Whatever you want to call it, caregivers need it. It’s that thing about your personality where shit is exploding all around you and you just roll with it. Roll up your sleeves and get to it, every day, no matter what.
Inner strength is a decision.
There’s no trick to it. There’s no pill to take. You just decide that you’re going to do this, come hell or high water. And then you do it, no matter how hard it is.
We all take it one day at a time, one moment at a time. Fear, despair, anger — emotions are irrelevant when you’re busy. Acknowledge your emotions, see what’s behind them, and then move past them.
Know why you’re here.
Everything I do as a caregiver has a reason for it. I’m here because I choose to be. Are you doing this to show your love and devotion? Are you doing it because you’re living your values? Are you doing this because you love helping people? Know your reasons and remember them when things are tough.
It will always be hard.
Caregiving gets easier, but it’s never easy. The harder I push myself, the more I can do. I’m stronger than I can possibly imagine and I know that. We all have a source of strength — cultivate it.
I don’t care what other people are doing, I care about what matters to me. By surrounding myself with a community of people who put community first I save myself from the opportunity to feel jealous about other people’s lives. I’m committed to my life as a caregiver and I don’t want to waste time on a life I’m not living.
No matter how strong you are, we all have our breaking point. Respect it. You can’t go 110% all the time. It’s okay to give 50% if that’s what you need to do to keep moving forward. You can’t sprint forever.
Being on high alert all the time will kill you. Our bodies aren’t designed to be hyper vigilant at every moment, it wears us out. There are boring moments, even in the ER and the ICU. A lot of them. Cherish them. Allow yourself to be bored.
Our family at my brother’s high school graduation in 1998, 1 year and half before his life changed forever
This Saturday my older brother will graduate magna cum laude from Volunteer State Community College with his Associate’s degree in Computer Information Technology. While every degree is special, this one is particularly significant. Earning this degree was a hard-fought battle, requiring perseverance, inner strength, and tenacity.
18 years ago, my brother made a decision that put his entire life on hold. When our mother was diagnosed with degenerative disc disease, she underwent a spinal surgery intended to alleviate her pain. Instead, the surgery was performed incorrectly, leaving her permanently disabled and unable to work. Two weeks prior, my brother turned 19 years old, and he was entering his sophomore year at college. He had immersed himself in a full university experience: he was an honors student in mechanical engineering, he was active in rock climbing and racquetball, and he had many friends. All of that changed when our mother’s surgery went wrong. He dropped out of college to come home to provide care for our mother and me, his little sister 7 years younger. He became responsible for her physical care, cooking, cleaning, and he also got a job to pay all of our household bills. In addition, he began taking me to school. I also took part in providing care for our mother, yet my brother bore the remarkable brunt of our mother’s care needs without any outside support or assistance.
Caregiving caused an 18 year gap in time before my brother would march in cap & gown again
While my life as a caregiving youth certainly wasn’t easy, I will always recognize the role my brother played in shielding me from the more devastating effects of caregiving at an early age. Because of him, my life took a very different path. When I look at his experience as a young adult caregiver, I know what my life could have been. Yes, the stress of having a mother in chronic pain sometimes negatively impacted my time in school. But, I will never know what it’s like to have your educational dreams snatched away because of caregiving. Yes, I know what it’s like to be bullied and to not feel comfortable telling other people about your life as a caregiver. But, I will never know what it’s like to be completely socially isolated and experience the loss of every single friend you’ve ever known because your life suddenly became vastly different than your peers. Sure, I know what it’s like to push yourself through school with the goal of becoming financially successful, always mindful that one day your mother’s care will fall on your shoulders. But, I will never know what it’s like to be forced to unexpectedly work a full-time job to carry the weight of a mortgage and an entire family’s household bills at the bright young age of 19. Because of my brother, there are certain sacrifices that I have never experienced.
When I tell people our family story and they ask about our mother, I say that she no longer required intense physical care around 8 years ago, mainly because she stopped having surgeries and her care progressed to the management of her chronic pain.
“Oh!”, people often respond, somewhat dismissively, “So everything is fine.” Others even say, “Your brother isn’t a caregiver anymore.”
“Well,”, I say, always getting a bit flustered, never knowing how quite to explain our family’s situation. For people who have never experienced family caregiving, they don’t quite understand. They don’t know that in some ways, caregiving never really ends, even if direct physical care is needed irregularly. The severe financial impact never ends. The worry over our mother’s health never ends. The constant gaze towards the uptake of future caregiving responsibilities as our mother ages never ends. And for my brother, on the eve of his graduation from college, the impact of caregiving on his career never ends.
Caregiving is the reason why at age 36, despite being “on the right track” at age 19, he has finally earned his first postsecondary degree. Caregiving is the reason why at age 36, he is not yet finished in school; another 2 years of hard work is needed for him to earn a Bachelor’s degree. Caregiving is also the reason why even after those years of going back to school, he still isn’t sure how to answer the big question of “what do you want to be when you grow up?” because he lost those carefree years of exploration during young adulthood.
I always consider my experience in terms of what I didn’t have to give up because of caregiving, or conversely, what I still was able to experience despite caregiving. That’s all because of my brother. He is the reason why my life was not utterly broken as a caregiving youth, why I was able to pursue my dreams, and why I have hope for my future. He is the reason why my career has been devoted to helping other child and young adult caregivers finally gain much-needed recognition and support in the United States. I firmly believe that because of his conscious actions of selflessness and compassion, millions of other caregiving youths will one day also feel hopeful that having an ill or disabled family member no longer means that they must give up their educational and career goals. People often call my brother a “hero” for our family. Indeed he is. But, as someone who has intimately watched my brother care for us day in and day out for years, I know that he is more than our family’s hero. He has cultivated a legacy that will impact the lives of millions of other young caregivers, and his graduation, is only the beginning of his accomplishments.
Ferrell Lewis, today at his college graduation. He graduated magna cum laude in Computer Information Technology.
We all recognize that caregiving is a complex task. It can bring a new closeness with the person you are caring for. It can inevitably bring a flood of emotions including compassion, nostalgia, gratitude, devotion, frustration, grief, sadness, love, guilt, and anger.
Anger is an emotion that is particularly challenging for caregivers. It is normal that at some point in the caregiver relationship it will appear. Often times when your role is not acknowledged or the person you are caring for is agitated or aggressive the stress of this role feels overwhelming. You are also simultaneously coping with the grief of losing the person you knew which is an additional component. The reality is unexpected behaviors or medical problems can happen. In your role as a caregiver you cannot always stop or control these situations making you feel helpless and isolated.
The first thing to recognize is anger is a normal reaction. Caregiver fatigue evolves from daily physical and emotional exhaustion. You may become emotionally raw. Do not chastise yourself of feel guilty when you have moments of high frustration or anger. You are human and nobody can always balance all aspects of their life, family other relationships, work, other life commitments in a seamless way. There are things you can do and need to know as you find yourself experiencing these feelings:
Recognize that you are making a difference even when it doesn’t feel that way
Think about what care options would be available if you were not there and how significant your role is.
Be kind to Yourself
Forgive yourself for moments when you become frustrated and angry. Focus more on the countless times when you were patient and compassionate. Allow yourself to have moments of imperfection.
Allow Yourself Respite
Be aware of your own body and feelings. Don’t wait till you crash physically or emotionally from your caregiver responsibilities. Be proactive on your own behalf and get additional support from a relative, friend, of healthcare professional, or respite care program. Give yourself time to recharge. It will benefit you and the person you are taking care of.
Take a Moment to Consider Why You are Angry
When someone is yelling at you or being physically aggressive it is hard not to get angry. Carefully consider why the person you are caring for is doing things to make you angry. Maybe their behavior has nothing to do with you. Perhaps their medical condition creates poor impulse control or memory and they can’t help but ask you the same thing over and over again. Maybe they don’t recognize you and are afraid you are a stranger and they are reacting out of fear or confusion. Maybe they are having a reaction to a medication. Sometimes understanding the reasons for their behavior can soften your reaction. Your feelings about caregiving will change moment to moment.
Incorporate Some Fun Into Your Role as a Caregiver
Think about something you would like to do that could bring some relief from conflicts. For example turn on some music and dance. Music can have a soothing affect on all concerned. Pick a favorite movie and watch it together. Take out old photos and reminisce. That can be meaningful for both of you.
If trying to get dressed becomes a battle just stop. Focus on something else and come back to it later. Give the person you are caring for limited choices when appropriate. For example, would you like to wear your blue or red shirt. Have them both out so the person you are caring for can choose. This way you both feel like you have some control which helps reduce frustration and anger.
Identify Healthy Ways to Release Your Anger
Maybe you will feel better after you kick a ball or punch a pillow. Maybe going in another room and saying what you would like to say letting it out will help. This release will help calm you down so you can move forward with it taking less of a toll. Physical exercise releases tension and can lift mood. Can you take a walk, do jumping jacks, yoga, or meditation? Think about what feels right for you. Writing can be a great release. Write your feelings down or what you would like to say. Transfer your feelings into a poem. You don’t have to share it with anyone. It is another form of healthy release.
Don’t spend time Getting Upset about Things You Cannot Control
This takes extra time and energy you don’t have. Remember you cannot necessarily control the actionsof the person you are caring for. You may have a big fight yesterday. The person you care for has no memory of it today. Try to leave your anger behind. Focus on what you can control which is your reaction and attitude. Start fresh today.
