for suggestions, and even they didn’t know of a local resource.
There are options which I’m going to explore. One option is donating clothing to nursing homes. My father wore mainly donated clothes during his time in a memory care center, because the distance was too far for my mother to bring laundry back and forth, as some family members did. Of course, there are no nursing home near where my parents live, so that would mean transporting the clothing.
Another option is to use a service like Goodwill’s Give Back Box which accepts most items (refer to website for restrictions) and provides a free shipping label. In my case, because USPS did not provide mail delivery to my parents’ condo, I would have to bring such boxes to a post office or shipping center.
My father loved the local library so I may be able to find a home for his books there.
Unlike some families who are selling their parents’ home and are forced to clean out quickly, I have the luxury of time as I maintain ownership of the home. The old mattresses and box frames are stacked in a bedroom, collecting dust but out of the way. The books are boxed up. The clothes are doing no harm hanging in the closet. While I’m still eager to finish the job, once everything is gone, I wonder if I will have a pang of longing for what is no longer there.
Maybe the younger generations have it right. Hang on to the important things, the memories of time spent together with loved ones, captured in a neat and tidy digital form. Let go of materialistic goods that do not bring joy or have special meaning. It will certainly make the purging process less painful.
The pain and sorrow of bereavement is supposed to get easier to bear as time passes. But what if it doesn’t? Psychiatrists call it ‘complicated grief’ – and it can be treated. Andrea Volpe reports.
After Stephanie Muldberg’s 13-year-old son Eric died of Ewing’s sarcoma in 2004, she was lost in a sea of grief. Her days were long, unstructured, monotonous. She barely left her New Jersey home. When she did leave, she planned her routes carefully to avoid driving past the hospital, just a few miles away, where Eric had been treated during the 16 months of his illness, or the fields where he had played baseball. Grocery shopping was a minefield, because it was painful to contemplate buying Eric’s favourite foods without him. To enjoy anything when he could not felt wrong. And Muldberg never thought she would be able to return to the temple where he had celebrated his bar mitzvah – and where his funeral was held.
Looking back, she describes herself as not knowing how to grieve after Eric died. “I didn’t know what to do, how to act in front of people – what I needed to do privately, who I could reach out to. I was fearful of making people more emotional, too emotional, and having to comfort them,” she tells me, by Skype. “I didn’t know how to talk about what I was thinking.” Muldberg’s long dark hair is pulled back and she’s wearing a white T-shirt. One of the things she says is that she thought if she stopped grieving, her memories of Eric would fade, and she’d lose her connection to her son for ever.
The passage of time often seems the only remedy for grief, but time didn’t help Muldberg. In the years following Eric’s death, she says, she felt consumed by grief. Then a family physician heard a talk by Columbia University psychiatrist Katherine Shear about treating chronic and unremitting grief and thought Shear might be able to help her.
Four years after Eric died, Muldberg arrived at the New York State Psychiatric Institute in Manhattan, for her first meeting with Shear. She answered Shear’s questions with as few words as possible. It was as if she were barely present in the small, windowless room. Her face was drawn and clouded; she sat crumpled in her chair, arms crossed tightly around her, as if the weight of her loss made it impossible to sit up straight. It felt to her as if Eric had died just the day before. Shear diagnosed Muldberg with complicated grief, the unusually intense and persistent form of grief she has been researching and treating for almost 20 years.
Grief, by definition, is the deep, wrenching sorrow of loss. The initial intense anguish, what Shear calls acute grief, usually abates with time. Shear says that complicated grief is more chronic and more emotionally intense than more typical courses through grief, and it stays at acute levels for longer. Women are more vulnerable to complicated grief than men. It often follows particularly difficult losses that test a person’s emotional and social resources, and where the mourner was deeply attached to the person they are grieving. Researchers estimate complicated grief affects approximately 2 to 3 per cent of the population worldwide. It affects 10 to 20 per cent of people after the death of a spouse or romantic partner, or when the death of a loved one is sudden or violent, and it is even more common among parents who have lost a child. Clinicians are just beginning to acknowledge how debilitating this form of grief can be. But it can be treated.
I first learned about complicated grief while riding the subway in Boston, where I read an advertisement recruiting participants for a study at the Massachusetts General Hospital, which I later discovered was related to Shear’s research. By then, I’d been a widow for about a decade. I was 33 when my husband died and it was fast – just six weeks from when he was diagnosed with pancreatic cancer. My grief had a different kind of complication: I was pregnant, and our son was born seven months after his father’s death. By the time I read that subway ad, he was in elementary school, and I was holding my own. I gradually went back to work. Single parenting was overwhelming, but it kept me focused on what was right in front of me. Having a young child is filled with small pleasures and motherhood enlarged my sense of community. I fell in love again. But it still felt like I walked with a limp, and that limp was grief.
Often, I felt that the course of my grief – as it slowed or accelerated – wasn’t within my control. Sometimes I’d buckle, and wait it out. Sometimes I’d push back. Somehow, I knew it was going to take as long as it took. There wasn’t anything to do about it except live. Freud, writing in Mourning and Melancholia, one of the first psychological essays on grief, saw it this way, too: “Although mourning involves grave departures from the normal attitude of life, it never occurs to us to regard it as a pathological condition and to refer it to a medical treatment. We rely on its being overcome after a certain lapse of time, and we look upon any interference with it as useless or even harmful.” That’s how it went for me.
I’d be the first to say that my path through grief has been intellectual. I’ve spent years contemplating what grief is. That subway ad made me wonder: Was my grief a disease? To be diagnosed with an illness is to seek – or wish for – a cure. But conceiving of grief as a disease with a cure raises questions about what is normal – and abnormal – about an experience that is universal. Is grief a condition that modern psychology, with its list of symptoms and disorders and an ample medicine cabinet, should treat, as if it were an illness rather than an essential part of being human?
A little more than a year ago I began sitting in on clinical training workshops at Columbia’s Center for Complicated Grief, which Shear directs. The first workshop was both a challenge and a relief. It was strangely comforting to be in the company of so many people – grief counsellors, social workers and therapists – who spent their time thinking about what it meant to grieve. It would be almost another year until I called Stephanie Muldberg to see if she’d be willing to talk at length about what her treatment was like.
Sometimes I can feel in our conversations how deliberately she chooses her words. She is, she tells me, a very private person. At times her desire to talk about her experience of complicated grief feels in tension with her natural inclination to be more self-contained. “I think the problem is people don’t talk about grief, and I want to normalise the fact that people can talk about it, and make it easier, and not so taboo,” she tells me.
For something so fundamental to being human, there’s still a great deal we don’t know about the grieving process. It wasn’t until the 20th century that psychologists and psychiatrists claimed expertise over our emotions, including grief. The conventional wisdom about grieving is that it’s something to be worked through in a series of stages. Lingering on any stage too long, or not completing them within a certain window of time, might be dysfunctional. Clinicians disagree about how long is too long to grieve, about whether the grieving person should wait for her grief to shift on its own or do something to initiate that process, and about what to do, and what it means, if grief is slow or stalled.
The idea of grief as something we need to actively work through started with Freud. John Bean, a psychoanalyst who has trained extensively with Shear and worked with her to treat patients in her research studies, explains to me that because Freud believed we have a limited supply of psychological energy, he viewed the central emotional “task of grieving” to be separating ourselves emotionally from the person who died so that we can regain that energy and direct it elsewhere. Freud thought this would take time and effort and it would hurt. His theory of “grief work” persists, often in tandem with newer theories of grief.
If grief is work, then Elisabeth Kübler-Ross provided the directions for how to do it. Kübler-Ross first proposed the five-stage model in 1969 as a way to understand the psychology of the dying, and it quickly became a popular way to understand bereavement. Today, those stages – denial, anger, bargaining, depression and, finally, acceptance – are practically folklore.
But it turns out grief doesn’t work this way. In the past several decades, more rigorous empirical research in psychology has challenged the most widely held myths about loss and grief.
When George Bonanno, professor of clinical psychology at Columbia University’s Teachers College, researched the paths people take through grief, he discovered there’s more variation to how we grieve than psychologists thought. His office, in a massive gothic brick building in New York City’s Morningside Heights, is crammed with books and lined with Chinese sculptures. On a rainy afternoon he outlines the three common paths he identified. Some people, whom he terms “resilient”, begin to rebound from loss in a matter of weeks. Others adapt more gradually, following a “recovery” path. The intensity of those first days, weeks and months of mourning subsides. They “slowly pick up the pieces and begin putting their lives back together”, typically a year or two after losing someone close to them. People with complicated grief, like Muldberg, struggle to recover. Their grief becomes what Bonanno calls “chronic”, staying at a high level of intensity for years.
One school of thought that has influenced Shear is called the dual-process model: grief is stressful, so we alternate between confronting the emotional pain of our loss and setting it aside. Even grieving people, research has shown, have moments of positive emotion in their lives. Hope returns gradually. If the stage model maps a single, clear path through grief, then the dual-process model could be seen as a charting a wave pattern through grief.
It’s now an axiom of grief counselling that there’s no one right way to grieve. That seems like a good thing, but it’s also a problem. If everyone grieves differently, and there’s no single theory of how grief works, then who’s to say that someone like Muldberg isn’t making her way through grief in her own way, on her own clock? Even though it was clear to her and to those around her that, four years after her son’s death, she was still suffering, bereavement researchers don’t agree about how to explain why her grief was so prolonged – or what to do about it.
Shear, who is in her early 70s, is the warmest shrink you’ll ever meet. Everything about her conveys equanimity, especially the way she can sit with the stories of patients whose grief is unrelenting.
It wasn’t always that way. “At the beginning,” she tells me, she was “afraid to sit in the room with someone who was really intensely grieving because I was still a little bit uneasy with death and dying, but also because it makes you feel so helpless – because you feel like there’s nothing you can do”. The grieving person, she says, “feels like the only thing that’s going to help” is bringing back the person they are grieving – “and you agree”.
“Grief is not one thing,” Shear says. “When it’s new, it crowds out everything else, including even people and things that are actually very important to us. It stomps out our sense of ourselves, too, and our feelings of competence. We think of grief as the great disconnector, but over time, it usually settles down and finds its own place in our lives. It lets us live in a meaningful way again. It lets us have some happiness again.”
Two weeks later, I’m jammed into a hard plastic desk in an overheated university classroom listening as Shear, who is professor of psychiatry at Columbia’s School of Social Work, explains the underlying principle of her work, which is that “grief is a form of love”.
She quotes me C S Lewis’s A Grief Observed to explain what she means: “Bereavement is an integral and universal part of our experience of love. It is not the truncation of the process but one of its phases; not the interruption of the dance, but the next figure.” This is called an attachment approach to grief. It’s shared by many grief researchers and counsellors, and it can be traced back to the British psychiatrist John Bowlby. Attachment is what gives our lives security and meaning. When an attachment is severed by death, Shear says, grief is the response to the lost attachment. Peel back the psychological theory, and what you’ll find is something that anyone who has experienced grief knows intuitively: “Nature is so exact, it hurts exactly as much as it is worth, so in a way one relishes the pain, I think. If it didn’t matter, it wouldn’t matter,” writes the novelist Julian Barnes in Levels of Life, his extended essay on grief following the death of his wife.
Shear explains that it’s our close bonds to those dearest to us that also help us want to care for other people and confidently explore the world. These attachments are woven into our neurobiology. The longing and yearning of acute grief, and the feeling of unreality that comes with it, she says, are symptoms of just how much grief short-circuits our bio-behavioural wiring.
Shear agrees with Bonanno that over time most grieving people integrate their loss into their lives. But people with chronic grief face some complicating factor. Complicated grievers tend to be women. They are often excellent carers but not so good at taking care of themselves or accepting help. Often, their emotional reserves of self-compassion and self-motivation have been drained. Shear says that “we don’t grieve well alone”, but frequently people with complicated grief become isolated because their grief has remained at high levels for so long; the people around them may feel that they “should have gotten over it by now”.
Shear believes that adapting to grief and loss is “a normal, natural process”, she says. “We’re not talking about grief itself being abnormal. We’re talking about an impedance in some problem of adaptation.” Think of it this way: her therapy jump-starts a stalled process, the way a defibrillator restarts a stopped heart.
Shear’s office, with its striped beige wallpaper and mahogany furniture, is so spotless it would feel like a hotel room it if weren’t for the picture of her grandson as a chub-cheeked toddler on her panoramic Apple monitor. It’s a sticky day in July, and she’s telling me how she came to study and treat grief.
In the 1990s, Shear was researching anxiety and panic disorders at the Western Pennsylvania Psychiatric Institute and Clinic when she became involved with research on depression and anxiety in elderly people. One of the common triggers for depression in the elderly is the death of a spouse, and the team she was working with identified a cluster of symptoms in depressed patients that weren’t depression. They expressed deep yearning, were often driven to distraction by thoughts of their deceased spouse, and had great difficulty accepting death, to the point that persistent, acute grief became a risk to their physical and mental health.
