In the early 2000s while counseling children and families in El Dorado County, I had the joy of working with Jennifer Hayes. As a supervisor, she taught me a great deal about children with attachment issues, compassionate care, and how to keep centered when collaborating with child protective services. We also share a love of writing. Jennifer now practices in Bingham Farms, MI. Her step-son Dan is currently battling leukemia.
Because so many of my readers have a connection to loss, I asked Jennifer if she would share this experience, and how they are coping as a family. The following contains her lovely insights as she and her family walk through the darkness of cancer, and the moments of light that shine bright….
“When I write social media posts and blog entries I try to walk a hard to define line between offering a personal perspective and not revealing too much about myself. It is the ever present code of the therapist – keep your private life private. It binds us to silence and continually limits how and when we use our voice. Today I am going to take a risk and fully break that code.
Three years ago this April, the morning after his 16th birthday, my step-son Dan went to the ER with severe pain in his hip and odd, small red spots covering his ankle. Within a few hours they diagnosed him with Leukemia, ALL. Getting the news was literally breath-stopping. Since that day it’s been a lifetime.
If you’re going to get cancer, Leukemia is the one to get. In kids, the prognosis, especially for ALL, is excellent. You have a really awesome chance. An 80 – 90% survival rate.
So we felt lucky. Until we fell out of the awesome group. Last year on New Year’s Eve, Dan had a bad headache he just couldn’t shake. With cancer you learn, small things often turn out to be big things. Dan had relapsed. It was contained to his CNS instead of his bone marrow, which, again, had a very good prognosis. We had fallen out of the super star group, but we were still in a good one. Not quite as lucky, but still, lucky.
Two weeks ago, on New Year’s Eve, we found out Dan has relapsed again. So we keep getting kicked out of the lucky groups. We are way out of the lucky group now. Our odds are not as bright.
If all goes as planned, just in time for his 19th birthday, Dan will undergo a bone marrow transplant. If you really want to know what this means, google it. The short story is, it is a long, incredibly brutal process. I think it will make the 3 years of treatment he’s already been though look like child’s play. The year to come will be hellacious.
How do you walk through this? As my husband said, there’s no manual for this. We are looking into this dark room and we told life, “Please don’t make us go in there.” But life is not listening. How do we walk down this road? How do you send your child into this lion’s den?
You do it because you have to. Because you have no choice. Dan has no choice. The only choice in the matter is how we walk down it.
So that line resonates today. “Get busy living or get busy dying”.
We don’t know what this future holds. We don’t know if we are on the good road or the bad road. We will not know for some time. So we will live in the realm of uncertainty. Of waiting, always, for test results. To read the tea leaves of what those results mean. It’s a really crappy road to be on. We would like off. But we don’t get that choice. So we can only decide how we walk it.
What Dan has always chosen, in a stunningly compelling way, is to get busy living. Every single time cancer has come and hit him again, he has decided to live anyway. It’s not just the relapses, it’s the things he’s missed because he was too sick, it’s the bouts of shingles, losing the skin on his feet, a mouth full of sores, and spinal headaches. It’s the moment Dan, a passionate tennis player who lived for the game, found out his tennis days were essentially over because the steroids caused his hip bone to collapse. At 18 he needs a hip replacement.
Yet, Dan has always moved toward living. Toward what he can grasp rather than what he has lost. It is Dan doing pushups in a hospital gown while hooked up to an IV. It is Dan’s response to losing his hip and tennis in one fell moment. Within a day he told his dad, “I want to get a membership at the Y. I’m gonna start swimming.” Because that’s what Dan does.
There are so many ways, times, and points along this road Dan could have gotten busy dying. But he has not. He always, every time, choses to get busy living. He played in a state tennis tournament, winning an intense 2-hour match, the day after he got out of a particularly difficult hospital stay. He played a regional match on the collapsed hip, falling in pain at one point, only to get up and win that match. He got into the University of Michigan this year and got himself an internship working in a lab with Leukemic stem cells. It’s all he’s ever wanted. Just to get busy living.