Recognize You Cannot Change Past Relationships
You may be caring for a person whom you had a past conflict ridden relationship. This impacts your role as a caregiver. You need to closely examine its impact on you. Maybe you are not the best person to assume this role.
The biggest mistake caregivers make is not taking time taking care of themselves. You need to identify a person you can candidly talk to about the challenges of your caregiving experience. Another great source of support are caregiver groups or on line caregiver chat sites where you know others understand and have empathy for what you are experiencing. Finally, a healthcare professional with expertise in this area can offer counseling to help.
This has been a stressful month. My disabled husband developed a horrendous rash, which he described as being attacked by ants. I had three infections and injured my back while lifting him. A manuscript I’d been working on disappeared from my computer, and back-up systems failed. I asked an office store to scan the manuscript to a file I could edit, but the file was such a mess, I gave up. The only thing I could do was retype the manuscript.
No wonder I developed a case of the blues. This wasn’t like me, and I was used to caregiving. In fact, I’ve been in the caregiving trenches for 20 years, nine years as my mother’s family caregiver, seven years as my twin grandchildren’s guardian and caregiver, and close to four years as my disabled husband’s caregiver, with more years to come.
I don’t know what is hardest about caregiving for you, but isolation and loss of identity are hardest for me. Although I counter isolation with emails, giving talks, and volunteering, they aren’t the same as personal contact. Besides, I have little time for these things. While I’m caring for my husband, I’m maintaining a writing career, and marketing my books. What’s my problem? Keeping my identity as a writer is a biggie.
A disabled person requires extra care. Even with two hours of paid care a day, I’m always behind. “I’m not trying to push you,” my sweet husband declares. His comment doesn’t make my task list any shorter, or give me an energy boost, or make me feel better. The “To Do” list is often a “Not Done” list.
The Caregiving, Mothering Mother and More blog discusses the identity problem in a post, “I Don’t Know Who I Am Any More: Losing and Finding Your Caregiver Identity.” The author is a mother, school director, writer, and family caregiver, a new role. This role included driver, health advocate, cook, and dedicated companion—a combination that made her feel like a dog “with a choke collar on a very short chain.”
Jack M. Rosenkranz, J.D. writes about identity in his article, “Caregiver Identity Theory,” published in the “Jewish Press of Tampa.” Caregiver identity theory originally came from Dr. Rhonda Montgomery and Dr. Jung Kwak, he notes. The idea behind the theory is that caregivers’ needs are multi-dimensional. “Caregivers themselves often require individualized plans to maintain their own health and quality of life,” he concludes.
Well, my plan is to keep writing books and articles. But publishing has changed. All publishers—traditional, independent, and hybrid–expect authors to market their work. This is a huge job by itself. Add that to caregiving and there are times when I feel like I’m drowning. However, when I see my books on the Internet, and hold them in my hands, stress and work hours are forgotten.
While wife, grandmother, and family caregiver are part of my identity, at this time of life, writing is most important. I’ve made some changes in my writing schedule, including getting up earlier, posting daily on the Internet, and taking online marketing courses. Writing is my self-care and salvation. What’s yours? We can’t let caregiving rob us of our identities. Keeping our identities makes us better caregivers!
In the face of overwhelming odds, we put ourselves in an often impossible situation, and keep doing it armed with little else than love—while spending blood, sweat, and treasure. I wouldn’t hang around somebody who treats me the way I treat myself, and I’ll bet you wouldn’t either. We treat ourselves mercilessly—thinking somehow because of guilt or whatever, we’ve got to push ourselves to the breaking point.
We’ve all heard the story of military drill instructors who look at a line of soldiers and ask for a volunteer. Then, everyone steps back—except the one guy who wasn’t in on the planned exit. He didn’t step back.
As caregivers, WE didn’t step back. We show up every day. Sometimes we do it well—other times, we make mistakes. Either way, our attendance record is perfect even if our service record isn’t. Regardless of what we do or don’t do, we still beat ourselves up because we didn’t do it as well as we think we should—or somebody else thinks we should.
There is a word for caregivers to remember: Grace. To me, Grace is the most beautiful word in the English language. I married a woman named Grace. I love saying her name. As caregivers, we rarely give ourselves grace—to our detriment. Healthy caregivers make better caregivers, and we cannot exist in a healthy state when carrying the crushing burden of guilt.
This kind of caregiver guilt isn’t about sins that get great press. Those things earn guilt. Rather, this type of guilt comes when a child is born with a disease or disability—or even something as simple as wanting to take a break for a day …or even a few hours. The list of things we punish ourselves for stretches beyond the horizon, but none of those things help us live a healthier life. We’re no good to anyone if we stroke out or become impaired ourselves by pushing ourselves to the breaking point.
Today is a good day to be a healthy caregiver, and that journey starts with extending grace to ourselves.
Humor May Be Antidote For Pain Of Death For Patients, Survivors
Just weeks before Christmas some years ago, Shirley Rapp and her family faced the devastating news that she had what appeared to be a terminal illness.
But that didn’t stop Rapp from wanting to do one last round of Christmas shopping for her kids. Her daughter, Karyn Buxman, a self-described neurohumorist and RN, went along. When the mother-daughter duo stepped into a St. Louis-area stationery store, Rapp picked up a day planner that she admired, turned to her daughter and quipped: “If I make it past Jan. 1, will you buy this one for me?”
That’s when Mom and daughter burst into laughter that attracted every eye in the store.
For some folks, the process of dying comes with less stress when it’s something of a laughing matter. Not a yuk-yuk laughing matter. But, at its simplest, a willingness to occasionally make light of the peculiarities — if not absurdities — that often go hand-in-hand with end-of-life situations.
An aging generation of boomers, the oldest of whom are now 70, grew up to the background sounds of TV laugh tracks and are accustomed to laughing at things that might not always seem so funny. There’s even a non-profit organization funded by donors, conference revenue and membership dues, whose mission is simply reminding people that laughter is a core ingredient of all facets of life — even end of life.
Humor is particularly important when folks near end-of-life situations, says Morrison. Turning 70 hasn’t stopped her from engaging in activities specifically to make her laugh — like hopping on her pogo stick. “While death cannot be cured, your frame of mind is something that you can change.”
Her group has some loose guidelines for the use of humor among the dying. Most critically: Make certain that you know the ailing person very well before using humor with them.
On its website, the National Cancer Institute urges patients to build humor into their day-to-day lives, in ways as small as buying a funny desk calendar and watching comic films and TV shows.
Buxman, who earned a lifetime achievement award from the AATH, gives speeches on the importance of life’s comic moments. A former hospice nurse, she takes humor very seriously. She has studied the impact humor has on the brain and on the stress levels of patients in their final days. The right humor at the right time, she says, can infuse the brain with pleasurable hits of the stimulant Dopamine, decrease muscle tension and anxiety in the body’s nervous system, and momentarily diminish feelings of anger or sadness.
As it turns out, her mom survived her initial illness — only to later develop a fatal form of Alzheimer’s. Near the end, Buxman took her mom to the doctor’s office — at a time her mom had stopped responding to most external stimuli. While sitting in the waiting room, Buxman could hardly believe it when her mom uttered, “Make me laugh.”
Buxman knew this was the time to share a funny, family memory. She recounted to her mom the story about the time the two of them visited the kitchen section at a large department store and saw a display of frying pans cooking what appeared to be artificial eggs. “This food looks so real,” her Mom said, poking her finger into the fake food. But the egg was real, and when the yolk popped, it oozed all over Rapp and the display.
“As I recounted this story, Mom’s face moved and her eye’s sparkled — and the two of us just doubled-over with laughter,” says Buxman. “Even near death, we can still communicate to the most primitive part of the brain — with laughter.”
But family-related humor isn’t only acceptable in terminal situations — it’s often helpful.
Just ask Paula McCann, an elder attorney from Rutland, Vt., who writes the blog onthewaytodying.com. She recalls when her then 83-year-old father, John, who was diagnosed with Alzheimer’s, requested to die at home. His children and wife took turns caring for him. One evening, McCann sat with her mother at her father’s side, shortly after he had been administered his last rites. Mother and daughter started to discuss where his soul was at that moment. McCann suggested to her Mom that perhaps it was in a holding pattern, while God reviewed the right and wrong he’d done, before allowing him into heaven. That’s when her mother quipped, “He’ll be there forever.”
A sense of humor about all of the drugs patients deal with at life’s end, helped Ronald Berk, former assistant dean at John Hopkins University, through a rough patch. His wife, Marion Smith-Waison, a former OBGYN doctor, was very ill before her death 18 months ago. She had scheduled a meeting at their home with folks offering holistic medicines. When Berk entered the room, a drug counselor asked him, “Are you taking any medications?” Berk shot back, “Yes, I was taking crack — but I gave it up for lent.”
Berk insists humor at that stressful moment offered a critical “release valve.”
Chip Lutz, a professional speaker who retired from the Navy years ago, recalls the importance of shared humor before his father, Eugene, died last year. Trying to squeeze an extra hug out of visiting family members, Eugene often cajoled them with, “Well, this might be the last time you see me.”
But Eugene’s son, Chip, had the perfect response. “You can’t die yet — I don’t have your eulogy done,” he shot back.
Few people hear more morbid jokes than hospice workers. Several years ago, Allen Klein, an author and motivational speaker, volunteered at a hospice in the San Francisco Bay area. An elderly woman he was assisting told him that after she died, she wanted her husband’s bedroom repainted — with her cremated ashes mixed into the paint.