To differentiate grief-related symptoms from depression and anxiety, Shear worked with a research team that included psychiatric epidemiologist Holly Prigerson. It was Prigerson who, in 1995, had published a questionnaire that identified complicated grief as a specific syndrome and could accurately assess its symptoms. Shear has relied on it as a diagnostic and assessment tool in her research ever since. Shear and her colleagues also used it to design a new treatment, complicated grief therapy. Prigerson, who now holds an endowed professorship at Weill Cornell Medicine in New York City, and directs Cornell’s Center for Research on End-of-Life Care, continues to work on the epidemiology of prolonged grief.
In their first meeting, Shear asked Stephanie Muldberg to keep a daily grief diary, recording and rating her highest and lowest levels of grief. Muldberg kept this diary for the duration of the therapy. Every day for almost half a year she was paying such close attention to her grief that it became inscribed in her daily life. Not that her grief wasn’t already a pronounced everyday presence, but now, with Shear’s help, she was facing it head-on rather than avoiding it. The diary was one of several techniques Shear used to help Muldberg look her grief in the eye.
Muldberg says that the grief diary helped her pay attention to herself in a way she hadn’t been able to do in the four years after Eric’s death. Using the diary, she began to see that she had some happy moments interspersed with some low times of grief. “There were always going to be hard times during the day for me, but I wasn’t only focusing on the hard times, I was starting to learn how to move forward.”
Complicated grief therapy (CGT) takes place over 16 sessions, structured, Shear says, by techniques adapted from approaches used to treat anxiety disorders, including cognitive behavioural therapy, a well-researched approach to psychotherapy, and exposure therapy, used to treat avoidance and fear in anxiety disorders. The structure itself is part of the therapy, she says, because structure is reassuring to people who are feeling intense emotions.
Shear has been testing CGT since the mid 1990s. In 2001, she and her colleagues published a small pilot study that showed promising results. Since then, they have published several randomised controlled studies supported by the National Institute of Mental Health, demonstrating that CGT helps patients who have complicated grief to reduce their symptoms better than conventional supportive grief-focused psychotherapy. Shear is a pioneer, but she’s not an outlier. Currently a group therapy version of CGT is being studied at the University of Utah. Researchers in the Netherlands and Germany are also exploring variations on cognitive behavioural therapy and exposure therapy to treat traumatic and prolonged grief. And a recent study in Wales confirms one of Shear’s main findings, which is that the techniques in her treatment are more effective together than separately.
A few sessions into her treatment, Shear asked Muldberg to do something she had never done, which was to tell the story of the day Eric died. It’s a technique Shear adapted from prolonged exposure therapy that she calls “imaginal revisiting”. At first, Muldberg says, she was apprehensive because she wasn’t sure if she could remember what had happened. Over the course of three weekly sessions, Muldberg told the story of Eric’s death, rating her levels of emotional distress as she did. The purpose of this technique is to “help people connect with the reality of the death in the presence of a supportive person who is bearing witness to it,” Shear explains. “We want to keep grief centre stage,” she says. “If you do let yourself go there, paradoxically your mind finds a way to face that reality and to reflect on it.”
Then, as with the grief diary, Muldberg had “homework”: listening to a tape of herself telling the story every day between sessions. At first, this was distressing, but she gradually learned how to manage her emotions, recognising, she tells me, that she wasn’t going to forget Eric. The intensity of her feelings began to lessen, so that by about halfway through the therapy she began to feel better.
Muldberg admits she was sometimes sceptical of what Shear was asking her to do, and she says sometimes she pushed back. Part of CGT includes psychoeducation, in which the therapist explains to the patient the premise and purpose of the therapy. Shear’s explanations, Muldberg says, helped her understand that “there was a reason I was feeling this way”. She describes Shear’s approach as “I don’t want to push you but we’re going to figure out ways that you can accomplish these things, feel good about them, and do them.”
A few weeks after Muldberg started revisiting the story of Eric’s death, she worked with Shear to make a list of the places and activities she had been avoiding since he died, and gradually started trying to face them. Shear calls this “situational revisiting”, a form of prolonged exposure therapy. “We do this to provide people with an opportunity to confront the reality of the loss and actually understand its consequences, because being there without the person is going to be different than being there with the person. We want people to start to reflect on that,” she tells me.
For Muldberg, many of the things she had avoided were the everyday parts of being a mother, such as going to the grocery store, but she says, “I didn’t realise how much harder avoidance was than doing some of these things.” Together with Shear, she broke down tasks, such as driving past the baseball field where Eric had played, into smaller steps until she could do them again.
Sitting in that classroom listening to Shear explain these exercises makes my chest tighten until my heart aches. I can’t imagine doing them myself, let alone how anyone with complicated grief could withstand them. It seems like a wrenching exercise in repeatedly tearing a scab off a wound.
When I ask Shear about this she acknowledges that her approaches are counter-intuitive because they “ask people to go toward their grief”. She tells me it’s by explicitly detailing and describing their grief that people with complicated grief become unstuck, as they learn to shift back and forth between the pain of grief and restoring their lives. Shear is more interested in having patients engage with the therapy techniques than she is with getting them to reach a certain point. To her workshop audience, she puts it this way: “We do not try to lower grief intensity. I’m just trying to turn the Titanic one degree.”
In one of my conversations with Muldberg, I remark that CGT seems counter-intuitive, almost confrontational, and that these exercises seem extremely emotionally demanding. She is quick to correct me. Therapy was challenging, she says, but it came as a great relief to finally feel understood and have the support to face Eric’s death. “When I started to do things, I started to feel better,” she tells me.
For Shear, “feeling better” is a sign that our natural adaptive abilities are kicking in, allowing a person who is suffering from complicated grief to begin the emotional learning process that ultimately helps grief subside. This also creates an opening for the person to begin to reimagine their life after a devastating loss.
At the same time that Shear was helping Muldberg come to terms with the reality of Eric’s death, she was also helping her begin to envision the future. Part of losing someone very close, Shear says, is that we lose our sense of identity. Part of grieving is regaining it.
In another CGT exercise, the therapist asks a scripted question: “If someone could wave a magic wand and your grief was at a manageable level, what would you want for yourself? What would you be doing?” Someone with complicated grief can’t imagine a future without the person they’ve lost, or without the unrelenting, intense grief that’s taken up residence in their life. It’s a future-oriented question for someone who has lost sight of the future. Just asking the question, Shear says, can activate our innate exploratory system and spark hope.
One way to think of the therapist’s role in CGT is that she’s teaching her patient what grief is. “Loss is a learning process. The problem is, it’s unwanted information,” says therapist Bonnie Gorscak, one of Shear’s long-time collaborators and a clinical supervisor at the Center for Complicated Grief. Learning from loss, Gorscak says, means being able to “stand in a different place and look at grief”, to approach the pain it causes, experience it, and have some respite from it. It’s a counter-intuitive approach for therapists, too. Sitting with someone with complicated grief, Gorscak says, “is some of the worst pain I’ve ever sat with”.
CGT is challenging, but it works. Still, Shear’s therapy has sparked controversy, starting with the very idea that there is a form of grief so severe and debilitating that it meets the definition of a mental illness.
In recent years, Shear and a group of colleagues have advocated for a grief disorder to be included in the Diagnostic and Statistical Manual (DSM), psychology’s diagnostic bible, because they believe complicated grief is a clear-cut, diagnosable syndrome, separate from depression, anxiety or post-traumatic stress disorder. (Shear and Prigerson, once collaborators, now disagree about the best way to diagnose complicated grief, but they agree it should be viewed as a mental disorder.) Without sanction by a DSM diagnosis, psychotherapy in the US is not covered by health insurance. Without insurance reimbursement, CGT is out of most people’s reach. In 2013 the DSM-5 listed Persistent Complex Bereavement Disorder as a “condition for further study”, calling for more research on the issue.
The major issue therapists have with complicated grief is that they believe it pathologises a fundamental human experience. Leeat Granek, a health psychologist at Israel’s Ben-Gurion University, is concerned that including a grief disorder in the DSM could narrow the spectrum of acceptable ways to grieve and create a narrative that would distort the ways people understand their own grief. She believes that this would lead to “a lot of shame and embarrassment for the mourner because the expectations around grief are no longer realistic”.
Donna Schuurman, senior director of advocacy and training at Portland’s Dougy Center, which supports grieving children and families, questions the idea of a grief disorder. She rejects the use of terms such as “complicated”, “debilitating” or “persistent” to describe grief reactions and as the basis for constructing a diagnosable syndrome. Schuurman agrees that “grieving people may have chronic issues or chronic problems related to what has happened after someone dies”, but says that “often those issues were already there before the death”, and that “chronic issues ought not to be framed as mental disorders of grief”.
“Medicalizing or pathologizing the experience of someone who is having difficulty after a death does not do justice to the full social and cultural context in which he or she is grieving,” she writes. “Grief is not a medical disease, it is a human response to loss. Many people who are experiencing severe challenges after a loss are doing so because the social expectations around them are not supporting them.”
Instead of labelling complications of grief as symptoms that define a disorder, Schuurman says she would focus on the experiences and behaviours that were contributing to any “serious challenges” a grieving person was facing. “We can label it depression, drug or alcohol abuse, etc., as any good therapist should do,” and “try to look at underlying issues, and not just symptoms, to be of help,” she explains. Good professional help, she believes, “could take a variety of forms and theoretical backgrounds”.
New scientific research on grief, Shear’s among it, is challenging some of the foundational premises of grief counselling as it has been practised, often in community settings. As George Bonanno discovered, there are several common trajectories through grief, meaning that there are some commonalities among grieving people as they adapt to loss. Still, Shear says, “each experience of grief is unique, just as each love experience is unique”. CGT, she says, “helps people find their pathway to adapting to loss”.
One way to answer the question of whether or not grief is a disease is to ask if the treatment provides a cure. Stephanie Muldberg describes her grief as “a wound that wasn’t healing”, but CGT isn’t a cure the way antibiotics cure an infection. Grief doesn’t end, it just changes form. Muldberg says CGT taught her how to live with grief as part of her life. She still carries her grief for Eric with her, but she is also back in the world. She travels with her husband and daughter. She volunteers for the Valerie Fund, an organisation that supports families of children with cancer and blood disorders, and that helped Eric and their family when he was sick.
I ask Shear when her fear of sitting with intensely grieving people had subsided. “Well,” she says, “there’s this entire field of study called terror management.” I was expecting her to tell me about her feelings but she answers by telling me how research explicated them – exactly what she’s done in designing a therapy for complicated grief. I look up terror management: it’s the theory that in order to deal with the fear of our own mortality, we find ways to find meaning and value in our lives – like helping people. In that sense, what Shear has done with CGT is to create a form of evidence-based compassion. It’s compensation, perhaps, for the existential helplessness of the therapist, but it also compensates for many of our communal failures helping people grieve. We are too busy, too secular, too scared to deal with grief. It’s hard for Western culture – American culture in particular – to sit with something that can’t be fixed.
The more I thought back over my conversations with Stephanie Muldberg, the more I thought about how her therapy with Shear helped her put Eric’s death in context of her life story. The idea that a story needs a beginning, middle, and end goes back to Aristotle. People with complicated grief can’t see the arc of their own stories. They can’t get to what classic plot theory calls denouement – resolution. Most of us, when faced with a loss, find a way of putting what happened into the form of a story: this is what happened, this is who I was, this is what the person who died meant to me, and this is who I am now. But people who have complicated grief can’t do this.
Grief is a problem of narrative. A story, in order to be told, needs a narrator with a point of view who offers a perspective on what happened. But you can’t narrate if you don’t know who you are. Many of Shear’s therapy techniques are about learning to narrate in the face of great pain and devastating losses. Start with the grief diary, which records the emotional story of your everyday life. Follow that by imaginal revisiting, akin to a wide-angle shot in cinema, which helps organise a story arc amidst intense emotion.
Plotting out the story restores the narrator and the narrative. Then, you can begin to imagine a new story, a new plot for yourself. It’s not a choice between grief or living, remembering or forgetting, the way Muldberg once worried it was. The book of life is a multi-volume set. A sequel can only start when the first volume is brought to a close and when the narrator knows she’s going to be all right.
As the oldest child, my mother has been called upon to serve as the executrix for multiple family members. I recently asked her what was involved with executing a will and she was kind enough to write this up for us:
Being named executor of someone’s estate is a daunting task, involving patience, fortitude and responsibility. Talk with the individual about his/her wishes and financial holdings when you are both calm and clear-headed, well BEFORE the final act.The conversation should include funeral arrangements; location of the legal will; where financial docs, passbooks, stock certificates, deeds, etc. are kept; how the contents of the home should be distributed; if the individual has a prepared obituary available.
