Whether it’s an exciting time, or a difficult time of the year, the holiday season is upon us. The holidays can give much joy and happiness, but they can also bring added responsibilities and feelings of grief. Because of the additional demands of the season, many family caregivers understandably experience an increase in stress this time of year.
For those caregivers looking for help and advice, FCA has articles on holiday caregiving topics including stress, family dynamics, and gratitude. Our new Caregiving Through the Holidays webinar is also available to view. New and seasoned caregivers can take advantage of FCA’s free online service FCA CareJourney. CareJourney provides quality information, support, and resources tailored to your individual situation.
On behalf of the staff, volunteers, and board of directors at FCA, I’d like to wish you all a peaceful and happy holidays.
Through Their Eyes The Role of Caregivers in Clinical Trial Participation
Friends, Family, and Loved Ones Can Serve a Vital Role in Supporting Trial Participants
Time and again we hear stories of the love, service, and sacrifice caregivers provide while supporting clinical trial participants through their journeys. From shuttling research volunteers back and forth to appointments, offering emotional support, and reminding participants to take medications or fill out diaries, caregivers are often among the unsung heroes of clinical research.
In the videos below you’ll meet three pairs of participants and caregivers, each with a unique story. We hope you find as much inspiration in their stories as we do.
Pamela & Brent’s Partnership
“You can do it alone, but it’s nice that you don’t have to.”
Meet Pamela and Brent. They’ve been married for 22 years. Pamela has Non-Small Cell Lung Cancer and is participating in an investigation clinical trial. Brent is her caregiver. In this video, we will hear from Pamela and Brent as they talk about dealing with the day to day challenges of Pamela’s diagnosis as a team, working together to create a new normal, and the benefits to participating in a clinical trial with a partner.
It’s easy to see why some seniors can fall into deep depression and decide life may not be worth living anymore. They may have lost a spouse, family members, children, friends or perhaps their mobility and health.
Sometimes depression may come softly, slowly stealing the seniors’ enthusiasm for life and isolating themselves from others while struggling alone with all sorts of depressive emotions.
New therapies have emerged that can help seniors deal with emotional issues that even they may not know they have. Talk therapy is one method of treatment that’s making amazing pathways to help seniors re-evaluate their present situation and find ways to deal with it.
How Talk Therapy for Seniors Works
Mental health social workers, psychiatrists and psychologists are become adept at helping seniors revamp their lives with the help of talk therapy. This type of therapy is designed to get the seniors to confront their negative thoughts and mood swings and develop new ones that can stave off bouts of depression that plague them in future years.
Some seniors that are dealing with depression today may be part of the generation that didn’t put much stock into therapy or counseling. They think of it as ‘spilling their guts’ to a person they don’t know and who doesn’t really know them. It’s embarrassing and a stigma that they want to avoid at all costs.
During a senior’s younger years, most have likely never entered a therapist’s office. Now, however, they’re recognizing that some of their problems might be easier to handle if they talk to a professional about ways to deal with them.
Since Medicare pays for therapy and psychiatric assessment, there’s no viable reason for a senior not to have an evaluation from a professional. Seniors are realizing that their time is more limited than it was and that they need to make the most of whatever years they have left.
Talk therapy is a good place to start when dealing with a senior’s depression and negative thoughts. If the patient is in full blown clinical depression, antidepressants may be in order – or some other type of lifestyle change such as diet and exercise.
Talking to someone neutral — especially a trained professional — about personal problems and fears can’t hurt and will likely give the senior a new perspective on life so they can become open to changes and new opportunities that present themselves in later years.
Claustrophobia is a form of anxiety disorder, in which an irrational fear of having no escape or being closed-in can lead to a panic attack.
It is considered a specific phobia according to the Diagnostic and Statistical Manual 5 (DSM-5).
Triggers may include being inside an elevator, a small room without any windows, or even being on an airplane.
Some people have reported that wearing tight-necked clothing can provoke feelings of claustrophobia.
Fast facts on claustrophobia:
Here are some key points about claustrophobia. More detail is in the main article.
Claustrophobia affects some people when they are in a small space.
It can lead to feelings of panic.
Causes may include conditioning and genetic factors.
A variety of tips and treatments may help people overcome their fear.
What is claustrophobia?
Claustrophobia is the fear of a closed-in place from which escape would be difficult or impossible.
The word claustrophobia comes from the Latin word claustrum which means “a closed-in place,” and the Greek word, phobos meaning “fear.”
People with claustrophobia will go to great lengths to avoid small spaces and situations that trigger their panic and anxiety.
They may avoid places like the subway and prefer to take the stairs rather than an elevator, even if many floors are involved.
Up to 5 percent of Americans may experience claustrophobia.
A psychologist or psychiatrist will ask the patient about their symptoms.
A diagnosis of claustrophobia may emerge during a consultation about another anxiety-related issue.