“Why would you want that?” inquired a confused Klein.
“So I can look down at my husband and see if there’s any hanky-panky going on.”
Unfortunately for many of us, the pain of losing somebody we love, or people we have had a mixed relationship with, can be made worse by the presence of regrets. Mourners can be left struggling with thoughts like, “What could I have done differently?” “I wish I had gone to visit him or her more often.” “We were not very close, and now we never will be”.
When grief situations are touched with regret, each mourner must search for a way to find peace within themselves. Obviously events, words and actions that occurred in the past, can not be changed. There are two main options available when dealing with regret, either suffer indefinitely, or find a way to forgive oneself and perhaps make changes about how to behave in the future.
People whom have spoken too often in anger may resolve to become more diplomatic and patient in their communication. Those suffering because a person they cared about died without knowing how much they were loved or respected can choose to become more expressive. If saying intimate things is unfamiliar to you, perhaps writing a letter or even a song or poem may be easier.
If you wish you had visited more often when a loved one was alive, look around at friends and family members still living and reach out more regularly. When physical distance is an issue using emails, phone calls, Facebook or sending cards can still be very satisfying.
Some mourners are able to forgive themselves for past disappointments more easily by writing a letter to the deceased and saying how they feel now. Others can make a financial contribution or volunteer time to an organization that their loved one would have supported.
If you are struggling with regret, it is vital to understand that you can only change your current self and future behavior.
Ready to avoid future regrets in the future? Try this healing technique called: Choose 5 Memories
People who tend to be aggressive or unappreciative with loved ones could benefit from this healing technique designed to reduce accumulated tension: Transition 10
Many of us are so stressed out or overwhelmed by our daily responsibilities that our behavior becomes less skillful. This article about ‘Avoiding Caregiver Burnout‘ may help.
One of the hardest circumstances for grievers to recover from can be losses due to suicide. If you or someone you know has been effected by suicide, please forward them this information about a great organization called: The American Foundation for Suicide Prevention
As always, please share any comment, suggestions or advice with our other readers in the comments section below.
Best wishes to you,
As family caregivers, it can feel as though there are more losses than gains in our lives. Our loved one loses their health and independence, and we can lose our time, identity, patience, and even careers. Change and loss become dependable constants in our caregiving life.
One of the most common complaints of change amongst caregivers is the feeling of isolation. With time as our most valued commodity and stress as our new and uninvited best friend, making room for the support we need is very often one of the first things we let fall by the wayside. We are simply too busy, and if we aren’t too busy, we are simply too tired to engage in the things that once made us excited.
Adding to that can be our friends who sometimes call less frequently, or make assumptions that we are probably too busy to attend the party and so the invite never gets sent, or we just can’t muster the energy to go to book club because it’d mean having to do one more thing that day. And sometimes it’s us who pull away from the friend that continues to perkily say of our terminally ill partner or parent, “They’re going to get better, I just know they will!” because that kind of fantasy doesn’t help us at all.
All of this is reason enough to say, “Good riddance!” to people for a while. Why bother with making plans you may have to cancel, attend parties that you could need to leave mid-champagne toast, or worse yet, need to get off the couch and fix your hair to attend? I give you full permission to say, “See ya!” to all that. But in saying goodbye I am going to ask you to say hello. Say, “Hello” to someone new, someone like you, someone who is also a caregiver. Why?
Sharing your experience with someone else that speaks your language with no need for translation is a powerful way to be supported by someone who understands where you are coming from. If there is only one thing that you do for yourself this month, I urge you to make finding a new friend in caregiving be that thing.
Where might you find your new BFF? How about daring yourself to attend a local caregiver support group meeting? Or, there may be people who are members of caregiving websites you visit (like this one!) that you could send an email to and introduce yourself. Or you could do what I did in one of the most uncharacteristic moves of my introverted life…
When my dad was living in the memory care unit of an assisted living, I knew no one who had a parent in the same environment. I felt like an explorer without a map. The pain of watching his decline was on certain days unbearable. Visiting with him daily, I began to notice one or two other daughters passing me in the halls with frequency yet we never gave more than polite nods of hello to one another. Until the one day my caregiving experience changed forever and for the better.
Dad was one of two men living in the unit. The other man’s daughter was one of the women I saw just about every time I was visiting my father. She and I had done a lot of hello nodding to each other.
One fall afternoon as I was leaving for the day, this daughter was walking out the door about 40-steps ahead of me. Giving no thought to what I was about to do, I sprinted up ahead to catch her. Winded and catching my breath (because caregiver’s true confession: I wasn’t exercising regularly) I introduced myself and quickly realized that I was talking to one of the sweetest people I would ever meet. She blurted out her latest issues; I nodded and responded with lots of, “Yes! Me too” statements and before we left the parking lot, we had exchanged emails and scheduled a lunch with another daughter whose mom was also living in the unit.
That lunch with two strangers had happened one year before my dad died. To this day, five years later, the three of us, now former family caregivers, are still friends. What is unique is that we each were born in different decades, yet the experience of caregiving let us transcend our ages. We spent hours sneaking out to the diner for lunch after visiting our parents to share our stories and latest caregiving conundrums with each other. We looked in on one another’s parents and reported back with anything worthy of concern. We would fill our email inboxes with funny stories and updates. We took proactive trips to visit the nursing homes that we would eventually need to admit our parents into after inevitable declines in their health. We combined our families and shared a Christmas celebration in the unit the year our parents were not well enough to travel. We were there at the funerals with lots of chocolate, flowers and emotional support. And, we were there and are still here to offer listening ears to the unique feelings that appear post-caregiving.
When I think of my caregiving friends, I’ve never felt to be truer the expression, “I don’t know what I would have done without you.”
Caregiving and the people you will meet change your life in the most new and unexpected ways. Why not go out and meet one of these people today? All you need is the word, “Hello!”
When I first moved to Florida many years ago, the expression “Cone of Uncertainty” caught my attention. During hurricane season, it refers to the cone-shaped path that a storm might potentially follow at any given time. In other words, the weather forecasters can’t really pinpoint when or where it might land.
Turns out, that’s also a way to describe how we grieve.
Those familiar with Elizabeth Kubler-Ross know that she divides the process of grief into five stages – denial, anger, bargaining, depression and finally acceptance. To that neat package, I say, “If only it were so simple.” Imagine being able to identify that you’re angry with only two more stages to go, or feeling depressed, but relieved that acceptance is just around the corner. Unfortunately, it’s not that linear. Grief will pinch your heart months or years later walking into the hardware store and smelling pipe tobacco, or driving in the car listening to the radio and hearing a parent’s favorite tune. It is not always loud or obvious, and surprisingly not a constant.
Sometimes deep sadness is coupled with a mix of other emotions. If a parent was suffering you feel at peace knowing their pain is gone. You may be relieved that the stress and challenges of caregiving are at an end, yet at the same time feel unmoored because the concentration and energy you devoted to this job are no longer required. For caregivers in particular, grief can sometimes seem insurmountable for this very reason.
In times of great loss, regret can often keep us stuck. The death of a parent is the death of hope. You may have longed for a different relationship with them. One in which you said or heard, “I love you,” or “thank you,” more often. Our parents also tend to be the keepers of family history and with their deaths we lose our connection to the past.
Guilt is another difficult emotion to overcome. You wonder if you did enough or should have done things differently. Harsh words were spoken and apologies are too late. Now is the time to remember you’re only human. Being the perfect child is just as unrealistic as being the perfect caregiver. Stop judging yourself. Instead create something positive out the negative. Maybe your father liked his cats more than his kids. Make a donation to The Humane Society to honor his memory. Maybe you wished your mother had spent more time with you as a child. Look into becoming a Big Brother or Big Sister or volunteer as a reader to kids at the local elementary school. I’m not suggesting you leap into anything immediately, but there are ways of softening the guilt and regret that attach themselves to the death of a parent.
Keep in mind that the experience of losing a mother or father will be different for every sibling. It depends on your relationship with that parent; what words remained unspoken; and how you viewed your contribution to their well-being, not just at the end, but throughout their lives.
Anniversaries of a death or certain holidays can be tough. A year after my Dad died, I raised a glass of wine, played Puccini’s Madame Butterfly (our favorite opera) and said, “Daddeo, wherever you are, I hope it’s interesting.” He was fond of telling me that heaven seemed like a very boring place. On Mother’s Day, I do all the things my mother loved to do – thrift shopping, listening to Barbara Streisand CD’s in the car, eating lunch at Too Jay’s, then I come home and tell her ashes all about it.
If you don’t want to be alone, plan ahead to get together with people who will be emotionally available for you. Just like everyone grieves differently, your friends, family and co-workers will support you in different ways. Not everyone can be a good listener when you need to talk through the grief. Some people are better with concrete tasks like bringing over dinner or taking care of a chore you’ve been putting off.
Midway through the experience of attending to both my parents, what concerned me was something that often occurs with caregivers. Our identities merge with the task of caring both physically and emotionally for an aging parent and at some point the question arises – “Who will we be when the caregiving ends?” You might discover this type of service is something you’re really good at and you want to do more. For someone else, the idea of being responsible for another living creature, even if it’s just a pet, is way too much. The point is to be gentle with yourself, no matter what you feel.
Keep in mind, there’s no set timetable for grieving and no right way to do it. Give yourself permission to experience moments of joy amidst the mourning. It does occur. Don’t try to be all things to all people. If that means a moratorium on helping others deal with the loss, so be it. If you need help, ask for it – from clergy, from friends, a support group or a grief counselor.