The legal will should NOT be kept in a safe deposit box.
When the meeting with the funeral home takes place, try to have someone accompany you. Mourners are sometimes moved by guilt and grief in spending more than might be prudent.
Order more death certificates than you think you will need. For each account (bank, life insurance, investments, even EZPass) one must submit a death certificate with a raised seal.
Probate the will. This means bringing the original will and death certificate to the county seat in NJ where the deceased resided. Sometimes satellite offices are set up at local libraries. As a result of this meeting, a surrogate’s letter (sometimes called letter of testamentary) will be generated. When the executor of the will liquidates the deceased’s assets, a death certificate and surrogate’s letter minimally must be produced.
Regarding the deceased’s checking account, it would be optimal if the deceased and executor have a joint account. Bills must be paid for the deceased while the estate is being executed, which sometimes takes months. If a joint account has not been established, be aware of how long the checking account will be kept viable by the bank before it is closed.
Notify by mail the heirs named in the will.Notify all agencies of the deceased’s holdings (banks, investment companies, life insurance, pension offices, etc) of the owner’s death. The funeral home will notify the Social Security office automatically.
Keep careful records of all financial transactions while liquidating the deceased’s holdings. Include detailed expenditures and deposits in the checkbook.
Should the contents of a home need to be removed, enlist help. Hopefully the deceased will have already distributed special possessions to the special people in his life or included directives in the will. Additionally it is recommended before death to clean and organize the home as much as possible. If multiple visits to charitable drop-off locations (Goodwill, ASPCA for pet bedding, local thrift stores, Elks for medical supplies) is not possible, there are agencies who will empty out a home. Freecycle is another option.
Depending on the estimated value of the estate, enlisting an account or an attorney could be prudent. Although there are numerous resources on-line, in local county offices and in publications, it is often easier to phone a professional for advice.
It is possible that financial holdings should not be liquidated without tax waivers. This is pertinent if the estate’s value is very substantial (check the actual number according to the residence of the deceased). Taxes for the estate must be paid, including federal and state income tax and estate tax. Hopefully the deceased has considered financial planning BEFORE his passing which could include trust funds, gifting and other options.
OMG! Another year has gone by which, in retrospect, feels like it occurred in the blink of an eye, and what’s done is done. The coming year holds many mysteries, trepidations, adventures, changes and losses, but many opportunities as well. So, I’m suggesting that we dispense with resolutions and just focus on living in the here and now; living in the moment. Let’s all just BE.
Instead of the promissory list that leads to disappointments and recrimination over what we’ve failed to do, let’s concentrate on WHO we want to BE and WHAT we want to BE rather than what changes we want to make.
There’s a certain amount of satisfaction in writing a list, and I’m not encouraging you to not to do so. I am encouraging you, however, to consider how you look at life. You should know “you are enough;” that doesn’t mean you can’t BE more.
So for the month of January, I’m going to consider how I want to “be” in my life. I may want to be loved, but “Be Loving” would have to come first. I want to “Be Fearless” but since I don’t want to be careless or reckless I also want to “Be Sensible.” One does not preclude the other. We may or may not have some of the same items on our lists, but maybe your sense of daring is not the same as mine. It is, however, no less authentic.
There is one item everyone I’d like to see on everyone’s list—BE Yourself. It is, after all, what you can be best at.
The Dog Days of August are upon us. It’s blisteringly hot in New York and at the beach and not only is there no escape from the heat, but there’s nowhere to go where the 26th of August, my late husband’s birthday, isn’t looming large on the calendar.
March 19, 2016 marked five years since Steve died. He would have been 70 that summer; this year, it follows, he would have been celebrating his 75th birthday and I would have been busy planning a huge party. Alas, I am not.
Moving on with my life has been a “process.” I didn’t need grief counseling; my pre-grieving experience and sharing honest feelings with my husband, didn’t leave me with an “I’ll be lost without him” feeling. Instead, I learned NOT to say “NO” to anything and concentrated on staying open to possibilities as they presented themselves. The huge void the end of caregiving left in my life was filled building “The Caregiver Space,” which has kept me close to Steve’s memory but not stuck in the past. Visiting and revisiting the cancer diagnosis and how caring for a spouse you have been told will ultimately succumb to the disease, has proved far less painful, in retrospect, than expected. It hasn’t been at all painful keeping his memory alive. We had wonderful times. He’s always around—I still live in the loft we built and shared. The photos out on the shelves of vacations taken, fish caught and love shared remind me of Steve, his humor and his spirit—but the loft is a far cry from a shrine.
There are moments when his presence is palpable—I’ll hear a song or a see a movie on TV that was special to us and it feels like he touched me on the shoulder. This often happens at the times when “a sign” from him is most welcome. I sort of say (to myself), “Hi Steve! How’d you know?” Sometimes it feels like it was just yesterday that he passed. At other times I am amazed at how long it’s been and allow myself to feel a great sense of accomplishment.
I have moved on. I have a boyfriend; I have The Caregiver Space—both require me to be flexible and draw on my life skills. I don’t feel sorry for myself—few people have been lucky enough to have someone like Steve in their life. He was brilliant, funny, insightful, adorable and a royal pain in the butt. I wouldn’t have given that up for anything. We were joined at the hip and as the expression goes, “The presence of his absence is everywhere.” But after two-and-a-half years alone, I felt it was time to begin dating. Happily, the man I’m dating understands and respects the memory of my husband and has no problem with his remaining a big part of my life. We were, after all, together for almost thirty-two years. You don’t just wipe the slate clean—I don’t want to. I learned too much and loved too much to let it all go by the wayside.
But August 26th is still just around the corner. Ten days away, to be exact. I’ll be with my girlfriend Marjorie at the beach. My boyfriend is bi-coastal and will be returning to LA the day before. That feels right. Marjorie knew and loved Steve and is married to one of his very dearest friends. I’m not alone in feeling the loss. But I don’t dwell on it. I allow myself to feel whatever I want to feel whenever I want to feel it. I have my “go to” songs if I want to have a good cry—or my “go to” movies for that matter. I follow my heart, which has miraculously led me into a good relationship with a man of an appropriate age. He’s chasing his dream of being an actor, now that he’s retired, and I have The Caregiver Space. We’re both as vital as we’ve ever been doing things we love.
I’m thankful—every day—that Steve was in my life. I do whatever I can to honor him in what I’ve chosen to do. On what would have been his 75th birthday, the best way to celebrate him is to say “Steve…look what I’ve accomplished because of you. You’ve made it possible for me to help a lot of other people.” I think he’d be proud of and pleased with that.
It’s five years since Steve died. March 19, 2011 at 6:45p.m. But who’s counting? Even with five-plus years of anticipatory grieving, when the real thing comes along, you’re sideswiped.
Every year, at this time, I run the “last days of Steve” scenario in my head, over and over again. The three weeks leading to his death are still very much etched in my memory. The quick downward progression. The emergency room visits. The hospitalizations. No, the end was definitely not fun. It was an emotional roller coaster that still has me reeling to this day, which is why I’ve come to limit the days I revisit that time.
But, five years is definitely a milestone. I went from counting the days, to the weeks, to the months, to the years—it’s amazing that it’s come to that, since he’s so present in my thoughts and daily routine.
There is life after caregiving. I can attest to that. One month after he died, I went to open our summerhouse full of its memories—it was a great space to grieve, reminisce and heal. By the end of the season, I was ready to take on the mission of creating The Caregiver Space. As tinged with Steve, illness and melancholy as the task may have been, it was my way of reinventing myself and getting on with life. Something that began as a pipedream and a way of staying in touch with women who had been in my spousal care cancer support group, became instead a way of touching all caregivers in need of emotional support.
So, creating the website was my way out of the darkness and into the light—the website and Broadway theatre. I’ve never been one who had a problem doing things alone—restaurants, museums, movies and plays—and I hoped I’d begin to meet people doing things I like to do—to populate my new life with people who had common interests. Didn’t happen. But that was never the reason for going out. I relish cultural expeditions on my own. It was getting to be the time, however, for me to “fish or cut bait,” so to speak. I was, much to my surprise, ready to date.
After Steve died, I didn’t waste any time when it came to posting my profile and photos on a few dating sites. In all honesty, it was good for a giggle. I ended up studying the phenomenon of match.com, jdate and okcupid. I didn’t know who or what I was looking for, other than companionship and I was in no rush. So when the time came and I was ready to start dating for real, I had learned that a sixty-five year old widow wasn’t about to meet anyone on what turned out to be youth targeted dating sites. It was time to check out ourtime.com, geared to people over fifty.
Well, I had a few bites but nothing that intrigued me—so I started prospecting myself. It sort of felt like “Goldilocks”; this man was too short, that man lived too far away and eventually I found someone who was just right. Steve had let me know he wanted me to find someone to be with after he was gone—but he had his list of people I could not date. What’s really funny is that the first two people who were “suggested matches” for me in my daily notifications were on his list of candidates not to date. And I was going to respect his wishes.
My capacity for reading people paid off. I’ve been dating the first man I went out with—someone I found for myself—for almost two-and-a-half years. I DO know myself and have learned to set boundaries in my life. I’m not a kid anymore. I’ve learned to make my feelings known. After years of caregiving and what sometimes felt like bowing to my husband’s every whim, what “I” wanted was paramount; being direct, honest and caring has allowed me to be in a loving relationship where my limits and my person are respected.
In no way do I feel disloyal to Steve or his memory. My “boyfriend” (in quotes because it feels so silly saying girlfriend or boyfriend when we’re both over 65) lets me speak about my past. There are photos of Steve everywhere and that’s fine and how it should be.I was with Steve for over thirty-five years—he is still a big part of my life—and he still comes up in conversations with people who knew him. There’s no way I could be with someone who didn’t understand that.
Moving on doesn’t mean you have to leave your past behind you—sometimes I feel mine is like a friendly, cozy, favorite sweater I wear that keeps me safe and grounded. It’s made me who I am. Your past is part of who you are. It doesn’t go away. Carrying it around with you is unavoidable.
We move on in our own time, in our own ways. There is no cut-off date for grieving or feeling sad. There is no timetable for when to start dating. It’s all about doing what feels right and authentic to whoever you are. If you stay honest with yourself, you’ll know what to do when. It’s all about being an individual again vs. part of a unit. Find your new comfort zone—sometimes it’ll be just a little out of your old comfort zone. Be brave. Be happy.
Today is my mother’s yahrzeit—the anniversary of her death on the Jewish calendar. I was a long distance caregiver to her for the three years she lived after my dad passed away. I’m living proof that you can dislike someone intensely and yet truly care for them. It’s all a matter of mindset.
Granted, I live in New York and she in Florida, but there was her routine, medical forms to be dealt with, private aides to counsel and console, and of course her constant complaints about everything and everyone in our daily phone calls. There was also the weight of knowing that the call could come at any minute for me to fly down because she was in the hospital—yet again. She loved the hospital. There she felt like the center of attention.
She was not an easy person to care for—even from a distance. An extremely vain, supreme narcissist with a chronic lung condition that required four separate hour-long treatments every single day is a handful. She was disciplined. In her late sixties, she was given two years to live and showed them all, dying fifteen years after her diagnosis—which I credit to her diligently followed drug regimen (and the superlative care my dad provided). He was literally dying of cancer and she was the sick one.
I didn’t just go down when she was hospitalized, I would visit for a week every month and I did so out of duty and great love for my father, who as so many caregivers, pre-deceased her. On his deathbed, I promised him I would be there for her and gave him permission to let go. Our visits basically consisted of my driving her to her various doctors’ appointments, the hairdresser, a lunch or dinner out and maybe a movie. She tired easily, mostly because she lived a totally passive existence, living only to spend hours getting ready to go out and show a good face to the world. There were times I’d watch her putting on her make-up and see the exhaustion set in. She was never moved to try and get stronger. I was at my wit’s end trying to motivate her to do something pro-active.
To say we had a contentious relationship is putting it mildly. On my 50th birthday we actually came to blows. She took the first swing. I knew if I took a swat at her, she’d break. I may have detested her, but I didn’t want to hurt her. After all, she was my mother. So, how did I do it? How could I possibly have been kind to this woman with no redeeming qualities?
I credit my sister-in-law with giving me the key to surviving a situation I could not escape. “Just agree with everything she says. Treat her like she’s a crazy woman and appease her. Don’t take the bait.” It was that simple.
For example, my mother loved harping on the poor character of my father’s family. Before I changed my mindset, I would have argued otherwise—knowing my opinion would fall on deaf ears or lead to an argument, I learned to utter “Uh-huh.”