Dan has never played the ‘cancer card’ to get anything. Despite my egging him on. Not even to get cuts in line at Cedar Point. Who does that? Dan, who is too busy focusing on living. He has been my role model in how to walk this road. Dan is the human spirit in motion.
We now face an uncertain future. Maybe we face an exceedingly dark road. And in the midst of that, Dan, as always, choses to get busy living. Just when he started his college career at The University of Michigan – which by the way he legitimately got into despite Leukemia and a relapse – he now has to withdraw in his second semester. To face an incredibly brutal journey. This is a wickedly hard and unfair hit for a kid whose done nothing but work everyday to get to where he is. But it is what he got. And Dan, as I write this, is making jokes with his dad over text. He stuns me every single time.
For me and my husband, what we know about walking this road is this. If you get busy living, if you go and do your life, if you still laugh and still feel the sun on your face, it helps. It normalizes you and grounds you. It pulls you out of despair and let’s you know you will keep on breathing.
The alternative is to get busy dying. To sit in fear and despair, waiting on what is going to come. When you are busy dying, everything feels so much larger and infinitely heavier. So even as the specter of death sits in the room with us whispering, really, the only option is to get busy living.
Your choices are to focus on what you have or to focus on all that you have lost – or may lose. Neither focus will change the outcome, just how you walk to that outcome. We can go living or dying. Either way, the outcome is the same. But your experience of the road will be vastly different depending on your choice.
I think this is all we can do. Choose living. Amongst this living we have our dark and desperate moments, believe me. But the living keeps us from drowning in that endless abyss. The alternative would only give all of this darkness a crushing victory. When the day draws long and you look back over your life, you will find that you either did it living or dying. You get one life. You get on chance. Don’t waste it on dying.”
~To honor Dan and his journey to come, I am asking people to sign up for the bone marrow donor registry or to make a financial donation to the marrow organization. Signing up for the registry is easy and simply requires you to submit a cheek swab. The organization will mail a kit to you.
Every family going through this needs a donor. They do not do a bone marrow transplant if there are other options. If you become a donor you will give someone who is going to die a chance to live. Whatever donor we get will save Dan’s life. How do you ever measure this?
If you are an ethnic minority, please get on the registry. Due to a greater variation in tissue types, it is much harder for those patients to find a donor match, especially among African American patients.
If nothing else, please consider passing this post along to help get the message out.
Please go to http://www.marrow.org to find out more about how to sign up for the donor registry or to make a financial donation.read more
Twelve years ago today, my grandmother, Mary Ann Whipple died. She was, by far, the most important woman in my life. More than a grandparent, she was my mother. Her long life didn’t make grief easier. I got to love and bond with her longer. Life went full circle: her arms cradling my newborn body; later that tender touch with my own children; my arms around her as she left her tired body.
My grandmother’s body was a source of great joy to me. She was a grandmother of the ‘60s, so she did not “work out”, have Botox, or color her silver hair.
She wore a housecoat over her plump body. She was soft. As a young child, I would lie across her spongy, pillow-like lap while she stroked my head, sang hymns, and hemmed me into the most secure spot in the world.
During church, her hand on mine, I would trace the raised, blue veins that lay underneath her spotted skin.
She smelled of Nivea moisturizer, Cody pressed powder, and rose; scents that to this day cause me to inhale deeply and smile…and sometimes, like today, cry.
We baked. We ate! We delighted in calories: homemade jam, Swedish meatballs, divinity, fudge, and peanut brittle, pull-apart bread, green Jell-O with cottage cheese.
Rainy days and evenings were filled with dominoes, The Carol Burnett Show, and Lawrence Welk.
Life was slow. It was divine.
My grandmother remains present. She is there when I comfort my children when they are tired, or stressed, or sick. She’s beside me in the kitchen as I mix cookie dough with a wooden spoon. She is the quiet voice that asks, “Are you hungry? Tired? Need a hug? You seem a little hungry, or tired, or in need of a hug.”
My hands now have spots; raised blue veins map my hands like rivers. I never look down on them with disdain. In this way, my grandmother lives on in me, and so I embrace this.