Grief, which is so often muddied with guilt, regret and anger, can be exhausting. Doing what we can to make things right with our parents before it’s too late, opens us to the possibility of experiencing what Mary Pipher, psychologist and author, refers to as “good, clean sorrow.” It’s certainly something to hope for.
Take care of yourself. We’ve all heard this advice. A short walk may be one way you care of yourself. You may bake a batch of cookies. Going to bed a half hour earlier may also be self-care. Or if you’re like me, you may sit down and read for pleasure. But knowing you need self-care and practicing it are two different things.
I know self-care is important, but it became more important after I fractured a bone in my right foot. I wish I could say I hurt my foot water skiing, or hiking in the mountains, or playing tennis. None of these are true. My excuse is boring: I hit my foot on a chair leg. “Well that hurt,” I muttered to myself.
Five days later my foot started to swell. It turned red and my toes looked like fat sausages. The swelling moved to my ankle and then half-way up my leg. My right foot continued to swell until it was twice the size of the left. Since my primary care physician was out of town, I saw a Nurse Practitioner, and she was excellent. She ordered an x-ray and, as often happens with a stress fracture, the x-ray didn’t show up. The Nurse Practitioner suggested another test.
“If the test shows a fracture, you will tell me to wear a boot for six weeks, right?” I asked.
“Yes,” she answered. The test is expensive and, to save time and money, I decided not to have it. Besides, I already had a protective boot in my closet, leftover from a fractured ankle I had last winter. The nurse practitioner told me to take over-the-counter pain medication, and stay off my feet as much as possible.
“Good advice, but I’m my disabled husband’s caregiver,” I replied. She nodded her head in understanding.
Hobbling around in a boot is tiring, and out of necessity, I added new self-care steps to my list. I plan driving routes more carefully. I elevate my feet in the morning and again in the afternoon. I wash dishes at lunch time, and stash the evening dishes and pans in the dishwasher, a surprisingly helpful step. I asked the church Caring Committee for ready-to-eat meals, and a member of the congregation delivered enough food for three dinners.
“You have to stop breaking bones,” my sister-in-law declared in an email. She was right. So I took the most important step and made an appointment with my primary care physician to discuss osteoporosis therapy. According to the Nurse Practitioner, new medications have been developed that slow the progression of osteoporosis. I hope my doctor will prescribe medicine that helps me.
Did you injure yourself? Did you catch a bad cold? Were you diagnosed with a chronic disease? If so, it may be time to add new self-care steps to your day. To care for your loved one, you must care for yourself. Small self-care steps can have a big impact on your energy and health.
For most of us, being a caregiver is more like running a marathon than a sprint, and few things can dehydrate you faster than the relentless demands that come with this role. I’m not just talking physically, but emotionally and spiritually, as well. Those oft-ignored symptoms of headaches, fatigue, dizziness, confusion or anger can all be signs that our bodies and minds are depleted and out of whack.
So, even though we may not be able to mute the cell phone, hand our duties over to someone else, or get away for a two-week vacation, there are small ways to replenish that don’t take a large investment of time, or even money.
One caregiving friend I know takes walks with her beloved dog a few times a day. Hard to say who enjoys those breaks more. Animals are always in the moment, and they can teach us to do the same. Own a feline, instead? I can’t be the only person who’s gone into a trance while stroking my cat’s pointy little face. Research shows that petting a beloved fur baby can release a spray of endorphins that make you feel more calm and peaceful.
The benefits of music have been scientifically documented. It can reduce stress, relieve pain, and help insomnia. When traveling back and forth between Tampa and Orlando to visit my folks, I found that singing along with Barbra Streisand tunes always calmed me down. Would that I had Bab’s voice instead of her nose.
Art saves. Whether it’s a coloring book for grown-ups or a half hour of scrapbooking or knitting, focusing on a creative act gives your right brain a needed boost. It’s also the perfect escape from the barrage of information and decisions that a caregiver’s left brain must deal with every day.
Pay attention to the natural world around you. Listen to the birds chirping away. Notice the plants that are throwing out shoots or flowers. Admire the tenacity of the sugar ants still marching across the kitchen counter, despite all your extermination efforts. Oops! Meant to delete that.
Practice gratitude. Meister Eckhart said, “If the only prayer you ever say is “Thank you.” that will be enough.” When caregiving, my gratitude stemmed most often from things like a good cup of coffee, 10 minutes of quiet, and freshly laundered bed sheets. Oh, yeah, and a sense of humor that allowed me to laugh when life was at its most absurd.
Make a lunch or coffee date with a friend. Someplace close so you don’t feel stressed about stepping away from your caregiving load. One thing I realized is that each friend offered a different kind of support. Some were listeners, some were doers, and others were just great huggers.
Dig in the dirt. It’s ironic coming from me, the person who can kill a plastic plant. Seriously, though, even if you’re not a gardener, there‘s something satisfying about squishing your fingers in rich loamy soil, and repotting a droopy plant or growing a few herbs outside your kitchen door. My choice is always cactus, since they thrive on benign neglect.
Chop wood. Carry water. My interpretation of this Zen expression is that familiar tasks can actually be a comfort in the midst of all the “life changes on a dime” moments that caregiving can bring. The simple act of making mom’s meatloaf recipe for dinner, or helping your child with a homework lesson can ground you in the every day sacred. And yes, it goes without saying that some tasks are more sacred than others…
And finally, it’s ok to have a good cry. Studies show that crying can cleanse our minds as well as our bodies; releasing bottled up stress hormones that can cause all sorts of negative effects. Unfortunately, I didn’t do enough of that during the years spent caring for my parents. Instead, I drowned my sorrows in cheese and crackers. Trust me, crying is definitely better for your health and your waistline.
As caregivers, going the distance requires staying hydrated in all its forms. It keeps us from hitting the wall or at least from hitting it quite so hard. The rewards of being there for someone you love can be great, but let’s be honest – sometimes “surviving” is the real prize.
“For, indeed, in the social jungle of human existence there is no feeling of being alive without a sense of identity.”
As Erik Erikson has so rightly typified, knowing “who you are” and “what you are about” helps us make sense of our personhood. Identity helps us carve out a niche in society by defining how we think about ourselves and how we relate to others. The exploration of identity does not occur in a vacuum, and the influence of external factors and persons play an important role in our identity development. This is particularly salient for those young people who provide unpaid care, assistance, and support for their family members with health care needs.
In the blink of an eye, my older brother and I became two of the nearly seven million child and young adult caregivers in the United States. When I was eleven years old, my mother acquired a physical disability as a result of a spinal surgery gone horribly wrong. Only the year before, my mother had run a full marathon in Alaska, her body completely capable of pushing itself to the limit. After the surgery, she became a shadow of her former self. She was unable to bathe without assistance and could not lift her arms to feed herself without tremors of pain racking her entire body.
My brother, nineteen years old at the time, dropped out of college to begin caring for my mother and me. From that point forward, he made every decision carefully considering the possible ramifications for our family. Attending his college two hours away? No longer possible; he needed to be home to help our mother to the bathroom. Going out with his friends on the weekends? Not a chance; that money needed to be used to pay our mortgage. My brother lost the friendship of his peers, the earning potential dependent upon a college degree, and all of his free time. Caregiving wasn’t simply a part of his life; it defined him. Those precious young adulthood years most spend finding their identities were stolen from him. He’d say that he was uncertain of his identity, outside of being “caregiver”.
My life, too, changed forever. The constant worry over my mother’s health and our finances coupled with the tormenting fear of “what-if?” plagued my thoughts. I’d pray every night for God to take away my mother’s pain and give it to me instead. Every morning, I’d wake up, and when I found that I could freely move my limbs around, I’d realize my prayer went unanswered.
Besides the non-stop anxiety, our family’s experience left its mark on me in other ways. I knew what it was like to hide from your family that you were bullied on the first day of seventh grade (and every day thereafter) because you knew there was enough going on at home and didn’t want to add any more stress. I chose to keep quiet because my mother would fight for me. The last thing we needed was my mother hauling herself up to my school in a neck brace, threatening to sue anyone who laid a hand on her child. I learned to hide my emotions and say everything was fine and good, even if it wasn’t. I fault no one for this. My feelings are my own, and I take ownership for whatever I’ve chosen to share or not share over the years. I learned to tell people that I’m a private person and much better at listening to others’ problems than divulging my own.
I remember when I did decide to share what was going on in my life. During my junior year of college; a trusted friend had remarked, “Feylyn, you don’t seem like yourself lately.” I watched her eyes widen in shock as I told her that my family was about to lose our home and that my mother was currently lying in a hospital bed— no more than two football fields away from where we stood — with excruciating pain from back spasms. My sweet friend was overwhelmed, and so was I. She didn’t know what to say, and I didn’t either. I decided then that I wouldn’t say anything to my peers anymore. I’d choose more wisely next time. What kind of person did that make me? Quiet, introspective, and a good listener, certainly. Always available to hear the problems of others and respond empathetically. I enjoyed it and was good at it. I soon found that I could put those good qualities to use in my chosen career as a therapist.