This tactic worked face-to-face or over the phone. When my father was alive, I would avoid calling because I hated the way I felt before, during and after we’d speak. The guilt for not calling would build up and I knew what would be waiting for me on the other end of the line when I’d finally phone. Once my dad died, I called very frequently, but the daily barrage of complaints became unbearable. I asked her “What can I do to make your life easier?” My mother said “Call me every day.” Despite the way I felt about her, I knew that a two or three minute call to say hi, fill her in on my day and let her live a little vicariously was far easier than hearing her bitch for a half-hour.
It’s twelve years since she died. “Ding dong the witch is dead.” Horrible to know that’s how I felt when she passed. But I took good care of her. I was her advocate. I was her counselor. I may have been the only friend she had left in the world—she’d pretty much alienated everyone else.
Funny though, every now and then I’ll get a pang in my gut at 8:00 p.m. and gasp “I’ve got to call my mother.” We do what we gotta do.
I just finished making a new medication chart. There’s fresh bedding in the closet and food she likes in the fridge. Made some calls to assure she has care round the clock if I must be otherwise engaged. The physical therapist I found will make house calls. I’ll have to go with her to the doctor’s for laser treatments on her spine.
She needs bed rest for two months and with all the meds, that shouldn’t present any problems. I’ve got to watch for bedsores, of course, so I got a sheepskin to keep her comfortable and sore-free. It’s a lot harder to get her out of bed and on her feet walking—which is also part of her therapy. I learned how to give her the massage treatment she needs three times a day and so far, she’s enjoyed that.
This is going to be a long convalescence. Dr. Brower said it could take as long as a year before she’s back to normal. He’s her surgeon and is absolutely wonderful about taking the time to talk to me and explain what’s happening. He said the paralysis is most likely temporary, but it’s awfully scary. I’m just waiting for a sign that she’s improving.
Of course I understand there’s a chance she won’t regain the use of her legs. One can never be fully prepared for the worst—but we’ll make the best of whatever happens. I’ll either be in caregiver mode for a few months or forever. As a caregiver, I’ve learned to go with the flow.
But, I don’t have a choice. Schatzie’s my sidekick; my protector; my loyal companion. I really didn’t expect to be a full-time caregiver again, and I pray that she makes a full recovery. It doesn’t matter that’s she’s a dog; I’ll be her caregiver as long as I have to. It’s who I am. It’s what I do.
Time for her mid-day massage!
When I first conceived of The Caregiver Space, I was going through what I perceived to be a rough patch. I needed to be available to my husband and his mother, both cancer patients, 24/7. It took about six months before I began to look for support online.
The Internet then wasn’t what it is now, and finding what I was looking for was far from easy. The group I finally found changed my life and I knew that once Steve and his mother passed, that I would dedicate my life to making it easier for other caregivers to find a space to just be. It was meant to be a place where anyone who was a caregiver could come to find likeminded individuals to share their experience with. It was meant to be a place for all caregivers, of any description.
At that time, I had no idea there were over 65.7 million family caregivers in the United States. I knew that as difficult as my life was at the point when I sought help, there had to be a lot of people who had it a lot worse than I did; after all, I had more resources than many caregivers. Sure I was always on call, went to every doctor’s appointment, every level check, every CT scan or MRI. I managed their meds and insurance claims. I was there to make sure the two people I was caring for were as secure and as comfortable as possible—same as most caregivers.
Despite the economic and geographical differences we each have, I figured there would be a common bond and that if the site existed as I envisioned it, that we would support each other and do what we could, as a group, to make our lives a little easier.
Last week, Allison posted an article that shook me to the core and I’m taking it very seriously. It addresses the fact that many of our members and users are being mean and judgmental about other caregivers. It had never occurred to me that there would be people comparing their plight to that of others, and demeaning others’ situations instead of finding the common ground on which to support each other.
No two caregiver cases are alike. Every one of us has a unique story. We want to acknowledge that and keep the site from becoming a competitive, unsupportive and uncomfortable place. Why would you go someplace where people could be mean and hurtful in a time of need?
Many years ago, my husband had been in a motorcycle accident where he badly injured his foot. I was working full time. My life was turned upside down in an instant. For the first two weeks of his recovery, I had been thrust into the role of full-time caregiver. Once he was home, I returned to work part-time, taking hours off every day, treating his wounds morning, noon, and night and going to appointments with all of his doctors. My life was as intense as it ever was when I was caring for him at the end of his life. However, I knew he would recover from the accident. When he was a cancer patient, I knew that the end would be his death. That was the only difference.
No one can tell me that for ten months my life wasn’t hell. It was before the Internet existed, so there was no chance of finding online emotional support. I’m sure there are parents, spouses, friends and relations who find themselves in the position of temporary caregiver and there are many long distance caregivers who should be welcomed into our community for as long as they need us.
There is no question that some caregivers have it way worse than others, but does that mean that those who have it “easier” don’t experience very real pain? Does it mean their lives aren’t totally disrupted and that they’re not completely overwhelmed? Does it mean they don’t qualify as caregivers? Of course not.
So why judge? Why not experience the positive sensation had when sharing something helpful or just saying something kind vs. ugly, angry manifestations that fester with criticism and judgment?
You’re welcome to use the forums for angry, frustrated, get-it-out-of-your-system rants. We know you need to let it out—do it there.
Allison’s post points out that “Negativity will poison this community.” She’s right. We’re already in delicate emotional states, why pour salt on others’ open wounds? We all have problems—there’s no sense in comparing them. It doesn’t help anyone and helping others is what this site is all about.
As a caregiver, my life was filled with unknowns.
Would the questions that caused my sleepless nights be the problems I’d face in the light of day? How could I know what my life would be like when my caregiving days came to an end—I knew that would soon be the case. There were no miraculous cures waiting.
Should I pray for more time or less pain?
Steve and his mother Sylvia would die and I’d be left—but with what? My life was consumed by their cancers. What would be left? Self-care, sure, but what else? Tonight I decided to clear out a drawer in my nightstand and found a “quotable card” I must have left for myself to discover when I most needed it.
It has a proverb I want to share with you:
“Just when the caterpillar thought the world was over, it became a butterfly.”
My husband, Steve, was in the hospital for a collapsed lung after he’d had an ablation procedure. His dear friend Alex, always a first adopter when it came to technology, sauntered into the room to visit, with his brand new iPad in tow. “You’re going to love this. And she’s going to love it. You’re going to need to buy two” —the she, of course, was me. So before he’d even left the hospital, two iPads had been ordered—His and Hers—which would be delivered to our home in a day or so.
I didn’t know it at the time, but this tablet would prove to be a sanity saver for me. Never one for video or computer games, as Steve’s condition began to worsen and I began to spend more days and nights with him, I desperately needed a form of distraction that I could easily pick up and put down; something that was fully portable and would not insult my intelligence.
I desperately needed a form of distraction that I could easily pick up and put down; something that was fully portable and would not insult my intelligence.
I couldn’t stay focused enough to read and knitting required me to count—something I had no patience for at this point. So, against my better judgment I searched out a few word games on the iPad. This was an “AHA!” moment of the highest order. I started out with anagrams and jumbles—Word Warp in particular—and found this made time fly, but soon found it less than satisfying. And so it was onto the deliciously addictive Words With Friends. In no time flat, I was juggling ten games at a time, chatting with total strangers, developing online relationships that made me feel just a little less isolated.
When Steve went into the hospital four years ago for the last time, I stayed with him around the clock for almost two weeks. He had few visitors, many of his friends having tired of the hospital experience, and we both found comfort in the company of our iPads. And so we sat, day after day—me playing Words With Friends ‘til my eyes crossed and him playing Hearts, Mah Johngg, solitaire and backgammon. Him and me. Until there were no words.
Steve was clearly in pain. He was staring at himself in the bathroom mirror and screaming at the top of his lungs. He’d diagnosed himself with yet another bout of diverticulitis and had been self-medicating for days to no avail. He wasn’t getting better. He may have been at his wit’s end, but I was going to be the one to have to rescue him.
I called our gastroenterologist who told me to get him into a cab to go for a CT scan. Meanwhile, Steve is screaming “No hospital! I’m not going into the hospital!” but it was becoming apparent to me that there was no alternative. I didn’t see how a cab ride in heavy traffic to go for a test was going to help things. I had to make an executive decision—after all, I had Steve’s Health Care Proxy and I was the one thinking clearly.
I picked up the phone, called 911 for an ambulance to take us to the hospital where we had “our” doctors. A city ambulance wouldn’t take us there because it was out of their “emergency response zone.” I needed to authorize the significant expense of having a private ambulance service pick us up. Done.
Next. Call the doctors to alert the emergency room that we were coming and that he would be admitted with an attending physician. This would save us time on the receiving end. Done.
Next. Pry Steve away from his sink and get him dressed. This was no easy task. He was still insisting he wasn’t going to any hospital. I had to take charge now and get him to go. I told him he didn’t have a choice; I had no idea how to stop the pain; I wasn’t a doctor and neither was he. It was interesting that once the ambulance arrived, he was remarkably cooperative—even charming. Phew!
Next stop…the emergency room. They had gathered all our information in the ambulance, so we were whisked into a cubby and a morphine drip started immediately upon our arrival. By this time, the doctors I had notified were checking in. He certainly needed a CT scan to see what was causing the pain. Then he’d need emergency surgery. So at last, it was time to face the real consequences of being the one who had to make the hard decisions—some might be life or death decisions.
The surgeon handed me one form after another; it felt like I was signing my life away. Yes, I understood the possible dangers of the anesthesia. Yes, I understood there are always risks involved in surgery. While the weight of this responsibility was getting heavier and heavier, we’re kept waiting for hours before the scan could be done. Steve was given more and more morphine and without relief. He’s not screaming any more and the drug has calmed him down to the point where he’s no longer protesting. Finally Dr. V, the surgeon who’s been called in, got really fed up with the ER staff. How long did a clearly critical patient have to wait before he was taken in for an “emergency” scan. He took matters into his own hands. I swear I could have kissed him. He pulled the gurney out of the cubby where we’d been waiting for hours and pushed it through the emergency room, to the doors down the long corridor leading to the scanners and moved Steve up to the front of the line.
He stood and watched as the scans started to show up on the technician’s monitor and came out to tell me Steve had peritonitis and required immediate surgery that would take about three hours. I was left to wait. And wait. And wait. Three hours became six and I was really starting to get worried. It was three in the morning when Dr. V came out of surgery to speak to me.
Steve had come through what ended up being difficult surgery well, but would be in surgical intensive care for a while. I would not be able to stay with him. He’d need to be kept in an induced coma so that his body didn’t have to do anything but heal. But…there was no guarantee that all would go well. There was still the risk of infection and high fever. I needed to sign many more permission forms.
I had no doubts that whatever I put my name to was in his best interest. But intubating him would be dangerous and administering the drugs to fend off infection and ease the pain needed my okay. Steve would sleep through all of this, but I was left to worry about all the “What if’s?” Was I right to rush him to the hospital? I was. There was no real choice about signing for the morphine in the emergency room to lessen the pain, right? And I had to sign acknowledging I was aware of the dangers inherent in surgery and anesthesia; again—what was the alternative?
For the days that followed, I’d arrive at the hospital at 10:00 am. and leave at 10:00 p.m. He didn’t move. The sounds from the monitors and leg compression device drove me nuts. As they pulsed and whooshed, my self-doubt came in paced waves. What if he woke up with brain damage? What if infection did, in fact, set in? We’d come to the hospital Tuesday late afternoon and late Friday afternoon, the doctors came in to tell me to go home and get a good night’s sleep; to rest up for what promised to be a difficult weekend. If Steve survived the next couple of days, he’d most likely recover. This less than “iffy” prognosis brought with it a monster bout of anxiety. Had I done the right thing? Of course I had. Was I consumed with guilt because of an unclear outcome? Of course I was.
That’s what happens. You do what you have to do, make the tough choices and breathe through the fear, hoping it’ll all be okay in the end. There were lots of little decisions I had to make while Steve was out of it. I felt every one I made had been a clear-cut choice, but that didn’t keep me from questioning my judgment over and over. And I had so much time to sit and second guess myself.
I felt every one I made had been a clear-cut choice, but that didn’t keep me from questioning my judgment over and over.
Then, there was the fear of how Steve was going to react to all the choices I’d made on his behalf. How would he rate me? His state of mind and wellbeing were of paramount concern to me, but would he believe that? When he woke would I be faced with an ill-tempered patient who just tried to criticize and second-guess me? I sat with all of this going round and round in my head for six days. I’d had my best friend find a knitting store near the hospital so that I could busy myself with a project to act as a distraction. There was no TV in this ICU suite. I couldn’t focus on reading. Knitting would have to get me through, and it did.