I miss you. I love you.
Grandma, you are tattooed on my heart.read more
Scattered throughout our lives are periods of grief. The loss of a pet, the end of a relationship, termination from work, the death of a parent—all of these bring up a mixture of emotions, and force us to make adjustments. In time, most are able to accommodate these changes, create a new reality, and move forward. The loss remains a part of us, but does not define us.
But, there is a different type of grief. Brought on by sudden loss—death by suicide, accident, or murder—complicated grief is long lasting, and mimics thoughts and behaviors akin to those who have Post Traumatic Stress. Dru Ann Davis is all too familiar with complicated grief, and the impact it’s taken on her life. I met Dru Ann at her brother’s, Howard “Boots” McGhee, in Aptos, California. Their bond, support, and love for one another deeply touched me. Out of that time together, I spent several weeks gathering my thoughts, and how to honor Dru Ann’s loss…
On September 7, 2009, Dru Ann heard these life-changing words from a stranger: “Your kid is dead.” Her seventeen-year-old daughter, Desiree, was murdered in a drive-by shooting. Desiree was not a member of a gang. She was a carefree, quiet, seventeen-year-old girl who loved to sing. She’d had her driver’s license for just three weeks, loving the freedom of her car that an uncle helped purchase. On that September day, Desiree went to her friend’s for a barbeque. She never came home. Her killers remain at large.
Life for the survivor of a traumatic death can feel unmanageable, even after a significant amount of time. In the case of murder, the anger, violation, inability to protect one’s loved one, involvement in the justice system, and media coverage prolong and fuel the grief.
“I remember thinking: ‘Can I live without Dez?’ I knew I was going to, from this day forward, live in hell without her.”
Vague answers of Desiree’s whereabouts; rushing to a hospital, only to be told that Desiree’s body was not there; Dru Ann’s surviving daughter Taii learning of her sister’s death on social media; and an inability to see her deceased child amplified the horror for Dru Ann.
“The police would not let me be with my girl. I was told that the homicide detective would be calling me. I thought he would call me immediately, but it took him several days. Taii and I went home crying. When we reached home, I immediately got into Desiree’s bed, pulling the covers up over my face, trying to smell her before it should fade. I invited Taii to join me, but she couldn’t. We stayed in separate rooms, crying all night. It remains the very worst day of my life.”
“I have become a different person.”
Post Traumatic Stress Syndrome, often referred to as PTSD, is often associated with the intrusive thoughts and behaviors that military personnel suffer upon returning from service. Researchers in mental health have drawn similar links between trauma and grief over child abuse, natural disasters, and co-victims (those left behind) of suicide or murder, and the thoughts, feelings, and behaviors associated with PTSS.
Symptoms can include:
- Recurrent and intrusive thoughts about the event
- Sleep disturbances, including nightmares
- Avoidance of places, situations, or people that remind one of the trauma
- Loss of interest in activities that used to bring joy or pleasure
- Feelings of detachment from others
- Lack of interest in the future
- Feeling numb
- Extreme upset or anxiety when reminded of the trauma
In Dru Ann’s case, tasks such as grocery shopping, seeing foods that Desiree enjoyed, and interacting with others in public became overwhelming, bringing up waves of anxiety and upset.
“I have two poster size photos of Dez in her room that I talk to and kiss every day. I’ve almost worn one out. I turn her light on every night so she knows we want her home. I’m on my second pillow that I made from t-shirts her friends made with her face on them, so I have her to hug and sleep with. She also had a little strapless hot pink cheetah t-shirt material blouse I sleep with every night. I take it with me when I go to my brother’s for the weekend. I don’t know what I’d be like if I couldn’t ‘hug’ her in some way.”
“I tell her all day, every day, she is not alone, I’m always there loving her. I tell her what a smart, beautiful, innovative sweetheart of a daughter she is/was. And that I’m here, fighting for justice for her lovely self.”