My life experiences reinforced my listening skills, cultivated empathy, and put me on a career path that would allow me to use both on a daily basis. The reasons why I became a therapist are many, but I’d be lying to myself if I thought that caregiving played a trivial role. Indeed, my experience in navigating my identity in the midst of young adulthood may not come as a surprise. Research on identity development has shown that the question of identity for young adults may be answered through their navigation of education, career choices, and romantic partnerships. Furthermore, previous research in the United Kingdom has shown that the experience of providing care for a family member may be a determining factor in the education and career choices for some young adult caregivers. My ongoing qualitative research with young adult caregivers in the US has shown complementary initial findings; the young adult caregivers overwhelmingly report that their educational and career path are significantly influenced by their caregiving roles. Their family experiences may lead them to choose jobs and careers in which they can utilize the skills gained from caregiving, e.g., money management, organization, and a caring spirit. They may also choose careers that put them as far away from caregiving as possible; they may seek lives away from the caregiving duties that they have had forced upon them. Still, others may choose hobbies, seek volunteer activities, and form fashion and music preferences influenced by their caregiving experiences.
In addition to educational and career choices, my research seeks to understand the deeper, internal impacts upon identity development for young adult caregivers. The influence of caregiving upon a young adult’s identity is not inherently problematic. It does, however, beg consideration. I assert that it’s important to consider how young adult caregivers have navigated major life choices and the question of who they are. Were they the authors of their own lives? Did they feel free to pursue their dreams? Do they feel like they missed out on something, and did some options feel unavailable to them? What and who helped shape them into the persons they are today? By exploring these questions, we are left with a better understanding of the role caregiving plays in young adult lives in both adolescence and adulthood.
Feylyn Lewis is a PhD student in Social Work at the Institute of Applied Social Studies at the University of Birmingham in England. A native of Hendersonville, Tennessee and graduate of Vanderbilt University, she is a nationally certified mental health counselor. Her doctoral research focuses on the identity development of young adult caregivers living in the United Kingdom and United States. During Feylyn’s childhood, her older brother was a caregiver for her and their mother who has a physical disability. This experience motivated Feylyn to pursue research and advocacy work for young adult caregivers; thus, she came to England from the United States in 2013 to further study under the expertise of Professor Saul Becker, world-renowned researcher on young people with caring responsibilities. Feylyn’s research with young adult caregivers in the United States is currently ongoing, and she invites 18-25 year old caregivers to contact her if they are interested in participating in her research study. You may learn more about her research by watching the following video: https://youtu.be/Pcte_hA12LI
 Erikson, E. H. (1968). Identity: Youth and crisis. New York: Norton.
 Levine, C., Hunt, G. G., Halper, D., Hart, A. Y., Lautz, J., & Gould, D. A. (2005). Young adult caregivers: A first look at an unstudied population. American Journal of Public Health, 95(11).
 Hunt, G., Levine, C. & Naiditch, L. (2005). Young caregivers in the U.S.: Findings from a national survey. Bethesda, MD: National Alliance on Family Caregiving [in collaboration with the United Hospital Fund].
 Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist, 55, 469-480.
 Becker, F. and Becker, S. (2008) Young adult carers in the UK: experiences, needs and services for carers aged 16-24. London: The Princess Royal Trust for Carers.
Compassion fatigue is a weariness of body and spirit, caused by the never-ending demands of caregiving. This form of burnout can come on quickly, and before you know it, you feel like you’ve hit the wall. You may even wonder if you can continue to be a caregiver. There are steps you can take to alleviate the symptoms of compassion fatigue. Your goal is to stop compassion fatigue before it stops you.
Assess the situation. Exhaustion may cloud your judgment and things may not be as bad as they seem. If you are unable to do this on your own, ask for help.
Consider your overall health. Do you have physical problems of your own, such as arthritis, or a sprained ankle? Illness can slow you down and change our outlook.
Check your support system. Family members and friends may have moved away, and although you feel alone, you can shore up your support system. This takes time, and is worth your time.
Determine if you’re down or depressed. There’s a huge difference between the two and you need to know the differences. You’ll find helpful articles on the Internet and other resources at the public library.
Talk to a trusted family member, friend, or colleague. One person can get you through a dark time. Venting your feelings makes you feel better, but don’t share too much at once. You don’t want to wear out the other person.
Each day, try to have one meaningful conversation. This conversation may be with a health professional, another family caregiver, certified counselor, or religious leader. Contact a friend that you haven’t seen in weeks.
Build “me time” into your days. A few minutes of doing something you enjoy, such as knitting, can boost your spirits. You may even wish to sign up for an adult education course.
Stay physically active. A short walk, 15 minutes in your neighborhood, can change your outlook. Your loved one may belong to a health club and the two of you may exercise together.
Take care of you. Don’t let others tell you how to do this. You’re the person who knows you best, and what makes you feel good.
Retain selected social contacts. Options include going out for coffee, attending a meeting, or having dinner with friends. A few minutes away from the demands of caregiving can save your day.
Monitor your self-talk. Once negative self-talk gets started, it’s hard to stop it, and will continue unless you take action. When a negative thought comes to mind, try to balance it with a positive one.
Affirm your caregiving with words. Writing affirmations about caregiving can change your attitude in surprising ways.Keep your affirmations short. One-sentence affirmations are easier to write and remember.
Those who work with the dying are familiar with patients seeing long deceased loved ones, angelic beings, even hearing music and comforting voices as the patient nears death. Deathbed phenomena have been documented in the days, weeks, and months before death since the 1500s. Often confused with hallucinations, deathbed phenomena can bring comfort to patients and caregivers if those involved know what they are experiencing. This talk will explain deathbed phenomena and present on-going research about the topic. Martha Atkins scares accounts from the dying and bedside witnesses.
Imagine how you feel on a roller coaster. You start of slowly and climb a steep incline until you reach the top and then quickly descend, screaming until you reach the bottom, and then you begin to climb slowly once again.
Repeating this pattern occurs in relationships, school, on the job and in caregiving.
Case in point:
When you begin to care for your loved one, you both adjust slowly to a new routine– until a crisis occurs and you feel yourself descending rapidly, “screaming” until the crisis abates. Then you slowly creep back up to a normal pattern once again.
Homeostasis is the scientific term for the ability to maintain a constant internal environment in response to environmental changes and it is a unifying principle of biology.
Each of you can recall some events that mirror a roller coaster in your life. From now on, when you are experiencing a crisis, remind yourself that things will resolve and mimic the pattern of homeostasis. It might not always look like we want it to but, no matter what, there will be a change, and you will return to a feeling of stability and a constant internal environment.
A professional flutist, Toshiro Mitsutomi, developed 3 tips to evoke dementia patients’ memory and their life successfully during his 40years career: 1)play close 2)play at the same eye level 3)looking in the eye while playing. He actually demonstrated it by performing his original composition in the TED audience.
Music saves health care – Musicians play the role of nurse through the practice of music.
Toshiro established the female orchestra “flumus” for the purpose of supporting female artists. He founded the Music Hope project which implements a variety of workshops that strengthen the ties of “music”, “body”, and “heart” through playing music, dancing, exercises, and breathing in order to provide health support and create a societal contribution for musicians and mainly for municipal facilities such as medical institutions, nursing homes, schools and educational institutions. They also perform concerts for all of the caregivers and nurses, and continue to support people with the infinite power of music.
This talk was given at a local TEDx event, produced independently of the TED Conferences. There is power in grieving intentionally and purposefully. Telling her own story of loss, Elaine Mansfield explains the use of ritual as a tool for empowerment for life’s most challenging times.
Elaine Mansfield is a writer and bereavement educator who has lived on land overlooking the Seneca Lake Valley since 1972. She leads bereavement groups and workshops, and writes for Hospicare and Palliative Care of Tompkins County. Her writing reflects her forty years as a student of Jungian psychology, mythology, meditation and nature. Until 2011, she was a nutrition and exercise counselor. Since her husband’s death in 2008, her work has focused on healing, finding meaning, and creating a new life after loss. Elaine’s book “Leaning into Love: A Spiritual Journey through Grief” was published by Larson Publications in October 2014. The poet Naomi Shihab Nye wrote, “This magnificent, profoundly moving book gives encouragement and solace to all.” Elaine writes a weekly blog about life’s adventures and lessons at elainemansfield.com/blog.
For close to 40 years, not-for-profit Road Scholar has made it possible for adults on limited incomes to experience its educational adventures through a generous financial aid program. In 2015, it expanded its financial assistance to individuals caring for an ill or disabled spouse or family member. In all, the organization has dedicated $250,000 in annual funds to make the enriching benefits of lifelong learning accessible to all older adults.
Road Scholar is actively seeking applicants for these new, $1,300 caregiver grants for caregivers to offset the cost of attending a U.S. based Road Scholar learning adventure. We are reaching out to caregiver support groups, senior citizen centers, adult day services groups and organizations like thecaregiverspace.org to get the word out. Interested applicants can visit www.roadscholar.org/caregiver to learn if they are eligible.
Reverend Geoffrey Kerslake, Episcopal Vicar of the Archdiocese of Ottawa, kindly shared this statement on caregiving:
Caring for a sick or suffering family member or friend is a tremendous act of love and service. The care provided is proof to the ailing person that they are loved and appreciated and that they do not suffer alone. The gift of being present to another person in their suffering is one of the noblest, most charitable acts we can do for someone. Jesus in the Gospel of St. Matthew speaks these words: “truly I tell you, just as you did it to one of the least of my brothers or sisters you did it to me.” (Mtt 25.40) Serving others in their suffering is a way we encounter and serve Jesus Christ himself.