Then there was Steve’s 88-year-old mother—still very much alive at this point in time. She had a great need to be at her son’s side, just to have eyes on him, despite the fact that he was unconscious. Despite my offer to send a car service for her, she’d taken a commuter bus from Brooklyn to Manhattan and back again, every day to just sit there and watch him. This four-hour round-trip on public transportation was going to wear this octogenarian out. And then I had to deal with all of her doubts about the choices I’d made and all of her fears about what was going to be next. This aggravated me, to say the least, and I finally told her to stay in Brooklyn and take a break for a day or two. I’d call her every hour to fill her in but I wouldn’t have to keep her calm on site. And, most irritating of all, she was very free with her criticism of my knitting!
Well, Steve survived the weekend and I was told they’d be waking him up over the next day or so. My fears were unfounded and his gratitude for my choosing the right course of action was profound. They moved him to a private room and I was able to stay with him from this point on. There was much information to digest after he was alert and we felt like a team again. He never once said, “You should have…”
For one very intense week, I had been in charge of Steve’s life. I had weighed each decision I’d made on his behalf very carefully, yet I sat and worried. Could I have made mistakes? I was open to that possibility, but really didn’t think I had. There was just so much time to sit and ponder what I had done and what the consequences of my actions might be. So…what if I had made mistakes? Would I be able to forgive myself? After a serious review of my actions, I was pretty sure I’d made the right choices—albeit under pressure—and that if something had gone wrong as a result of my actions, I would be able to live with it and forgive myself.
When Steve was discharged, we were given lengthy instructions on how to care for him at home. A Visiting Nurse was sent to administer care to his wound for a few days, until she saw that I could handle it myself. I wasn’t the least bit squeamish and she watched me do dressing changes several times before she felt her work was done and that Steve felt secure in my care. I passed with flying colors.
Postscript: One of my dear friends became a grandmother while Steve was unconscious, and the baby sweater I had been knitting found a loving home.
During the course of my husband’s illness, I so longed to hear “How are you doing Adrienne?” Never happened. What I did hear was “So, how’s Steve?” or “How’s treatment going?” or “What’s the next thing they can try?” I got used to it. I was the caregiver, and by assuming that role, I was also the “town crier” and the go between with all the information friends really wanted to know. They couldn’t ask their old friend because it was too upsetting for him. It wasn’t idle chatter; it was genuine concern. It was my job to fill them in.
I think I would have been happy if someone had just said “It must be hard for you,” but no, I didn’t hear any of that either. However, being in the company of friends, regardless of what the topic of conversation, was always a kind of lift for me in and of itself. Steve’s friends cared about Steve, and they loved me for being the caregiver that I was (among a multitude of other reasons, of course).
In all of the six years of caregiving, I don’t think I was ever the center of attention. So, I had to get centered. I had to be so thoroughly committed and focused on “them” that over time I created a bag of tricks that would help me cope. As much as a person in the throes of caregiving can be happy, I needed to try and take charge of that myself.
I read and read and read. There are a few books on resiliency that were very valuable to me. I can’t say that “Well, we’re going to have to do some targeted radiation” was the easiest thing to hear, but I had to integrate it and “own it.” This would happen and I would get through it. It’s how I got through it that’s important.
Breathing, meditation, and positive visualization were absolutely key to my health—both mental and physical. They helped me cope with the stress that would never totally vanish. There are many breathing techniques and they’re all good, but I suggest you look up “circular breathing” and learn how to do it. Valerie Johns has a site where you will find some instruction on “circum-respiration.” This breathing will lead you into a meditation.
Then there’s my own personal favorite, “Visualize yourself in your perfect place of relaxation,” a technique I learned in Silva Mind Control. It’s actually fun to do as well as extremely rewarding. I breathe to relax until I’m ready to picture myself on a beach; I’m assuming it’s a beach, my back is to the water, but I’m sitting in sand. I’m looking up a hill through the snow-fencing you see at the beach at the top of a dune. Beyond the fence is my perfect house—because it’s all in my mind I can make it look any way I want it to; have anything in it I want; have it full of people or just me. My house has a central foyer and five long hallways off the foyer like the spokes of a wheel. Down the corridors there are lots of doors and behind the doors I will find whatever or whoever I want to see there. Or, I can be surprised when I open the door and find whoever will be able to help me through a problem. I’ve found everyone from Marilyn Monroe to Eleanor Roosevelt to Einstein.
Sometimes I just decide to go down to my “laboratory.” The lab is an absolutely essential part of every perfect place of relaxation. I have equipped my laboratory with tons of books—it’s really more of a library than a laboratory, but I’m there for discovery and answers. I’ve been instructed, as part of this method, to have an elevator that opens directly into the lab. I’m supposed to ring for the elevator and whoever is on it is the person I need to see and ask questions. I’ve had Walt Disney, Walt Whitman and Will Rogers as guests, among others.
All of this is wonderful fun since you’re in control—even of the unexpected guests that have been conjured up by your subconscious. The idea is that talking with my visitors and finding the books with the proper references or making imaginary potions to fix things I have no real control over, leave me in a very positive state of mind.
So we get to the question “Am I happy?”
I have to say the answer is sometimes – even through all the really tough going. I have my wonderful visualizations when I meditate, so I have a place where things are as I would have them. And then there’s always the list technique. Barbara Ann Kipper has compiled a list of “14,000 things to be happy about, or The Happy Book” which is published by Workman Press. If you have trouble thinking of positive things in your life that you can be happy about while going through very trying times, it helps to be able to pick up someone else’s list of simple pleasures. Some of these are as simple as “fresh fruit pancakes,” “rural roadside stands,” “fairy tales,” and “porch swings.” The list isn’t quite endless since the title limits it to 14,000 things, but everything on the list gets you associating pleasure. Just focusing on something other than your caregiver plight will lift your spirits.
For me, the single most important thing to being happy, or at least finding moments where I found I was happy, was to keep my relationship with MY friends as far apart from life with Steve as possible. Of course they were concerned, sometimes consumed with Steve’s illness, but they were always thinking of me. We’d meet for lunch, or they’d come up to my apartment if I couldn’t leave the house. We’d just take a drive or go for a walk through the park just two blocks from my place. I needed them to be my normal. I needed to rely on my friends for news from the outside world and tales of their own families. Steve would have been uncomfortable letting one of our friends care for him, even though it might have given me a break. He was too proud for that. If I’d needed them to be there to sit with him “just in case” they would have been happy to do so. But I really didn’t want to have to call on them. When I found myself in hospital waiting rooms during surgeries, my friends were always by my side. They were always the first to visit Steve after whatever procedure he might have had. They knew that their attention would bring miles and miles of relief for both me and my husband; but after a quick “How are you feeling?” they kept the conversation light and strictly non-medical.
I know there must be a lot of you who need your friends to be part of your caregiving support network in a “Johnny on the spot” way. I was lucky. I wasn’t taking care of children and their schooling and extra curricular activities. I didn’t have to go to work every day; I could take care of business via my computer and my home office. If you have a support network of caring friends and family, they can still bring the outside world to you and your patient. Talk doesn’t have to be about hospitals and doctors and treatment.
So breathe, meditate, be grateful for small things (make a list for future reference) and let your friends bring you a bit of normal. Whatever that is!
Strains of “It’s the Most Wonderful Time of the Year” underscore a commercial on my television—as if I really need to be reminded. Now, I’m not a “Bah! Humbug!” type of person, but these past few years, Christmastime hasn’t been so ho, ho, ho.
As I write this, it’s been three years and nine months to the day since my husband Steve died. I did a lot of anticipatory grieving in the wake of his cancer diagnosis, and despite the fact that there were a couple of “good” years in the five-and-a-half years he was ill, the doctors had made it quite clear that his type of cancer was one that would most assuredly recur. We had been handed a death sentence without a date of execution.
My job as a caregiver was to make his life as joyful, stress-free and simple as possible. When it came to holidays we celebrated with gusto and hosted party after party, even going so far as to create our own occasions to rejoice with our friends. But there were always dark thoughts in my head around the holidays. Is this his last Christmas? Will we be able to celebrate Thanksgiving together next year? What will the New Year bring? Remember, I had been told that his cancer would kill him and though I needed to be bright-eyed and cheerful, I was still living with a ticking time bomb.
But there were always dark thoughts in my head around the holidays. Is this his last Christmas? Will we be able to celebrate Thanksgiving together next year? What will the New Year bring?
I had done a lot of reading—the “what to expect when your loved one dies” type of reading—telling me what I could anticipate a life without him to be like. Books and articles suggested how I would feel, what I would do and even what my friends would do. Life was a blend of reality and hope, and I was, if nothing else, a realist. My own control issues led me to prepare as much as I possibly could, so that surely my transition would be smooth and by-the-book. I never expected that people could grieve by-the-book. Especially me.
No doubt all of my preparation helped me when I needed it, and I encourage anyone going through the grieving process to join a support group, journal about your feelings, and be kind to yourself; but I recognized my life had revolved around this man for more than thirty years and there was a real gaping hole in my life where the man and the caregiving had been. Continuing to get support, to write and to ease up on self-expectation were key, but healing and grieving do not happen in a vacuum, and my friends were very much there for me.
I had a birthday a month after Steve died—I got cards and flowers and was taken to lunch and dinner. I really didn’t want to do anything except sit home and feel sorry for myself, but I was smart enough to drag myself out and be in company. I had been duly warned that the “first year is the hardest.” My datebook was marked with holidays and birthdays and special events, like the day we would be opening my summer house. Oh no—it wouldn’t be WE. Instead, it would be my first summer as a widow. I’m a widow now. I AM A WIDOW. Wherever I went that summer, people would ask where Steve was. I had to be the bearer of sad tidings and comfort them. As for me, I invited friends out to spend weekends to fill the void. They came. The pages of the calendar were being counted as “Steve has been gone for one week,” “…for two weeks,” “…for three,” and so on. The first year he was gone, I made note of the weeks. The occasion of his birthday in August was to be celebrated by a group of his friends from the old neighborhood, but Hurricane Irene put a stop to what would have been a great weekend and we all had a celebratory dinner instead. But when it came to his actual birthday, I was left alone to grieve.
At summer’s end, the Jewish holidays came and friends made sure to include me in their plans the same way they had always included US. Then Thanksgiving rolled around and I was invited to three different dinners. When it came to Chanukah, I lit candles every night, as usual, but gone was the pleasure of having a special gift for my husband every single night—as if he were ten years old. Steve’s parents had never celebrated the holiday and I had been determined to make it special, year after year after year. Then, just like that it was Christmas and friends made sure I had somewhere to go for Christmas Eve and Christmas Day. A week later it was New Year’s Eve and for the first time in a long time—there was no one to kiss when the ball dropped in Times Square. Sure, I was invited by close friends to spend the evening with them—we’d all outgrown raucous parties long ago—but dinner is one thing and that mandatory kiss at the stroke of midnight was another.
So we were into the New Year and the next holiday was Valentine’s Day. I got a few cards from friends trying to cheer me, and their thoughtfulness was appreciated; and just like that, the first year was over. I found myself starting to count the months instead of weeks he was gone. Now things would start to get easier. Right?
Wrong! I began to wonder if I had done something to offend my friends. They had moved on. They weren’t really worried about me any more, because after all, I had gotten through the first year with flying colors. The second year was fast becoming the loneliest year I had ever known. I was determined to build a fulfilling life for myself, but it was exhausting. It would take time; I understood that now. I also knew I needed to be proactive in my new life; I couldn’t expect to wait for others to ask me to join them—I learned to make plans for myself. I never had problems going out to a restaurant alone and that was a big plus. I’d create weekends full of things I wanted to do. When the summer rolled around, it was time for me to make some changes at the house at the beach and if I had company that was fine; if not, that was also fine. Now, I had the feeling that if I’d managed to get through the first year, I’d get through the next year. Each one held its own challenges.
if I’d managed to get through the first year, I’d get through the next year.
When Chanukah came that second year, I made a big party for family and friends. It was a huge success and left me feeling—“Yeah…I am ready do this. I’m ready.” There would, again, be Thanksgiving with family, but this year Christmas was a different story. It was all about the hype and the presents and I really didn’t care if I was part of it or not. When New Year’s Eve reared its ugly head, I had dinner with close friends, lifted a glass of apple cider to toast to our health and happiness and I was content to do so. Then I went home alone.
The third year was much the same as the second and now the fourth has brought me back into the arms of both old and new friends. I think some of them had to deal with Steve’s passing in their way before they could be comfortable with me as a widow. Seeing me get through all of it has helped them.
Lastly, I must talk about how much founding The Caregiver Space has contributed to my sense of self-worth. I finally feel as though I’ve done something truly worthwhile in my life so when one holiday or another is on the agenda, I have the opportunity to write about what it was like for me and hopefully help some of you. For that I thank you more than you could ever imagine.
Just remember that there is a way through what you’re feeling at this time of year and it will keep changing as time goes by. If I can help any of you, you know where to reach me!
I wish you all serenity, joy, good health, and good friends.