Part of the problem for the co-victim, like Dru Ann, is feelings of isolation. Like the elephant in the middle of the room, people avoid bringing up the questions or details about the murder, as well as how one is coping, in fear that the co-victim will be further upset.
“No one ever asks me about her case, or how I am doing behind her murder. I know no one wants to talk about it, or Dez, so I keep it to myself.”
As a former grief counselor, I heard this countless times—how the parent, spouse, sibling, or loved one is already thinking about the one who has died; that bringing it up gives honor to the deceased. In essence, talking about the elephant in the middle of the room removes the stigma and isolation that the co-victim experiences.
What can help the ones who are left behind? Psychiatrists at Massachusetts General Hospital found that a combination of anti-anxiety and anti-depressant medications can help, as well as therapy tailored to address complicated grief.
The Association of Death Education and Counseling (ADEC) offer a list of counselors in one’s area with a specialty in thanatology (death, dying, and bereavement). Therapists with training in this area are more likely to have a deeper understanding of complicated grief, as well as how to proceed in therapy.
In my work with the bereaved by suicide, grief groups specific to sudden loss appear to help those in mourning more than a generalized grief group, specifically in the area of isolation, stigma, and disenfranchised feelings. Sudden loss groups now exist in a number of cities, and allow individuals to be candid with their experiences, memories, intrusive thoughts, and feelings. Often in non-specific grief groups, the survivor of suicide or co-victim of homicide can feel too unique, fearing that their stories are too explicit. Additionally, fellow grievers who have not been impacted this way are prone to minimize their own grief, or experienced secondary post-traumatic stress from the details of such a death.
Grief specialist, author, and speaker, Barbara Rubel, MA, FT, reports that survivors of homicide must also address practical, safety, and legal issues.
“As survivors of homicide, also known as co-victims, cope with their profound loss, they must navigate the criminal justice system and learn their rights. Co-victims need to learn about parallel justice, a fundamental component of justice, which attempts to keep them safe. They must identify their local victim assistance professionals (e.g. Victim Assistance Coordinators and Victim Advocates) who will guide them through the system during a time when grief can inhibit their ability to focus,” says Rubel.
“Co-victims need to understand their rights; learn how to create a victim impact statement, apply for victim compensation through a crime victims reparations program; review all written information given to them, clarify any misunderstandings, and clarify those things that do not make sense to them. I always recommend to co-victims that they document everything for restitution and seek out financial reimbursement for out-of-pocket expenses related to the homicide.”
For Dru Ann, bits of joy do shine into her life. Time spent with her surviving daughter, Taii, as well as other family members helps to lighten the darkness. She has become an avid bird watcher, where observing hawks, crows, and hummingbirds keep her going through each day. Writing about Desiree’s life and her death has offered clarity.
“I went to one Parents of Murdered Children shortly after Desiree’s death. I remember the meeting, but was definitely not fully there. No one in that club wants to be a member. I do remember them as being so welcoming and respectful of one another. They always remember Desiree on her birthday, and on her murderversary.”
“Biking to work and home every day gets a lot of emotion and anger out by using my energy. I also put a rose in a bud vase every week, and then save the leaves and scatter them at the bottom of Desiree’s photo.”
Pursing justice also keeps DruAnn going. “I will always be on the Oakland Police Department to solve her case.”
This is a story of a mother’s horror, her fight to find her daughter’s killer, and how she has coped with the intense grief of her daughter’s murder. This is also the story of spirit, strength, and courage. Dru Ann spent many hours speaking to me about Desiree, answering questions via email, and writing pages about her loss, and how she copes on a day-to-day basis. She is a strong survivor, and her words give witness to the human spirit. Our hope is that others affected by traumatic grief will feel less alone in reading her words.
“Maybe in the future I will be able to reach out and help other mothers who are in this horrible club.”
If you know someone who experiences complicated grief, whether by disaster, accident, suicide, or murder, you can help. There are no magic words, no quick fixes, no piece of advice you can give that will heal the wound. What you can do is listen. My life has changed in knowing Dru Ann, and I carry her, her family, and Desiree in my heart.