The psychologist will:
ask for a description of the symptoms and what triggers them
try to establish how severe the symptoms are
rule out other types of anxiety disorder
To establish some details, the doctor may use:
a claustrophobia questionnaire to help identify the cause of anxiety
a claustrophobia scale to help establish the levels of anxiety
For a specific phobia to be diagnosed, certain criteria need to be met.
a persistent unreasonable or excessive fear caused by the presence or anticipation of a specific situation
anxiety response when exposed to the stimulus, possibly a panic attack in adults, or, in children, a tantrum, clinging, crying or freezing
a recognition by adult patients that their fear is out of proportion to the perceived threat or danger
employing measures to avoid the feared object or situation, or a tendency to face the experiences but with distress or anxiety
the person’s reaction, anticipation or avoidance interferes with everyday life and relationships or causes significant distress
the phobia has persisted for some time, usually 6 months or longer
symptoms cannot be attributed to another mental condition, such as obsessive-compulsive disorder (OCD) or post-traumatic stress disorder (PTSD)
Claustrophobia is an anxiety disorder. Symptoms usually appear during childhood or adolescence.
Being in or thinking about being in a confined space can trigger fears of not being able to breathe properly, running out of oxygen, and distress at being restricted.
When anxiety levels reach a certain level, the person may start to experience: sweating and chills
accelerated heart rate and high blood pressure
dizziness, fainting, and lightheadedness
hyperventilation, or “over breathing”
shaking or trembling and a sense of “butterflies” in the stomach
a choking sensation
tightness in the chest, chest pain, and difficulty breathing
an urge to use the bathroom
confusion or disorientation
fear of harm or illness
It is not necessarily the small spaces that trigger the anxiety, but the fear of what can happen to the person if confined to that area.
This is why the person fears running out of oxygen.
Examples of small spaces that could trigger anxiety are: Claustrophobia trapped.
Claustrophobia can stem from a feeling of being trapped, and what could happen if they stayed confined to that area.
elevators or changing rooms in stores
tunnels, basements, or cellars
trains and subway trains
cars, especially those with central locking
some medical facilities, such as MRI scanners
small rooms, locked rooms, or rooms with windows that do not open
checking the exits and staying near them when entering a room
feeling anxious when all the doors are closed
staying near the door in a crowded party or gathering
avoiding driving or traveling as a passenger when traffic is likely to be congested
using the stairs instead of the elevator, even if this is difficult and uncomfortable
Claustrophobia involves a fear of being restricted or confined to one area, so, having to wait in line at a checkout may also cause it in some people.
Cognitive behavioral therapy
Cognitive behavioral therapy (CBT) can be used to reduce the frequency and potency of the fear reaction’s triggers.
Following a diagnosis, the psychologist may recommend one or more of the following treatment options.
Cognitive behavioral therapy (CBT): The aim is to retrain the patient’s mind so that they no longer feel threatened by the places they fear.
It may involve slowly exposing the patient to small spaces and helping them deal with their fear and anxiety.
Having to face the situation that causes the fear may deter people from seeking treatment.
Observing others: Seeing others interact with the source of fear may reassure the patient.
Drug therapy: Antidepressants and relaxants can help manage symptoms, but will not solve the underlying problem.
Relaxation and visualization exercises: Taking deep breaths, meditating and doing muscle-relaxing exercises can help deal with negative thoughts and anxiety.
Alternative or complementary medicine: Some supplements and natural products, for example, lavender oil or a “rescue remedy,” may help patients manage panic and anxiety.
Treatment often lasts around 10 weeks, with sessions twice a week. With appropriate treatment, it is possible to overcome claustrophobia.
Tips for coping
Strategies that can help people cope with claustrophobia include:
staying put if an attack happens. If driving, this may include pulling over to the side of the road and waiting till symptoms have passed.
Reminding yourself that the frightening thoughts and feelings will pass
trying to focus on something that is not threatening, for example, the time passing or other people
Breathing slowly and deeply, counting to three on each breath
challenging the fear by reminding yourself that it is not real
visualizing positive outcomes and images
Longer-term strategies may include joining a yoga class, working out an exercise program, or booking an aromatherapy massage, to help cope with stress.
In this video, Stella Lourency, Assistant Professor of Psychology at Emory University, explains that people with higher levels of claustrophobic fear tend to underestimate distances.
Past or childhood experience is often the trigger that causes a person to associate small spaces with a sense of panic or imminent danger.
Experiences that can have this effect may include:
being trapped or kept in a confined place, by accident or on purpose
being abused or bullied as a child
getting separated from parents or friends when in a crowded area
having a parent with claustrophobia
The trauma experienced at that time will affect the person’s ability to cope with a similar situation rationally in future. This is known as classic conditioning.
The person’s mind is believed to link the small space or confined area with the feeling of being in danger. The body then reacts accordingly, or in a way that seems logical.