Mother’s Day is upon us, and as caregivers we often find ourselves on a roller coaster ride of emotions.
Some of you were lucky and have had mothers who made certain we knew we were loved and encouraged to follow our dreams. If you are now faced with the hard fact that “Mom isn’t herself any more,” the sadness, feelings of loss and sense of powerlessness can be too much to bear.
There’s a quote that goes “Everything I am or ever hope to be, I owe to my mother.” In my case, that’s true—she was a shining example of everything I didn’t want to be and I fought to become a happy and fulfilled individual despite all her efforts to create me in her own image. I know I’m not alone. There are many daughters and sons who go through life trying anything they can to please their mother.
When I became my mother’s long distance caregiver after my father lost his battle with cancer, I felt as if I’d entered a minefield.
Making her happy was out of the question, so I could just do my best—but how was I going to keep my sanity? My sister-in-law gave me a short and sweet lesson in how to deal with the situation: “Treat her like she’s a crazy person and just agree with everything she says.” I began using this technique and it worked. I quickly learned not to “take the bait.” She thrived on conflict and I wanted none of it; so if she started to give me her “poor me” act at breakfast, I’d just go along with it. Instead of engaging in constructive problem solving that would be thwarted, I’d reply, “Yes I know. It’s not fair. It’s too bad.” I just wanted to avoid arguments at any cost.
I was spending a week each month with her in Florida. She had COPD and was genuinely ill, but she’d been given two years to live and was still around eleven years later. My father had been a doting caregiver and their life together had become a game show—“Whose Sicker?” Who takes more pills? Who sees more doctors? What a horrible competition…
When my dad died, I felt my mother’s disbelief, and she had a “I guess he wasn’t faking” attitude.
But a week each month wasn’t good enough for her and she complained no end. I had to remind myself she was “a crazy person” and I didn’t take it personally. Of course it made me angry, but it no longer hurt. Once you know the lay of the land and the cast of characters and their foibles, you learn to deal with whatever comes up. After my father died, my brother and his family stopped visiting my mom. In all fairness, she was not any nicer to them than anyone else. If they were in Florida, they’d stop by for lunch once or twice.
People would ask me why my brother didn’t share the caregiving responsibilities with me and I’d explain that he would only complicate things and make it harder for me to manage her affairs. The only way he could help would be to call her more often. I taught him a trick—call her when you can only talk for five minutes max. Call from a taxi and tell her you’ve reached your destination and have to go. It worked, and the fact that my mom spoke to him more frequently than she had been accustomed to made her a bit less angry at the world.
She was so often in tears on the other end of the phone when we spoke– I asked her, “What could I do to help?”
She had an aide come in every day from nine to six; it’s not like she was alone. The one thing she said I could do to make her life better was to call her every day. Every single day. It seemed impossible, but I began doing it. Instead of long tear-filled conversations, we’d have a “Hi, how are you today”-“I’m okay, how are you?” two minute chat. A simple solution that made both of our lives easier. Ten years later, I will occasionally feel a jolt at eight p.m.—“Oh no! I forgot to call.”
It’s not news that very often the burden of caring for a parent falls on the daughter, but when there are two sons (and one daughter-in-law), one of them has to become primary caregiver. And, when one son is geographically closer, he (and his wife) are the logical choice. When the other son pays an occasional visit, the parent—almost invariably—is delighted by it. So the two brothers have “issues.” The bickering is never-ending.
My friend in New York recently lost her mother in Florida. She was her father’s and then her mom’s long-distance caregiver for years, and at times would stay with them for as long as a month. The thing is, she has a brother who lives in Florida and never even checked in on mom—not even a phone call once a week. But now the brother and sister are going to court over the estate, so the rivalry outlives the parents.
I know a brother and sister who had a rotten relationship while their parents were alive.
When the time came, the daughter became the primary caregiver. She worked, had a family and cared for her folks, but was taken for granted by everyone involved. Her brother was there for their mom and dad occasionally, but it wasn’t until after both parents passed away that the siblings began getting along. It’s not unusual for parents to play one child against the other (though they may not realize it) and it’s very counterproductive.
And then there are so many of us with extended families. Mothers with second husbands and husbands with second wives and all the children and step-children that so often complicate life with anger and resentment. I’m always amazed to see how well some people successfully manage to wrangle extended families into a working circle of caregiving when called upon in a crisis.
Just remember that at The Caregiver Space we’re all about listening to and sharing stories so that you know that despite the fact that you may feel totally isolated, you’re not. You have a family of caregivers who can relate to what you’re going through and can learn from what you have to say.
Photo credit: Sasquatch I
“So… how are YOU?”
That depends on who’s asking. I mean, do they really want to know? I’ve already spent at least ten minutes bringing them up to speed on my husband’s health and still wasn’t through.
“He’s been through a lot. There was the surgery for the perforated diverticulum in November which left him with a temporary colostomy.” She cringes. “And that was when they discovered the lung cancer. The CT scan was aimed just high enough for them to see the cancer, and thank God they did. They caught it early.” Okay; almost finished with part one of how Steve is. “It’s his body, but I guess we’ve both been through a lot.” I was trying to turn the conversation to the “we” vs. the “he” at this point. “When we started looking for an oncologist and a surgeon, they told us we’d first have to wait ’til the other surgery healed before they could start on the cancer. Altogether, we should be finished with three more surgeries by the end of next year. Then we’ll have a better idea.”
That’s the condensed version of the reply to the sympathetically asked question: “How is he?” There was no way to explain how I was without first explaining how he was. In most conversations, my evaluation was interrupted with prodding questions looking for still more detailed information from the interested party and generally took a half an hour to relate. IF they asked how I was doing, I first needed to do a mental inventory: friend or family?
My friends? Well, they genuinely cared and were always up to speed. My family? They cared, but I usually hedged a little because I didn’t want to worry them and doubted they’d be able to do anything to help me anyway. His friends and family really wanted to hear, “Oh, I’m fine. A little tired, but fine,” because except for the rare two or three I knew I could always count on, the questions were a matter of good manners mixed with morbid curiosity. There was always the kiss-on-the-cheek goodbye when they’d whisper in my ear—“Just let me know if there’s anything you need.”
I had decided, not long into the process, that I would do my very best to make my friends a “normal” place.
They were by my side when I was in crisis mode, and they were there without being asked. I had, however, sensed early on that “normal” was not going to be an easy commodity to come by once we got going with surgeries and treatments for the cancer. I wanted to be able to pick up the phone and speak to my nearest and dearest about their children and grandchildren. How was golf? How was work? Retirement? Their new hobby? This plan ended up working very well for me, and on a good day, we might even be able to meet for lunch and have it feel like old times. They didn’t need a play-by-play re: Steve’s health, and if they insisted I’d keep it short.
If my friends asked how I was doing, I’d sort of give them a “You’re not serious, are you?” look and divert the question. They knew, whether from personal experience or articles they’d read in Oprah, that: 1) a caregiver’s life is very tough and 2) there were pages and pages of articles devoted to reminding us how important it is for us to take good care of ourselves. (Like we couldn’t figure that out!) Easier said than done. For me, having friends be my normal was an important piece of self-care. When I needed to rant however, they were always there to listen. I wasn’t asking for advice—just a sympathetic ear; an understanding nod; a good hug.
In the nine years since Steve’s diagnosis, there is much more caregiver-centric information available in print and online. Friends and family of patients with just about any condition can find material that can help them begin to understand a caregiver’s life. I got tired of telling people Steve’s story—and in all honesty, Steve didn’t want me telling his story to anyone. It was private and personal; if they wanted to know how he was, he preferred my telling them to “Ask Steve.”
The most difficult part of the “How are YOU?” question is how to answer when it comes from the person you’re caring for.
I never wanted my husband to worry. I was all “stiff upper lip” and such. He knew I was tired and frustrated, but he also saw that I just kept going. Until I couldn’t. When the time came and I asked for help, he knew I needed it and made sure I got it. I was lucky—until just three weeks before he died, he was totally in his right mind and we talked about almost everything. My time with him the last year of his life was probably the most satisfying year of our thirty-two years together. He’d always known I loved him, but he’d never really gotten how capable I was. He had taken the fact that I did “everything” for granted. So, our last year was one of mutual respect on a whole new level. When he’d ask “How YOU doin’?” he’d get an honest answer.
I’m a self-starter and like many caregivers, found it hard to ask for help.
When I finally recognized the toll the cumulative emotional strain was taking on me, I looked for an online support group. I couldn’t commit to a face-to-face group—it wouldn’t be fair to other caregivers if I didn’t show up—and it seemed I needed to be on hand at home, more than not. I was lucky to find a group of people going through what I was going through. I didn’t have to spend half an hour explaining Steve’s condition because this chat wasn’t about Steve. It’s hard to delineate the caregiver-patient equation, but they are as unique as they are symbiotic.
When these women asked how I was, they really wanted to know—and I could give them an honest answer: I was tired, frustrated, and angry for sure, but I could talk to Steve about that. What I couldn’t talk to Steve about (until very near the end of his life) was how scared I was, not just of the day-to-day problems, but about what my life would be like “after.” I needed to learn how to talk to Steve, so he could hear me, about his business and our finances. These were very threatening topics—particularly scary for him—and my online friends knew the language I should use in order to comfortably open a channel of communication.
Because of my weekly chat, Monday nights from 8:00 to 9:30, I was able to keep my wits about me.
I had people to contact if I began to freak out or if I had test results to brag about. Not everyone understands how those little triumphs get you through some very bleak times.
That group is what led me to found this site. This kind of collaborative, supportive mindset cannot be overrated—these were people who really cared how I was doing, while they fully understood that my life was all about caring how Steve was doing. I joined those women every week for a year-and-a-half, and as concerned as we were for each other’s welfare, the words “You know, you have to take care of yourself first” were never uttered.
So… How are YOU?
Let us know in the comments.
If we do not know how to take care of ourselves and to love ourselves, we cannot take care of the people we love. Loving oneself is the foundation for loving another person.
– Thich Nhat Hanh
Wouldn’t it be nice if all there was to setting personal boundaries was simply a matter of knowing when to say yes and when to say no?
Well it isn’t, and as caregivers we are constantly bypassing boundaries we might have set for ourselves. From day to day, it’s hard to know what our limits are. It’s hard to stick to your guns when the playing field is constantly changing.
For years and years in therapy, I tried to put into action what I knew to be true. My life was about making everybody else happy—no matter what the cost to me. I needed to summon the courage to risk disappointing my husband, clients, family and friends—by setting healthy boundaries and not putting the rest of the world first—because it was the only way I could ever take care of and love myself.
I prided myself on being a mind reader, able to anticipate everyone else’s needs and desires—and their pleasure was my pleasure. Except that it wasn’t. I was slowly becoming resentful and angry, and so many arguments were basically “Look at everything I do for you,” which would be met with the reply “Who asked you to?” When and how had I become responsible for everyone else’s happiness? It was high time I took charge of my life and took responsibility for my own happiness. This was hard work.
I had to learn how to say “No”—let alone when.
When the pain of doing things the way I had always done them, became greater than what I anticipated the pain of changing would be, I finally took action. Little by little, I set boundaries. I learned to tell others what I wanted and what I would and wouldn’t do—whether or not I could do them. There were a lot of people who wondered where “the old Adrienne” had gone. I had been trying to take responsibility for their comfort for so long, that when they experienced discomfort when I finally said no, I had to be prepared for the consequences. Would they still love me? Their discomfort had been my discomfort and I’d have to watch them hurt and go through this experience time and again before both sides of the new comfort zone became the norm.
Once I realized I’d been codependent with pretty much everyone, I used some of what I’d learned in 12 Step programs to fuel my resolve. I questioned what I was powerless over—like everyone else’s problems—and became serious about finding a new, healthier way of thinking and living, aided by taking a “fearless moral inventory” of my behavior.
Things were going pretty well. I was stronger; more centered and more confident. I learned that “No!” is a complete sentence. I found I could deal with all the things that I had been avoiding—after all, now that I wasn’t spending all my energy taking care of everyone else, I could deal head on with my own problems. Of course my “to do’s” had been put on the back burner, since everyone else came first.
It really felt like I was on my way to fulfillment— that’s when life threw me a curveball.
My husband, Steve, was diagnosed with lung cancer and I was forced to become responsible for just about everything, once again, except his business and our finances. In sickness and in health, right? Where do you draw the line when your loved one is terminally ill?
It’s said “Love expands; it does not limit itself to boundaries.” I’d worked so hard to stop making his needs more important than my own, yet now found myself having to come up with a new set of rules. It seemed the only rule had to be there are no rules. But I made a promise to myself that I’d ask for help when I needed it. I sometimes felt I was capable of superhuman feats, so I needed to be careful not to fall back into my old pattern. Happily, the changes I’d worked so hard to make were acknowledged and respected, and even the most gruesome tasks were ones we tackled as a team. Instead of needing boundaries to know where I ended and Steve began, sharing became a way of life totally unexpected by us both.