But being a caregiver can be a very demanding service of love. Oftentimes one person becomes the primary or sole caregiver at a great personal cost. We need as a community to support those who are caring for ill and suffering family and friends. The local parish community can be a source of support and may be able to offer help for caregivers. Approaching the pastor to share the circumstances of the illness or chronic condition is a way to both spiritually connect with the parish community as well as to find support for the caregivers. Even if the support consists mostly of a listening ear, this is a great benefit to caregivers who often feel disconnected with little time or energy to reach out for support for themselves.
Some parishes have a pastoral care team which is able to do home or hospital visits in addition to the ministry of the parish priest. The great blessing of periodic Holy Communion is a tremendous source of encouragement, grace and strength accompanied by a personal visit with prayer.
Parishes may have also have scripture study or prayer groups where caregivers can spend a few moments encountering the Lord in reflection and prayer with others, thus also increasing social contact outside of the place of care. Caregivers needs to be recipients themselves of attentive listening and social support.
Some parishes also have bereavement groups to help caregivers cope with the loss of a loved one which can be especially difficult after much time spent together meeting the needs of those who required constant care. Sometimes caregivers can feel themselves adrift after the death of their loved one having spent so much time and love caring for someone else that their own needs were set aside. The support of a parish community can be very helpful.
Even when it is difficult to find a few moments away, we can always find a couple of minutes for a quick, heart felt conversation with God – which is what prayer is all about: spending time speaking and listening to God who loves us so much He sent his Son Jesus to walk our walk, suffer and die for our sins, and rise again so that we might have the possibility of eternal life.
In the Catholic tradition, we have prayers like the Our Father, Hail Mary and Glory Be, as well as devotions like the Rosary and Divine Mercy chaplet, that many find comforting and which require little effort to pray, which is especially important when caregivers are weary and are seeking strength and consolation. Many people own a Bible or a weekday Missal with the daily Readings or have access to a televised Mass or Christian TV networks like Salt and Light or EWTN. A few moments spent catching reading the Word of God or listening to a talk or special presentation can also be very encouraging.
The best spiritual support for caregivers is to put them in contact with their local parish where they can have a personal encounter with the pastor and fellow parishioners who can help them on their often difficult journey. Each person’s faith journey is unique and what nourishes some does not prove as helpful for others, hence the need for personal contact and attentive listening.
The term “new normal” is so common it’s become part of everyday conversation. You may have waited for a new normal to develop after you became a caregiver. But even with a daily routine, you may not feel like you have a new normal, and wonder why. What are the problems?
Routines can yield different results
After we moved into our wheelchair-friendly townhome my husband settled into a routine quickly. With intensive therapy my husband’s paralyzed legs started to improve. He learned to stand, to pivot on one foot, and to take steps with the aid of a walker. Therapists asked him to practice walking every day and he can walk the width of our home twice. Today he didn’t walk because he felt so weak. While a routine provides structure to caregiving, it may not be the same every day.
Adjusting to a new place takes time
We lived in our former home for more than 20 years and were used to three levels, a beautiful yard with wildlife, a garage with drop-down stairs and attic storage. As beautiful as our townhome is, we don’t have enough storage space, and always seem to be looking for things. I used to have a home office with a wall of book shelves and a large work counter. Now my “office” is a desk in a notch cut from the laundry room. Some days my husband and I feel like we’ve lived here for years. Other days we feel like we just moved in.
Adjusting to disability is a daunting challenge
When it comes to being a good sport, myhusband is a champion. He has adjusted to so much—three emergency operations, a spinal stroke that paralyzed his legs, the need for a colostomy, having the colostomy, and caring for it. This care involves new medical terms, equipment, and procedures. Neither of us feel colostomy care is our new normal; everything about the process is abnormal.
Chronic disease takes a toll
If your loved one has cancer, heart disease,diabetes, or another chronic disease, you know it takes a toll over time. With medication and specialized care, chronicdisease may stabilize for months or years. However, the word chronic implies that the disease will worsen. Since you can’t predict your loved one’s decline, or how long she or he will live, you can’t settle into a new normal.
Life may be drawing to a close
Several times, in the last two years, Ithought my husband would die, and had acute anticipatory grief. I recognized the feeling because I experienced it before, and written extensively about it. Unless you take steps to combat anticipatory grief, it will take over your life. Life is up in the air and you wonder if anything will be normal again.
Family caregiving is a challenging enough, without looking for a new normal. We may never achieve this goal and that’s okay. Caring for a loved one, and savoring each moment, is what’s important. Love is our normal and gives us strength and courage for the journey.
Religion is an important source of strength for many of our members, so we’re asking clergy from different religious traditions to share how their members mark the end of a life. Today we’re speaking to Tracee Dunblazier, a spiritual empath, shaman, educator, and spiritual counselor based in Los Angeles, California.
What does your faith teach about happens to people when their lives end?
My path believes in the eternal spirit. Every person, at the end of their lives begins a transition or ascent into spirit. No matter the cause of death, known or unknown, they begin an awareness of spiritual dimensions of energy. Based on how they are living those new spiritual dimensions can be positive and beautiful or conflicted and tumultuous. Every person is seeking to justify their life with peace.
As a spiritual counselor, how do you comfort the dying?
All people will comfort the dying with the degree of comfort they have with their own mortality and experience with death. As an empath and spiritualist, I have daily, continually, and deliberately addressed my own mortality by witnessing for others their own transitioning experience. The process of losing interest in the physical and opening their awareness to the emotional, astral, and spiritual dimensions. Where illusions, delusions, angels and other spiritual beings reside.
How do members of the community traditionally respond to the death of one of their members?
As spiritualists, often times, members of the community relate to death in a less emotional or detached way which can sometimes be hurtful or offensive to the close grievers of the loved one who has died. Of course this is not the intention but is quite common. They also support with prayer and deliverance.
Is there a service to memorialize the dead? What is it like?
Usually. A memorial party or celebration with a memorial altar being constructed with sacred items and a place that loved ones can place important or meaningful items. The memorial altar is usually kept for 30 days, sometimes more.
What rituals of mourning are there in your faith?
An altar dedicated to the transition sometimes months in advance as death is recognized as a transition from one form to another. Creating a sacred space to focus the energy of the person in transition and also to focus the grieving energy of the loved ones all into a place of acceptance and communication of the transition.
Is there a particular amount of time allocated for grieving?
No, it is accepted that everyone will grieve in their own way and that in some situations their is complicated grief as their isn’t any conscious understanding of the death and that there may still me living experiences that were left unresolved. The resolution of those experiences at some point will be a part of the grieving process.
What text or passage would you suggest to a member of your faith community who is grieving?
“We must learn to embrace death and other life transitions openly and without fear and to recognize that there is a spiritual and emotional process inherent in each change. Giving yourself and each other the time to create space and opportunity to celebrate each other during the final days of life, instead of in the fear, shock, or shadow of death itself. We can’t forget that for every ending there is a new beginning.” The Demon Slayer’s Handbook: A Practical Guide to Mastering Your Inner World byTracee Dunblazier
What words would you share to comfort members of our community who may be mourning?
Do everything that you can to embrace your grief and accept the loss of your loved one in the physical world so that you may open to their spirit and love from the spiritual world. Remember that there is no loss of love, ever. They are waiting for you to open to their new form of love and communication that is accessed because the heavy emotion of grief has prepared you.
Is there a tradition from your faith that might be comforting for people of other faiths?
Creating a memorial altar for the loved one and then working with it daily through prayer and conscious intention to grieve the loss, acknowledge what you miss and every other aspect of your grief, and then eventually to the new life you’d like to cultivate without the person. Keeping a daily transition journal will be helpful to complete old emotional and spiritual dynamics that you had with the person so that you can renew your heart for yourself first and eventually for them in the new way. Doing these things will allow for a streamlined grief process and cultivation of the understanding of what it actually means to be eternal.
Tracee Dunblazier, GC-C, CCDC, spiritual empath, shaman, educator, and spiritual counselor is based in Los Angeles, California. Tracee specializes in grief counseling, energy dynamics, intuitive counseling, Shamanic healing, past life regression, soul recovery, transition strategy, addiction transformation, and space clearings. In 2005, Tracee founded itztime.com to offer resources, education, and strategies for other practitioners as well as those just embarking on their spiritual path, and in 2012, Iamtoostrong.com, a site where people can tell their stories of overcoming and transformation.
As a multi-sensitive, Tracee blends information that she receives intuitively with different modalities to create a unique healing plan for every client. Every session is focused on freeing the client from their presenting issue to release, empower, and heal – no matter what the condition. Tracee’s compassionate, humorous, down-to-earth style supports and empowers clients as tender topics are addressed during the session.
Tracee’s been a guest on many prominent television and radio programs informing others about spirituality and sacred ritual practices. An accomplished author, Tracee’s published articles cover many subjects related to spirituality and her blog breaks down current events and daily energy dynamics that everyone experiences. Tracee holds workshops throughout the year as well as providing mentoring programs that teach spiritual development and energy dynamics to both the novice for self-healing and the professional practitioner.
Religion is an important source of strength for many of our members, so we’re asking clergy from different religious traditions to share how their members look at disability. Rev. Dr. John Joseph Mastandrea of the Metropolitan United Church in Toronto, part of the United Church of Canada. He is a certified Labyrinth Facilitator, Stephen Leader, and Spiritual Director following in the footsteps of Ignatius Loyola and Teresa of Avila.
Are there any pieces you’d share with someone struggling with a disability or the strain of caregiving?
For someone struggling with a disability, I would share the story of Temple Grandin.