Below are a list of resources for those affected by traumatic grief.
Grief Speaks: a website devoted to those affected by murder and homicide.
ADEC: Association of Death Education and Counselors. Here you can find a list of therapists with special training in grief.
California Victim Assistance:
FBI Victim Assistance:
Research in complicated grief:
“Grandma’s house is the only place that we’d ever had Christmas. Her tree, hand cut by dad, was filled with hand-made ornaments from her grandchildren and old fashioned bulbs from the ’50′s. Grandma died of a heart attack in October. How can I possibly celebrate the holidays now that she’s gone?”
Grieving the loss of any family member, spouse or friend can be all-encompassing. Periods of great sadness, crying, loss of appetite, insomnia, and feelings of isolation are just a few of the symptoms of grief. Couple this with the cultural expectation that holidays are to be joyful, filled with family gatherings and parties, and revisiting long-standing traditions, and you can see why grief during the holidays can be particularly painful.
Triggers, which are sights, sounds, smells, even tastes that jog the memory, can set off emotional responses. When someone is grieving, triggers during the holidays range from songs played on the radio and in stores, to festive decorations, to the smells of roasting turkey or fresh latkes.
Ironically, avoiding, or the attempt at avoiding these triggers, can often cause one’s grief to intensify or become prolonged. Telling yourself that you are “supposed to feel joyful” during the holiday season is an unrealistic expectation that only complicates your grief. By adopting strategies to cope with grief during the holidays, you can learn how to gauge what is reasonable during this season and how to receive adequate support during this difficult time.
1. Practice Mindfulness. This is a very popular term that has stemmed from Buddhist thinking. Taking time out daily to sit, breathe deeply, allowing thoughts and feelings to come and go, and gently accept them actually accelerates healing. Practicing mindfulness, according to Sameet M Kumar PhD, author of Grieving Mindfully, “…is not to help you cover up the pain, but to help you be okay with yourself.”
2. Consider the old versus the new. As a bereaved individual, you have the opportunity to select which parties, traditions, church services, dinners, and events you wish to attend and which to decline. Just because something is a long-standing tradition doesn’t mean it is personally meaningful for you today. Consider a new tradition, such as serving at a soup kitchen or participating in a food drive for the hungry. Many bereaved clients I’ve worked with in past groups report how liberating it is to slow down and quiet themselves during the holidays as opposed to engaging in the frenetic pace associated with the season.
3. Just Say No and Yes. It’s no secret that Americans indulge in excessive eating and drinking over the holidays, resulting in not only five to ten pounds of weight gain, but depression. Saying no to excessive eating and alcohol to self-medicate will add a stabilizing force throughout your grief. Say yes to exercise. If you are able, spend daily time exercising, particularly in the outdoors. In the long run, allowing feelings to come without numbing them assists you in finding ways to cope with your loss rather than feeling stuck.
4. Get support. Supportive friends and family are ones who respect your choices and listen to your stories. If you don’t have that type of support system, find one! Often, local hospices, churches and hospitals conduct bereavement groups specifically designed for holiday support.
In the words of the poet Max Ehrmann, “…be gentle with yourself.” This is a time of remembrance, of holding on, and of letting go. Above all, grieving through the holidays demands loving, self care. Grief is not something that can or should be avoided. Accepting your feelings, exercising wise choices as well as the body, and utilizing support will help you cope with the impact of grief during this holiday season.read more
If you are a parent, think back to the moments your newborn entered the world: she strained to open her eyes. You were awestruck, delighted. If you are like most parents, a spouse, friend, or partner photographed each moment; every coo, each grin, movement, cry, swaddle. You witnessed a miracle and you have the photographs to show for it.
But what about those parents who looked into the eye of their child and recognized that something was wrong. Or…they
registered panic in the room. How about those parents who leave with the layette still packed, the cameras untouched, their grief their only novelty.
Should we have taken a picture? Would that would have been morbid? I wish we had had a photo…
These are all questions and thoughts that photographers from Now I Lay Me Down To Sleep (NILMDTS) have heard; the photographers who sensitively, carefully work with a special population: bereaved parents and their dying or deceased babies.