Loving myself had paid off. I had learned to say no and was still loveable (imagine that!). I knew when and where to draw the line. The world of cancer we found ourselves in could not be tainted by resentment, frustration and anger. We both knew “…’til death us do part” would be sooner than we had expected and did everything we could do make the time we had count.
The holidays are fast upon us, and many caregivers are faced with the question of how to make the most of this difficult time.
Last night I came home to a mailbox full of magazines and catalogs showing families with smiling faces gathered around festive tables; families whose biggest problem is what to get for the man who has everything.
It was really upsetting to flip through all these publications without finding a single helpful article on how to handle the holidays when you’re unable to celebrate the way you used to. Whether you’re the one who always prepared a Thanksgiving feast or someone who cherishes family time during Hanukkah or Christmas, your celebration will be impacted. So… what can you do?
I know when I was caring for my husband Steve and his mom, I tried to keep things as normal as possible for as long as I could. I had to start “abbreviating” the scope of my gatherings without totally eliminating them. There was even one year when we ended up ordering in the Thanksgiving Special from our local diner. It was clearly a difficult time if that’s what we were reduced to, but we were together and made an effort to be as cheerful as we could.
Once Steve was diagnosed with lung cancer, I began focusing on how to make the changes in our lives as seamless as possible; to keep a sense of normalcy was my ultimate goal. I’d always bought him gifts for every night of Hanukkah because it was such a treat for him. It didn’t really take any extra effort on my part and was a pleasure for me as well—so, I kept this tradition going. To create a festive mood, I’d get bundles of holly branches and hang some simple homemade ornaments on them for Christmas.
But as time passed and I became an exhausted caregiver, the holidays were scaled back more and more.
It’s an unhappy fact that people in general don’t want to be “brought down” by the uncomfortable truth of illness amongst their family and friends. Sometimes their nod to the ailing will be a phone call instead of a short visit. None of this is contagious. It seems that what they’re really afraid of is the reality that “This could be me.” If that’s the case, how would you feel if you were written off by those who were closest to you because they didn’t want to feel uncomfortable.
I’d prepare myself for this time of year by lowering my expectations; by thinking that any joy I could bring to the occasion was important. I’d gird my loins for the free-floating anger that filled the house. I understood it and had to let go of my own disappointment and anger, if I was to be the source of light and fun. If we were going to have any guests, I’d have to bring them all up to date—in advance— on how they could expect to find my husband and his mom. One thing I tried very hard to do was to keep health issues out of the conversation when we had company. Of course our guests were concerned, but I hated thinking of Steve and Syl having to recount their latest adventures at the hospital. The holidays were meant to be happy, and I worked tirelessly to that end.
With at least a third of the U.S. population acting as family caregivers, I for one would like to see more attention focused on helping this population cope with the holidays and the stress they bring.
Sitting around and reliving cherished memories through photos and stories has the potential to bring either cheer or gloom; of course these reactions will be unique to every situation. Caregivers need to evaluate the kind of response each holiday activity might evoke.
It’s a hell of a responsibility to have, when all you want to do is make everybody’s day happy.
And that’s why being realistic in your expectations of what this time can bring is so essential. There’s no way to guarantee a happy holiday season, but going into it with your eyes wide open is a good start. For sure, you’ll have to make play-by-play calls to keep your home on an even keel; but remember, you can only do what you can in the given environment. There’s no assurance everything will go as you’ve planned either. This one may have no appetite; that one may need to be the center of attention—family and holidays are fraught with tension to begin with.
So remember, even if your time ends up being disappointing, you did whatever you could.
Adrienne Gruberg, President and Founder of The Caregiver Space
“Mindfulness” is the practice of living in the moment.
Today. Now. So, what about today? When we live conditionally, we miss so much. It’s easy to go through life waiting for the future—after the operation; after the scans; after the chemo—this way of thinking wastes precious time.
During my caregiving years, I spent a lot of time on hold, waiting for this or that to happen and thankfully, I began reading books by Jon Kabat Zinn and Thich Nhat Hanh. It was a time when I found help just when I needed it. I began to find happiness during the most difficult times of my life by living in the moment. I truly managed to find joy in the now.
I learned to speak with compassion—to my husband in particular—but to everyone I spoke with; even the language I used in regular conversation changed. I learned to be honest about all my feelings, and to speak of my problems without blame or bitterness or irritation. Using “loving speech” made it possible for my husband and my mother-in-law to “hear” me, since I spoke in a gentle tone without blame.
And because of this, our time together was well spent. No more petty arguments or empty complaints. Every day was important. Each dawn a new day—as they say.
I also learned “compassionate listening.” In caring for Steve and Sylvia, I let them speak freely and from the heart, and I believe this helped ease their pain and helped them heal. Syl, at ninety, had lived alone for thirty years when she came to live with us, and most of her conversations had been on the telephone, gossiping with her elderly friends. Imagine how different it felt to her to have someone sit with her for hours and hours, just listening to her unload. No lectures, no preaching. No judgment. I just let her speak and heard her. At first she spoke of superficialities and the past, generally keeping to “safe” topics. It took understanding and patience on my part, to make her comfortable enough to talk about her feelings—her fears and sadness, her pain and suffering. She would free herself of her burden of worries from time to time—and as a mother, she worried about her son.
Steve was a revelation. We’d been together over twenty-six years and he was finally able to open up to me. It was a matter of trust.
We became closer as together we discussed all the frightening and unpleasant aspects of his cancer. He finally felt safe and didn’t second guess every move I made.
I had a mother and son, who had their own issues, living under one roof, communicating with me on a level neither of them had been able to get to before.
I sense they knew they had nothing to lose and much to gain. Instead of sitting on their feelings and becoming more and more depressed, they felt free to express every concern promptly, getting rid of the negative feelings that wore them down—and wore me down. It was easier for me to listen to issues as they arose vs. issues which had grown to chimeras of monstrous proportions when they held these feelings in.
Opening this clear, non-judgmental channel for communicating also led to reconciliations.
They both knew their cancers would eventually kill them and wanted old grudges to be settled so they could to get to a peaceful place. They learned to forgive and apologize easily.
Now that they’re both gone and I look back on integrating the practice of using “loving speech” and “compassionate listening” into my life, I know it has served me well in all my relationships. I’m patient and gentle with people and they, in turn, feel comfortable with me because I am a “safe haven.” They also know I’m not a pushover. By having a sensitive and calm default state, when I’m upset and use a strong tone of voice, they know I mean business and I’m not just a ranting and raving female. I manage to stay mindful in business dealings and accept the fact that I can’t do everything alone. I did that as a caregiver and know I don’t need to do that any longer.
There are many things to be learned in practicing mindfulness that will serve you well in all phases of your life. It’s an increasingly popular way to “be” and happily, it’s free!
Adrienne Gruberg, President and Founder of The Caregiver Space
I guess my career as a caregiver began when my grandmother taught me how to make chicken soup, early in my teens.
I’d already shown myself to have a fearless bedside manner, spending days on end in the hospital when my dad was diagnosed as having lost half his blood from a bleeding ulcer. Hospitals didn’t bother me. I was never the least bit squeamish.
This served me well in my first marriage when I assisted my husband in lab work and later on, when he worked for the kidney transplant program at the New York Blood Center. There were weekends I’d have a kidney on a dialysis machine on my dining room table while we tracked down a recipient. This was long before sophisticated, computerized donor programs were able to search databanks—it was all done manually on paper and the telephone.
Growing up, I saw widowed grandmothers customarily move in with daughters or daughters-in-law, who would then be charged with their care for the rest of their lives. In my family, that duty fell to my mother who relied on me to be there whenever I was needed. There were no “senior residences” or “assisted living facilities” then. There were “HOMES,” and you were a very bad person if you put your parent in a home. Oh how things have changed.
Eventually the time came when it was my turn to take care of my parents.
It was a long-distance caregiving situation and I racked up a lot of miles flying back and forth to Ft. Lauderdale. My father was my mother’s caregiver (even though he was fighting cancer) and he conformed to the statistic that caregivers predecease their spouses. I was there for him too, but the real job was with my mom after he’d passed. She had COPD along with other age appropriate conditions, but she was a true narcissist and an impossible patient. I learned to run interference between her and the women the agency sent to care for her. No one was ever good enough; no one ever liked her. I became a peacekeeper. I visited more often than I really had to because her need to be the center of attention had her in and out of emergency rooms, which meant booking the next flight out of New York to be with her. Her habit was to get sick on holidays, so she didn’t have to spend them alone. Sadly, we had a tough relationship to begin with and there was no pleasing her.
My sister-in-law gave me some very sound advice. “Treat her like she’s a mental patient. Just agree with everything she says. She won’t be able to confront you then.” It worked. I detached with love, as they say, and using this “yessing” technique made it possible for me to deal with her. I highly recommend it. She died in 2004 on February 29—just to be contrary.
My husband Steve was diagnosed with stage 1A lung cancer in March of 2005, but before he could undergo any treatments for it, he needed to recover from what had originally sent him to the hospital. He had peritonitis. They performed surgery, sent him to the surgical ICU and induced a coma. He was out cold for six days. His doctor told me “He’s circling the drain. Go home and take some Ambien. You’ll need your sleep. If he makes it through the weekend we’re home free.” Steve was basically on life support, and I watched him heal day in and day out every single day. I had a need to be there, by his side.
During this hospitalization, I learned how important it was to develop good relationships with the nurses and PA’s.
They were always there for me and gave Steve exceptional care. They’d send me home long after regular visiting hours were over and knew that I’d call the nurse’s station for an update every night before I turned out the light.
Steve came home with a temporary colostomy, and the first surgery for his cancer would be performed after he had healed enough to reverse the colostomy. I knew how capable I was and every inch of me knew I would be the best caregiver he could ever want or have. I did all the dressing changes on every surgery he ever had. I designed charts for his medications. I researched surgeons and treatment alternatives. I made call after call for any information that might be helpful.
A year and a half later, in 2007, his mother, who was 89 at the time, came to live with us because she’d been diagnosed with lymphoma. I now had two cancer patients on my hands. After about a year of this, I was fried though you wouldn’t know it to look at me.
My outer appearance was a shell, and it meant that no one ever asked me how I was doing.
“You look none the worse for wear,” and that was it. But I knew it was time for me to find some support.
My life was centered around Steve and his mom, but I had a plan brewing in my head and heart, and I kept refining the dream and it kept me going. I would make sure there would be life for me after caregiving and that I would create something worthwhile for an underserved and underappreciated population.
Steve’s mom passed away in June of 2010, and less than a year later I lost Steve. After almost a year of grieving, it was time to proceed with my vision which became The Caregiver Space.
I imagined a site where caregivers were our sole concern.
Adrienne created The Caregiver Space after Steve passed away
Yes, they clearly had problems that concerned their loved ones, but I didn’t want that to be our focus. A resource library would be created to link caregivers to sites
that specialized in patient care. I was working on organizing my life after Steve with a young woman, Allie, who liked the site idea and she took it and ran with it. We built it beginning April 2012.
We launched the site in December—in just a few months, the site was a reality. We’ve been refining it ever since. It’s quite amazing.
My vision was quite detailed and we’re still adding new elements to it including videos on health and fitness, stress coping strategies, relaxation techniques, escape videos, book clubs and much more which would eventually become a fully functional Caregiver TV Network. We’re well on our way. It’s all very exciting.
But, my life has changed. I miss my husband terribly—today would have been our eighth anniversary. We lived together for a total of thirty-two years, but only six as man and wife. I like to imagine him sitting on my shoulder, pleased as punch that I’ve made this all happen—not alone—but it is a real manifestation of the love and devotion that went into my caregiving experience.
And to think, it all started with chicken soup!
“Be prepared…” I’m prepared for everything. “That’s the Boy Scout’s marching song…” according to Tom Lehrer. “Be prepared! As through Life you march along.” It fits because everyone counts on me to have everything—even the lyrics to the trickiest Steven Sondheim songs.
But if Bobbie had never said anything, I might never have given it a second thought.
Half the time, her insights were not insights at all. Yet when “Your handbag! It’s everything that’s wrong with you,” came out of her mouth she’d hit a nerve. Years ago, my boss gave me this oversized bag. A big beautiful burgundy leather duffel that I felt obliged to fill. I always had this feeling that I needed to be ready for anything—this chockablock bag was visible proof that I could take care of myself. Hell—it was almost proof that I could take care of a small country.
My whole life felt like it was “just in case.” I carried an assortment of pills—just in case. Just in case I had an allergic reaction. Just in case I felt a migraine coming on. Just in case I had an anxiety attack. Just in case someone else needed a Valium.