Temple Grandin, Ph.D., is one of the the most accomplished and well-known adults with autism in the world. Now her fascinating life, with all its challenges and successes, has been brought to the screen with the HBO full-length film “Temple Grandin”, starring Claire Danes, which won seven Emmy awards and a Golden Globe. The movie shows her life as a teenager and how she started her career.
For someone dealing with the strain of caregiving, I would let them know about Circles of Care. Circles of Care are where a team of people, usually family and friends, coordinate care support to offer relief for the primary caregiver. There can be 80 people taking shifts to provide 24/7 care for a friend. Locally, they’re offered by Trinity Home Hospice and Casey House. This Circle of Care is coordinated by the paid accountable staff person.
Are there any articles of faith or scripture that address disabilities?
Come to me, all you who are weary and burdened, and I will give you rest. Matthew 11:28,29
Have you done anything specifically to make your faith more inclusive for people with disabilities and their caregivers?
My attitude has transformed to that of authentic empathy. My good friend has a mother with Alzheimer’s. My friend is the primary caregiver and I have been a compassionate presence.
Does your religious group have any formal support systems for the families of people with disabilities or illnesses? What about informal traditions of support?
The Met Care team offers support through a program of intentional phone calling, visiting and letter writing. Our members also provide transportation and other assistance on an informal basis.
What would you like to share with caregivers who have struggled with their faith? What would you share with caregivers whose experience has deepened their faith?
It’s okay to struggle with your faith. There is permission to be angry with God. Thomas Merton was an atheist for years after the death of his, mother, father and brother. Later Thomas Merton became the greatest Christian Mystic of the 20th century. I recommend The Seven Storey Mountain.
I would ask caregivers whose experience has deepened their faith if they would share their story with others.
Recently, I served as an interfaith chaplain for the Panam and Parapanam games. It was a moving experience to get to know the Para-athletes. I’d like to share this letter from a Brazilian athlete:
Dear Parapanam Chaplains at the Multifaith Centre,
Thank you for taking the time to listen to my story as a parathlete from Brasil.
I had a tragic accident in my youth that paralized me from the neck down. Through years of rehabilitation and therapy I am able to use my upper torso.
I thought my life would be forever filled with limitations. Then the opportunity came for me to be a parathlete first in native brasil and later the doorway to international competitions were opened. My event is discuss and javelin, it is with deep gratitude that the invitation came to compete in the Parapanam games. Thank you for your prayers and steadfast leadership.
I may never win but have special gratitude for the opportunity to participate in the Toronto 2015 Parapanam games.
Luis Raffael Rodriques
What sources have helped you celebrate your faith in a way that’s inclusive and accessible? What guidance would you give to other faith leaders?
Some people think they don’t need to do anything to find closure. When you pack it up, grief turns into a volcano. Living emotion and attachment is important. Start by being a presence. No answers required, just compassionate, intentional presence.
Reverend Dr. John Joseph Mastandrea became minister of spiritual growth and pastoral care development at Metropolitan United in 2000. John Joseph cut his teeth in the Etobicoke area of Toronto and now resides in Cabbagetown, he is “connected with the urban landscape, with the internal and eternal song.”
He has Bachelor of Science in Chemistry, Master of Divinity, Master of Religious Education, Master of Arts and Ministry of Spirituality degrees, all from the University of Toronto. John Joseph completed his Doctorate from Chicago Theological Seminary, May 2009. Ordained in 1989, he is a certified Labyrinth Facilitator, Stephen Leader, and Spiritual Director following in the footsteps of Ignatius Loyola and Teresa of Avila. John Joseph believes in nurturing body, mind and spirit. Monday to Friday at the local gym, reading and meditating daily weaves three key components of life. Nurture for self to nurture for others.
John Joseph’s volunteer work for the church and community includes: Chairperson of the Toronto South East Presbytery Pastoral Relations Commission, membership in the Toronto Area Interfaith Council, Police Chaplin to 51 Division, Membership in the Toronto Rotary, Chair Person the Toronto Rotary Community Services Committee and Chair of the World Aids Concert Committee a benefit for Casey House. Volunteer ministry has included positions as chairperson of the Worship and Liturgy Committee of Toronto Conference for four years, chairperson of the Mission Committee of Toronto South Presbytery, chairperson of the Planning and Development Committee and co-chairperson of the Christian Development Committee in York Presbytery north of Toronto, chairperson of the AIDS Committee of York Region since 1998, and member of the Pastoral Care Committee of York Central Hospital in Richmond Hill. He represented Canada as a delegate to the World Council of Churches in Geneva, Switzerland, in February 1990.
John Joseph was awarded the Queen’s Diamond Jubilee Award in 2012 to celebrate the ongoing spirit of his community work in the surrounding neighborhood.
Today John Joseph seeks to meet people where they are and build the capacity for relations between people in a diverse spectrum of society.
Research reveals that most individuals with cancer have religious and spiritual beliefs, or derive comfort from religious and spiritual experiences. But what impact does this have on patients’ health? Recent analyses of all published studies on the topic—which included more than 44,000 patients—shed new light on the associations of religion and spirituality with cancer patients’ mental, social, and physical well-being. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the analyses indicate that religion and spirituality have significant associations with patients’ health, but there was wide variability among studies regarding how different dimensions of religion and spirituality relate to different aspects of health.
In the first analysis, investigators focused on physical health. Patients reporting greater overall religiousness and spirituality also reported better physical health, greater ability to perform their usual daily tasks, and fewer physical symptoms of cancer and treatment. “These relationships were particularly strong in patients who experienced greater emotional aspects of religion and spirituality, including a sense of meaning and purpose in life as well as a connection to a source larger than oneself,” said lead author Heather Jim, PhD, of the Moffitt Cancer Center in Tampa. Dr. Jim noted that patients who reported greater cognitive aspects of religion and spirituality, such as the ability to integrate the cancer into their religious or spiritual beliefs, also reported better physical health; however, physical health was not related to behavioral aspects of religion and spiritualty, such as church attendance, prayer, or meditation.
In the second analysis, the researchers examined patients’ mental health. The team discovered that the emotional aspects of religion and spirituality were more strongly associated with positive mental health than behavioral or cognitive aspects of religion and spirituality. “Spiritual well- being was, unsurprisingly, associated with less anxiety, depression, or distress,” said lead author John Salsman, PhD, who conducted the research while at Northwestern University’s Feinberg School of Medicine in Chicago, but is now at Wake Forest School of Medicine in Winston-Salem. “Also, greater levels of spiritual distress and a sense of disconnectedness with God or a religious community was associated with greater psychological distress or poorer emotional well-being.”
The third analysis pertained to social health, or patients’ capacity to retain social roles and relationships in the face of illness. Religion and spirituality, as well as each of its dimensions, had modest but reliable links with social health. “When we took a closer look, we found that patients with stronger spiritual well-being, more benign images of God (such as perceptions of a benevolent rather than an angry or distant God), or stronger beliefs (such as convictions that a personal God can be called upon for assistance) reported better social health,” said lead author Allen Sherman, PhD, of the University of Arkansas for Medical Sciences in Little Rock. “In contrast, those who struggled with their faith fared more poorly.”
Many researchers have conducted literature reviews on the impact of religion and spirituality on cancer patients’ health, but none have taken such thorough and painstaking efforts to analyze the data in such detail. “To date, this series of meta-analyses represents the most comprehensive summary and synthesis of a rapidly growing area of psychosocial oncology: the role of religion and spirituality for patients and survivors managing the experience of cancer,” said Dr. Salsman.
Future research should focus on how relationships between religious or spiritual involvement and health change over time, and whether support services designed to enhance particular aspects of religion and spirituality in interested patients might help improve their well-being. “In addition, some patients struggle with the religious or spiritual significance of their cancer, which is normal. How they resolve their struggle may impact their health, but more research is needed to better understand and support these patients,” Dr. Jim noted.
Written in coordination with Wake Forest School of Medicine, University of Arkansas for Medical Sciences & Moffitt Cancer Center.
CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology and course of human cancer. CANCER is published by Wiley.
“Religion, Spirituality, and Physical Health in Cancer Patients: A Meta-Analysis.” Heather S.L. Jim, James Pustejovsky, Crystal L. Park, Suzanne C. Danhauer, Allen C. Sherman, George Fitchett, Thomas V. Merluzzi, Alexis R. Munoz, Login George, Mallory A. Snyder, and John M. Salsman. CANCER; Published Online: August 10, 2015 (DOI: 10.1002/cncr.29353).
“A Meta-Analytic Approach to Examining the Correlation between Religion/Spirituality and Mental Health in Cancer.” John M. Salsman, James E. Pustejovsky, Heather S.L. Jim, Alexis R. Munoz, Thomas V. Merluzzi, Login George, Crystal L. Park, Suzanne C. Danhauer, Allen C. Sherman, Mallory A. Snyder, and George Fitchett, PhD. CANCER; Published Online:August 10, 2015 (DOI: 10.1002/cncr.29350).
“A Meta-analytic Review of Religious or Spiritual Involvement and Social Health among Cancer Patients.” Allen C. Sherman, Thomas V. Merluzzi, James E. Pustejovsky, Crystal L. Park, Login George, George Fitchett, Heather S.L. Jim, Alexis R Munoz, Suzanne C. Danhauer, Mallory A. Snyder, and John M. Salsman. CANCER; Published Online: August 10, 2015 (DOI: 10.1002/cncr.29352).