In 2006, Angela and Bob Kott resembled the classic, American, suburban family: Two children, Kendall and Lauren, one baby on the way; soccer on Saturdays; the county fair in the summer; a swimming hole to cool off ; barbecues in the back
yard. Although the birth of baby Trevor was uncomplicated, as the new parents got ready to leave the hospital, they spotted a rash on their newborn son. He never left the hospital except for brief visits home.
Trevor was diagnosed with terminal leukemia and needed a bone marrow transplant. His hometown held a bone marrow drive to attempt to find a match. Immediately, the Kott family was put in touch with a photographer from Now I
Lay Me Down to Sleep (NILMDTS), Brenda Bisharat, who would photograph Trevor for the his brief, six months of life.
NILMDTS meets an immediate need during a critical time for grieving parents by providing sensitive and private photography sessions. Founded in 2005 by Cheryl Haggard and Sandy Pic, the organization now has over 5,000 volunteers in the United States and is represented in nineteen international countries.
Angela and Bob made the intentional decision to photograph Trevor, incorporating him into their family life. NILMDTS states that their goal is to, “…help aid (families) in their healing, bring hope to their future, and honor their child.
It is through remembrance that a family can truly begin to heal.” The Kotts certainly embraced this, as was demonstrated in the way their living room was decorated with photos of their two daughters, as well as their baby, Trevor, throughout his progressing illness.
What NILMDTS volunteers have witnessed through their photography sessions and in follow up contacts is that the photographs memorialize a baby’s death and allow a continued connection with the child. The process of photo-documenting the baby’s death, as Bisharat states, facilitates a true bond even when that life has been cut short. Bereavement specialists, Klass & Silverman, observe that bereaved parents maintain an inner relationship with their deceased child as they adjust to their baby’s death. Therefore, having a photo can be a healing tool to locate or place the grief that a parent feels. There is a bond in place and family and friends must come to understand this to effectively offer support to bereaved parents who need to share their story. The story may be, “Let me show you a photo of my baby…she lived only an hour.” Mother of Trevor, Angela, put it best, “The pictures captured Trevor’s personality and our lives with him, helping us recall that he was very much a part of our family. He will forever be my sixth-month-old baby.” Hence, even as they grieve, bereaved parents are able to dream, talk , and experience feelings about their child through a continued inner relationship (Klass & Silverman.)
It is sad, but true, that some well-intended friends and family members offer platitudes such as, “You need to put this behind you,” Or, “You are, young, it’s best not to think about this too much.” And even, “At least you weren’t too attached.” Ours is a culture of “move on and move forward.” However, grief specialists, Corr, Nabe, and Corr, speak to the misguided assumption that there cannot be great grief in fetal deaths because there has not been real bonding with one’s infant. When we push aside a parent’s serious loss, minimizing the impact, then their grief is disenfranchised, and they are isolated and at risk for being misunderstood.
“The death of a child is a pivotal event and photo-documenting maximizes the ability to offer support to bereaved parents who are coping with the proverbial, ‘Elephant in the Middle of the Room,’” bereavement specialist, Barbara Rubel notes. “If a life narrative is punctuated by a baby’s death and that other life experiences come to be understood as having occurred before or after this pivotal event, then anyone supporting grieving parents needs to identify everything that occurred during and surrounding that event in order to maximize the effectiveness of support” (p,20).
One cannot underestimate the toll that losing a baby has upon a family. Although parental bereavement is something that some believe should be whispered about behind the blinds, families recognize the significance of their voice being heard and NILMDTS is listening. When a terminal diagnosis is given or a still born death delivered, the parents are faced with a multitude of medical decisions. NILMDTS is a gentle companion to grief, whereby that child is given the proper
attention in his or her family: recognition. Offering photographs to parents of their baby’s brief time in their lives eases the grief for parents as they continue the bond with their child. This special form of memorialization gives this baby a voice that gently whispers, “I am a part of your life. Thank you for remembering me, and loving me.”