I carried a virtual first aid kit—assorted Band Aids, Neosporin ointment, eye drops, cortisone cream. Nasal sprays, menthol inhalers, oil of clove (for toothaches), a toothbrush, a comb and a brush, just to be sensible. My eyeglass requirements really weighed me down. One pair with clear prescription lenses just in case my contacts bothered me. One pair of prescription sunglasses in case my contacts bothered me while I was driving or happened to be allergic to something. Of course I also had a pair of non-prescription sunglasses for normal wear. My other paraphernalia included a pre-Filofax loose-leaf book that functioned as an agenda and address book. It was just way more comprehensive than it needed to be. It was replaced by my Filofax that was then replaced by my Wizard pocket agenda and then my Palm and finally my iPhone. But now I carry an iPad as well as my phone. There was always a hard-bound sketch-book and a hand-picked assortment of writing implements—my personal fetish. Way back when there were no cell phones, I carried a large Texas Instruments calculator that was larger than my iPhone is now. Of course there was the book of the moment; now I’ve got my Kindle with its virtual library. Steve Martin recently told a joke: “I just downloaded ten thousand books onto my Kindle, and now I can’t lift it.” For more reading material, there were always one or two magazines and the Sunday New York Times Magazine section which was good for a read or for the crossword puzzle.
I always had a key ring with keys to everything and at least half of them were “expired.” I’d long ago forgotten what they were for but was afraid to junk them—just in case. I was never without a twenty-five foot retractable measuring tape (an eight footer might not be long enough) and at least a twelve-inch metal ruler with a non-slip cork backing. For good measure, I carried an Exacto knife, just in case there was a mat that needed cutting.
My overstuffed bag, in order to be ready for anything, needed my comfort items: a mini rain-stick and a wooden “touchstone” were both small enough to include and there to calm my nerves. This breakdown of contents wouldn’t be complete without mention of loose change, subway tokens and crumpled bills of many denominations. I still find money in my pockets when I least expect it. And oh—a sensible collapsible umbrella.
I’m certain I’m leaving something out—oh yes, a checkbook; these were years when I didn’t charge anything. And I almost forgot a make-up case which, by itself, weighed five pounds. Suffice it to say I wanted to be as prepared for anything as a person could be in order to feel secure. This has worked both for and against me—I’ve been “Johnny On-the-Spot” with help for friends and strangers, but I’ve done irreparable damage to my back and shoulders.
Newfound self-confidence has allowed me to pare down the load a bit, but now I’m writing lists (of varying lengths) that can be found in the one notebook I now carry—and on a variety of digital devices. The iCloud has made it possible for me to create lists on one Apple product and have it saved on all of them. (I carry two.) I’ve been successful at editing down my bag; but now I feel like my head’s overstuffed with all the nonsense my trust issues force me to try and remember.
This aspect of my character, when paired with outstanding organizational skills, makes me a great hostess, event planner and superior caregiver (she said patting herself on her aching back). Although the handbag issue is somewhat under control, I still have issues with my “ready-ness” at home. My beach house is well stocked with suntan lotions of every SPF formula available and bug repellants of every kind. My pantries are stocked with a constantly growing stash of artificial sweeteners. There’s a new brand on the market every year. I did, interestingly enough, just discover I don’t have any real sugar (brown or white) in or out-of-town. I’ve also got to have honey for the tea drinkers and agave for the rare soul requiring it. I have herbal, caffeinated, decaffeinated, diet and high-test, still and bubbling beverages of every kind.
Everyone knows “Adrienne will have it,” whatever “it” is, and I usually do—if not on my person, at my destination. I brought all of these talents to caring for Steve and his mother. Constant, ever-changing lists and mental charts would actuate on my computer and be output by my printer. (Of course there’s a good supply of paper and ink cartridges on hand.) I was confident that it was a matter of “when” everything was needed and not “if” they were going to be needed. Prepare for “it.” Steve always depended on me to have every possibility covered.
When Steve’s mother, Sylvia, came to live with us she was eighty-nine and pretty spry. She had been diagnosed with lymphoma and had lost a great deal of weight, ergo she needed new clothes. I decided it was high time for a makeover and assigned myself to the task at hand. I wanted to get her out of her dirndl skirts and into trousers. She was a tiny woman, not quite five feet tall, but she had a big personality and winning smile. I became her personal shopper, and would go to the fashionable discount stores to find her pantsuits, or tops and bottoms. I bought her one pencil skirt and one lovely black wool crepe sheath. She was a different woman after she had new clothes. The makeover had a positive effect. She was no longer seeing herself as a sick woman. She loved the new Sylvia and felt healthy and strong; ready to take on lymphoma and win. I only relate this story because she was an unforeseen element in the scheme of my life, which now included a husband with lung cancer.
“Be prepared” had become my mantra. I found I was ready to tackle anything that blocked my path and there were many hazards to deal with along the way. Somehow, nothing threw me. I had become secure enough to know how to anticipate dealing with the new realities that came at me fast and furious. Doctors and hospital personnel knew I was part of the team; whether the patient was my husband or my mother-in-law. I earned their respect and that came back to me in their cooperation. I had become a force of nature. A natural-born caregiver.
My handbags are still full of “what if” items, and sadly it’s all about me now. I’m alone again, but the self-esteem I garnered year after year of being counted on, has left me feeling secure. I can leave the house with my keys, a few dollars and a credit card and not feel I need the “big bag” to be safe. I can conquer anything; widowhood, money management, creating this website and more—discovering a whole new me, day by day.
Adrienne Gruberg, founder and president, and Schatzie
Please forgive me for repeating myself, if and when I do, but it is clear that when you’re a hard-wired caregiver, like me, there are recurring behavior patterns in your life and although you know you don’t want to repeat the mistakes of the past, or live through painful experiences again, you are hard pressed to shy away from the challenge when it is presented.
Creating The Caregiver’s Survival Network is truly the realization of a dream for me; it’s also a far more emotionally challenging task than I ever would have dreamed, but for very different reasons than I might have thought. Certainly, the website in and of itself is an exercise in extended caregiving. I have a need to make life better and easier for others going through versions of what I went through as a caregiver for my husband and his mother. There is a devil sitting on my shoulder asking me “Why are you putting yourself through this? Why aren’t you just travelling the world and having a high old time? Why do you have this need to be needed? Don’t you deserve to enjoy yourself?” In fairness to the devil, I have asked myself the same questions and rest assured I am no saint.
What I am, is grateful for the gifts that I have been given, mental, physical and material, and I recognize my need to be of service, not the need to be needed. I am a childless nurturer. I never really wanted to be a parent. But I am a great mentor. I never perceived myself as someone looking to fix anyone else; rather, I am looking to teach by example when I am equipped to and guide people to reach their own potential, whether or not I have reached my own. I believe The Caregiver’s Survival Network will provide me with the wealth of experiences to finally accomplish all the things I am capable of achieving.
How many times have we all heard “Do what you love and the money will follow?” Following your heart doesn’t come easy. I would never tell anyone not to try to attain their dream, but there are so many obstacles in the way that many people can’t even see their way clear to having a clear picture of what that dream is. Until very recently, I was so busy with other people’s well being that I didn’t realize that “Hey! That’s what I want to be doing.” I thrive on making other people’s lives better. Easier. I just hadn’t envisioned being able to do it on this scale.
I don’t care who invented it, the internet is a marvel; and as long as I have young, bright, energetic people around me to show me how to best utilize the wonder at my fingertips, I will be doing all that I can think of to make other lives the better for my having been here. I’m not ashamed to say that I love doing good for others. If there’s money in that, it will go back into continuing the good it can do. That is my dream.
I don’t know about you, but I’m really tired of going to websites and reading that I have to “take care of myself” if I’m going to be able to take care of the patient. Now, this isn’t just on one or two sites, it’s everywhere. Don’t they realize that we already know that? Even when the plea to take care is accompanied by a long list of helpful hints on how you can do that, it seems that they’re reminding me because they know it’s close to impossible to do.
I’m coming from a place where it’s over a year since my husband Steve passed away, but I’m still in caregiver mode. I have his businesses to run and all of the estate work to handle. I have closets full of clothes that I’ve been emptying and donating, but closets full of “stuff” still remain. There’s the closet behind the bed that I lovingly call “the garage.” Of course it’s not a garage; I live in Manhattan where only a handful of people are lucky enough to have their own garages. I refer to it that way because it contains years and years of collected electronics (with or without their wires, which inhabit a space all their own, waiting to meet up with the device they belong to). It also holds toys and gag gifts and all the things Steve could never part with; each item has its own story. The rubber chicken; the Star Trek Barbie and Ken dolls; the shoeboxes full of old remote controls and twenty years worth of old cell phones. The garage is loaded with memories that go way back and I have a hard time dealing with them. In this instance, my self-care is just allowing myself not to deal with it until I’m ready.
That’s the way it is with a lot of things. I have so much practical reality to deal with that the really tough emotionally loaded stuff can wait. In my situation, I’m lucky enough to be able to let it sit for a while. I’m not moving and I don’t need the space––yet. We all have our own ways of taking care of ourselves and I’m allowing myself to take it easy, after years of giving care to my husband. I have to remember it’s all about me now. I know I’m still saying “we” and “us” and “our” but taking care of me is still so involved with taking care of “his” stuff that life still feels like it’s “us.” He’s gone, but he’s so very much here. Caregiving doesn’t just stop; it’s a part of who I am.
The most important thing I have to care for now is this website; there is nothing more important in my life. Yes, it is a result of a caregiving experience because I wouldn’t have been immersed in all of it without Steve’s cancer. During the last weeks of his life, I knew that this was my mission; thinking about it and what it can and will do is what keeps me going. I think anything I do that involves this site is self-care. I do know, however, that this keeps me in “caregiver mode;” only now I’m aiming to give care to caregivers. I can’t help myself; I’m a nurturer. Helping others makes me feel good. When it dawned on me that I should finally reach out and ask for help for myself, I was fortunate enough to discover The Wellness Community. Though it is now The Cancer Community, their method of sharing with other people is what gave birth to The Caregiver Survival Network – now known as The Caregiver Space.
Every Monday night for an hour-and-a-half, I would make myself unavailable to Steve – unless there was an emergency. There was no conversation; nothing to be overheard except the clicking of the keys of my keypad as I’d meet up with ten or so women week after week. That was my primary self-care. Keeping and posting a journal was self-care. Leaving notes for my fellow caregivers that brought them up-to-date on Steve’s condition was self-care. It was Steve’s condition that brought me there; but once I found an outlet for everything I was keeping bottled up inside me, everything I was feeling came pouring out; and I found great relief.
I also discovered Cancer Survivors Network, which is part of The American Cancer Society’s sharing initiative. Their discussion board was broken down by type of cancer and by patient and caregiver. There were also bereavement, gay, and memorial tribute sections. I read a post from a woman titled “My family has become invisible,” and I responded to it. I immediately related to this woman, though our situations were different, at least, on the surface. After a few posts back and forth, I wrote her an email on the site asking if she would be interested in having a pen pal. Happily she was, and we wrote each other almost every night. This connection was a commitment to someone other than Steve and exclusively for myself. It was one of the most important things I did to keep myself centered.
Sure I knew how to eat properly. Sure I would get up and walk around the block or get out of the house for “shopping therapy,” but there was never enough ME time for me to feel fully cared for
Because I couldn’t leave the apartment for face-to-face meetings that would take me away from Steve for hours, and I couldn’t deal with a phone session since he was a supreme eavesdropper, writing became my greatest source of relief. Sure I knew how to eat properly. Sure I would get up and walk around the block or get out of the house for “shopping therapy,” but there was never enough ME time for me to feel fully cared for. I know it sounds corny and all “new-agey” and such, but putting “it” out there, into the universe, for others to see literally feels good. Writing all I was feeling down, freed me up to talk to my friends about things other than Steve’s condition; I no longer had to “dump” all of what I was feeling on them. It gave me back a big piece of me.
So…I’m not saying not to eat properly or not to exercise or not to have a network of people to help you with your caregiving; what I am saying is write and share and write and share some more. Even if it’s only a sentence. Try and see how it feels just to write down: “I can’t take it anymore.” Get angry. Feel sad. Feel helpless and afraid. Let it go. There are others who share your feelings. You have found a place where YOU are all we care about. There is no reason for you to go through what you are experiencing alone. You can find other caregivers who have things in common with you. Use this place as a respite from your caregiving responsibilities or use it to help you cope. Our aim is to provide you with a convenient outlet to FEEL YOUR FEELINGS as well as being a resource for your other needs as caregiver. But our main focus is you.
There are lots of ways for you to share your story. You can keep it in a notebook. You can keep it in an app. You can connect with other caregivers on our forums or in the caregiver chatroom. You can share your story in a caregiver profile, send in a blog, or even become a regular contributor.