Anyone who’s ever undertaken a huge project, such as completing their finals or taking on an important client project at work, will tell you that it can be mentally exhausting. Once the task is complete, it can feel as if you’re totally emotionally drained, with no energy left to interact with others or even do anything.
If this state of affairs is left unchecked, other problems can quickly come about in the mentally exhausted person’s work, family and social life. Luckily though, there are ways to recover when you’re mentally exhausted, and ways to avoid the situation in the first place.
Chances are you spend all day replying to emails, checking Facebook and texting people. Technology is a fantastic tool, but when you’re emotionally drained it’s just one more thing that’s demanding mental energy you just do not have.
I have frequently found myself in the crosshairs between the needs of a person suffering from major mental illness and the exhaustion, anxiety and frustration experienced by the loved-one caring for them.
It is difficult for clinicians to navigate this terrain, speaking to the immense difficulty of the family members themselves. I have found that most of the roadblocks in moving forward is lack of understanding of mental health issues and the immense societal stigma and ignorance that accompany them. Family members caring for the chronically mentally ill need psychotherapeutic support themselves, both because of the stress that is always a side effect of caring for the loved one, and the family dynamics that are brought to light in a patient’s treatment.
Mental health symptoms are reinforced, and sometimes caused, by early dysfunctional experiences in the family. This could be what we call “Big T” trauma (molestation, domestic violence, addiction) or “Little T” trauma (emotional neglect, coldness). So when a caregiver is in the depths of caring for a loved one with mental illness, or the identified patient (IP), these often unresolved parts of their history are brought to the light, causing stress for the caregiver themselves.
However, the response of the caregiver is often to buckle down and ignore their own emotions and focus on the IP, either because they do not want to cope with the problems in the family system that have been brushed under the carpet, or they compare themselves to the IP and come to the conclusion that their needs pale in comparison.
This is reinforced by societal stigma against mental illness and lack of understanding it engenders. This could be a whole article in and of itself — but it should be noted this greatly compounds a caregiver’s ability to address their own needs.
Hopefully, when a caregiver finds themselves involved in the mental health system caring for their IP, they will encounter a seasoned and resourceful clinician who can help steer the conversation towards a more holistic understanding of the problem and address the needs of the caregivers. However, this is likely not to happen in our current healthcare environment, where turnover and high volume often result in lack of nuanced care.
As a caregiver, you know what I’m talking about. You’re here because you know that you have to seek support yourself. Armed with this knowledge, I encourage caregivers to seek counseling themselves, either in the context of the IP’s treatment or on their own. In addition, there are many support groups specifically for family members coping with another’s mental illness, shown at the bottom of this article. It can be immensely healing to speak about these struggles with others in the same position. You can connect with other caregivers of people with mental illness here on the forums.
Psychoeducation is an immensely important component. Psychoeducation refers to the information given to the mentally ill and their family to help empower them and deal with the symptoms in the most optimal way. I have seen the power of this basic and essential tool firsthand many times. While hearing a diagnosis or prognosis can sometimes be shocking and troubling, more often than not family members and patients are relieved and experience it as a concrete way to move forward.
As a therapist, I see a main facet of my role as explaining diagnoses and helping patients and family’s process them, with an emphasis on the fact that they are “working” and highly subjective, and designed to help facilitate treatment, not define the person. For example, a patient is suffering from depression, not depressed. It’s just like how if you have cancer people say you are suffering from cancer, not that you’re cancerous.
Also essential to this is the way the problem is communicated. Mental health issues can be difficult to treat from the perspective of the clinician, patient, and family because of its abstract quality. I cannot give you a blood test to determine you have depression. However, I can affirm to patients that their symptoms are real, a disease, and not just “in their head.” Most of the time they are highly treatable with good outcomes, and this is equally important for the caregiver.
Resources for caregivers of people with mental illness
When you’re taking care of someone it can seem impossible to find time to eat, sleep, and bathe — nevermind look for love. It isn’t easy, but there are other caregivers out there who are going on dates and embarking on new relationships. Remember, everyone has their own situation. What works for one caregiver might not work for you.
Are you going on dates? Share your tips in the comments!
It’s good for you
Having a social life — and a dating life — aren’t just for fun. They’re important for your mental health. Caregiving is incredibly emotionally demanding and you need to maintain a balanced life in order to keep giving to someone else. Even an hour or two a week of social time makes you a better caregiver, because it recharges you. Plus, everyone loves bad date stories.
It’s good for the person you care for
It’s not healthy for one person — you — to be their only friend or source of support. It’s good for them to be around other people and get to socialize. Social isolation is terrible for you and the person you care for — don’t lock yourself up in solitary confinement.
It’s okay to ask for help
Needing to rely on others isn’t a sign of weakness — no caregiver should be on their own. Of course, the logistics of finding someone to provide care in your absence can be formidable. Some of us have an easier time than others — finding someone to keep an eye on my adorable autistic niece is a piece of cake, while I have to beg and cajole to get someone to keep my ornery uncle company, and neither of them requires complex medical care.
Find friends — and dates — online
Don’t know anyone you’re interested in dating? No problem. Sign up for an online dating profile, many of which are free. If you’re not comfortable joining a dating site, Meetup.com can help you meet other people to socialize and speed up the process of meeting someone the old fashioned way. Your local library will probably have a calendar of events, too.
It’s okay to cut corners
We all have only 24 hours a day — you decide how you spend it. Are all of your non-negotiable tasks really non-negotiable? Are there shortcuts you can take or corners you can cut with chores? Are you keeping busy to distract yourself from sadness? Take a look at the calendar and make a realistic decision about how often you can go out and then follow through. Don’t decide there’s no time for you in your life.
Get creative with finding help
Beyond asking for help from family and friends, there might be caregiving volunteers available through a neighborhood organization. Elder Helpers has volunteers around the country; Wake County, NC has the Center for Volunteer Caregiving; Caregiver Companion serves parts of Indiana. Please share information on other organizations in the comments below.
You can also trade time with another local caregiver. It’s also worth it to find a professional caregiver who you’re comfortable with. Even if you don’t use paid care often, having a professional caregiver who knows your loved one is priceless when there’s an emergency.
Going on a date doesn’t have to mean dropping a bunch of cash. Many museums have free entry at specific times or free programs. Most art galleries don’t charge admission — and even have opening parties that the public can attend. If it’s nice out there are often free outdoor movies, dancing lessons, and concerts — or you can enjoy a stroll or a picnic. Ask around to find out which cafes have good specials and affordable prices.
You’ll keep the good ones
Some people will dismiss you as soon as they realize you’re a caregiver, but that might be a good thing.It’s better to realize someone’s not ready to deal with real life early on. People who stick around are going to be the type of people who will stick it out for the long-haul.
You’ll skip the bad ones
All too many of us have been guilty of going on second or third dates with people we aren’t interested in because why not? Well, when you’re paying $20/hr or have begged a friend to come over for a few hours there’s a compelling reason to not waste time with someone you’re just not that into.
You’ll find someone who understands that caregiving is your priority. Even if caregiving is your top priority, if you want to pursue a serious relationship with someone, they need to be one of your priorities, too. Things come up — a lot! — and that’s fine, but you need to be extra sure to let them know what’s going on. Being a no-show or vanishing for weeks on end isn’t an acceptable way to treat someone, regardless of your caregiving responsibilities.
Remember, no one thinks dating is particularly easy or fun all of the time. It’s okay to take a break from dating — or decide you’re not interested in a romantic relationship at all. But if you’re looking for love, it’s important to make that a priority in your life — and seek out the help and support you need to make it happen.
The mocha itself is at best mediocre. I get it for free from one of those institutional coffee machines you find in hospitals or convenience stores. I press one of six buttons–hot chocolate, mocha, cappuccino (regular or decaf) or coffee (regular or decaf). The machine ponders my choice. Then it grinds and sputters and spits my beverage into a 6-ounce cup.
This particular machine resides in my mother’s senior adult apartment community. When my mother moved to my city, I was glad that the transition was not as difficult as other parental moves I had heard about. My mother pared down her stuff and moved with some ease from her house of 45 years into a studio apartment. The ascetic quality of her new space suits her just fine.
More difficult was the change her move sparked for me. Overnight my schedule became tied to hers. My mother’s life became less cluttered, mine more cluttered.
That is how the mocha machine came to dispense more than just a mocha. I organize my mother’s medications every week. I also do her laundry. Once these tasks are done, she and I go downstairs to wait for her lunch hour. While we wait, I sip on a mocha.
I have never been a devoted mocha drinker, but the day the mocha machine was “out of order,” I was too. I had come to anticipate drinking that Styrofoam-flavored, somewhat chocolate flavored drink.
I sat to wait with mother the day the mocha machine was on the fritz. The stories and conversations went on around me as usual, and I found myself laughing and joining in. The weekly mocha had helped me in those initial months of transition to sit and listen and hear the wisdom-infused storytelling of my mother and her new friends. It had offered Spirit-sweetened seasoning to my caregiving activities. Now, even without the mocha, I was connected somehow.
I learned that day. I need those ritual moments that add everyday sacred seasoning to caregiving activities that can become little more than tedious and wearying tasks. The seasonings do not have to be elaborate or expensive. A mediocre mocha will do, if we treat ourselves to that mocha with the intent of enjoying a moment of holy feasting with holy people in the midst of ordinary, even mundane, life rhythms.
An altered version of this image/reflection appeared on another website. That version was not about caregiving.