Web site for Now I Lay Me Down to Sleep: www.nowilaymedowntosleep.org
*permission granted by Cheryl Haggard, co-founder of Now I Lay Me Down to Sleep to use quote and information from organization’s statistics and quote used in text.
*permission also granted by the Kott family and Brenda Bisharat
Photo by Brenda Bisharat Photography, www.bisharatphotos.com
It’s Monday morning. That phrase, alone, says enough. In the middle of the night your seven-year-old begins throwing up. Meeting you in the kitchen, with a slight glare and a stiff, sarcastic smile, are the words of your teen, “Thanks for having my uniform clean for the game today.” Ugh. Sigh. At 9:10, you stagger into your 9:00 meeting after finding a neighbor who promises to look in on your seven-year-old. In the back of your mind is the book you bought on how to effectively parent teens. As the meeting progresses, your mind drifts to your quick cell phone call to your mom this morning, assuring her that, “Yes, I’ll be there for the Dr. appointment to hear Dad’s prognosis.”
There are estimates that 25% of all Americans in El Dorado County, and even higher in urban areas, belong to what is termed the “Sandwich Generation.” Translation: you are caring for your children and one or more parents and feeling the squeeze in between. While tending to one’s family in not novel, living a vast distance from one’s siblings and parents is a phenomenon of the last sixty years that places additional strain. Add on top of this the delay of families having childrenwhen they are in their thirties and even forties due to economic stress, and it is understandable that the “nuclear family” can find itself wedged between the care of both children and parents.
It has only been in the last twenty-five years that psychologists and sociologists have given credence to a generation of individuals who feel their middle being smooshed out of the Oreo. When looking at what areas are impacted, there are four that stand out:
- Home: Being able to attend to the upkeep of one’s personal home, schedules, bills, and appointments while balancing that of the aging or sick parent. Little “down time” exists for the caregiver and home ceases to be a sanctuary.
- Finances: Caregivers may find that their budget is strained by taking time off of work, or, if necessary, leaving work entirely to balance care for children and aged parents. Additionally, advocating for a parent’s health issues can result in extensive paperwork, securing secondary medical coverage, and seeking out multiple health providers, which can necessitate leaving/taking time away from work, creating financial strain.
- Work: As stated earlier, caregivers may need to cut back or leave their job temporarily or permanently. Even the “working at home” caregiver will succumb to the strain of making space for this balance.
- Health & Well Being: “Feelings of guilt, depression, isolation, and lack of appreciation are common for caregivers who do not hear, ‘thank you,’ ” reports Linda Dean, from El Dorado County’s Family Caregiver Support Program. It is not uncommon to hear that caregiver’s ignore their own health needs and requirements for adequate nutrition, rest, and relaxation.
- Accept Help. Let me say that again, only this time, I want you to say it out loud to yourself: ‘I’LL ACCEPT HELP!’ When friends ask, “What can I do?” and you say, “Nothing,” over time they will stop asking and you may feel bitter or isolated. Let them help. Yes, you can pick up my items from the laundromat. Yes, you can take my children home on Thursdays. Yes, I would love it if you brought over a meal. Practice saying, ‘Yes!’
- Take breaks without guilt. When people worry excessively, therapists recommend scheduled worry times. This is along the same lines. Schedule some down time. Get a pedicure. Go for a walk outdoors. Have coffee with a friend. You cannot help if you are not filling up your empty vessel.
- Talk. Find someone who has been through this. Chances are he/she will have a warm shoulder and practical advice that is helpful. A caregiver support group may not be something you can squeeze into your already busy life, although it can be helpful. Online support such as AARP’s website, www.aarp.org/relationships/caregiving/, can offer you help from home.
- Get proper nutrition and exercise. Physician Dr. Mark Holthouse, of the Center for Functional and Integrative Medicine, www.cfim1.com, says, “Think of eating healthfully and exercising as putting some of your monthly paycheck in your 401-K.” You need your endorphins during this stressful time, and a brisk walk can clear your mind as well as benefit your body and stamina.