Classic conditioning can also be inherited from parents or peers. If a parent, for example, has a fear of being close in, the child may observe their behavior and develop the same fears.
Possible genetic or physical factors
Other theories that may explain claustrophobia include:
Having a smaller amygdala: This is the part of the brain that controls how the body processes fear.
Genetic factors: A dormant evolutionary survival mechanism causes reactions that are no longer needed in today’s world.
Mouse studies have indicated that a single gene may cause some individuals to have a greater degree of “resident-intruder stress.”
One group of researchers has suggested that people who experience claustrophobia perceive things as being nearer than they are, and that this triggers a defense mechanism.
Senior Vice President of Oncology at Astellas Pharma
Tens of thousands of researchers, clinicians, and industry leaders descended upon Chicago for the annual meeting of the American Society of Clinical Oncology (ASCO), where breakthrough science and promising statistics in cancer care were on full display.
The Annual Report to the Nation on the Status of Cancer, published this spring by the Centers for Disease Control and Prevention, the American Cancer Society and other public and private-sector organizations, showed that mortality rates for the most common cancers in men and women, including lung, colorectal, female breast, and prostate, have continued to decline. With the exciting progress we’re seeing in immunotherapies, personalized medicine and other therapeutic areas, there is every reason to believe that meaningful progress will continue well into the future.
However, defeating cancer is about more than breakthroughs or statistics alone. In the midst of all the scientific excitement, we must not lose sight of the fact that a disease like cancer, even if treatments are ultimately successful, fundamentally changes the life of the person battling it.
Those of us who have devoted our careers to changing lives need to define “life” in a holistic way, beyond the cellular level. This begins with supporting ways to reduce the impact of cancer treatments on patients. At Astellas, our team is deeply encouraged by what we’ve seen, for example, in the use of virtual reality to help people better manage the high degrees of stress that accompany treatment. What’s more, the continuing proliferation of online and community-based support networks is increasingly helping to ensure that people fighting this disease never have to feel alone.
Even beyond that, though, we need to focus our ideas and energies on how we can help cancer patients regain the lives that the disease stole from them. We’re learning more about the benefits of helping people process the emotions they experience during diagnosis and treatment, establish post-treatment plans, and rebuild their confidence regarding career, education, finances, and relationships.
As a company and industry, one of the most important things we can do to help achieve this holistic approach to cancer care is put ourselves squarely in the shoes of those fighting the disease. Not too long ago, this hit close to home when my father was diagnosed with head and neck cancer and my perspective of our healthcare system completely changed. Although I had been working in the industry for more than 20 years, I found myself confused and frustrated when I was put into the caregiver role. As I attempted to navigate the system and coordinate the right care for my father, I was met with both discrepancies in treatment options and constant misunderstandings.
My experience as a caregiver reinforced my view that we must ask patients and their caregivers about their lives with the disease and how it has affected them on a daily basis. Only then can we truly understand the impact of the disease and help patients live fully after their diagnoses.
In 2015, Astellas co-developed a prospective patient registry for individuals with castration-resistant prostate cancer (CRPC). The program, Treatment Registry for Outcomes in CRPC Patients (TRUMPET), is designed to follow 1,200 patients for up to six years and evaluate each patient’s clinical and quality of life experience with the disease. With more than 600 CRPC patients already enrolled, TRUMPET helps us understand how these men manage CRPC, navigate the healthcare system, and make treatment decisions with family and caregivers. Importantly, it helps us shape future research and allows our company to make use of real world evidence with patient outcomes and quality of life in mind.
I’m both encouraged and excited that cancer is losing ground every day to our scientific progress. The major breakthroughs and the continual incremental successes are critically important. But I also believe that we, combined with other leaders across healthcare, have the obligation, will and the resources to achieve the most important victories – helping individuals regain the bright outlook they had before the day they received that life-altering diagnosis.
As we celebrate all the exciting research and advances shared at ASCO this week, let’s also be sure to keep this bigger picture in mind.
A new study by patient safety researchers shows common medical errors may be the third leading cause of death in the U.S., after heart disease and cancer. (Deirdra O’Regan/The Washington Post)
Nightmare stories of nurses giving potent drugs meant for one patient to another and surgeons removing the wrong body parts have dominated recent headlines about medical care. Lest you assume those cases are the exceptions, a new study by patient-safety researchers provides some context.
Their analysis, published in the BMJ on Tuesday, shows that “medical errors” in hospitals and other health-care facilities are incredibly common and may now be the third-leading cause of death in the United States — claiming 251,000 lives every year, more than respiratory disease, accidents, stroke and Alzheimer’s.
Martin Makary, a professor of surgery at the Johns Hopkins University School of Medicine who led the research, said in an interview that the category includes everything from bad doctors to more systemic issues such as communication breakdowns when patients are handed off from one department to another.
“It boils down to people dying from the care that they receive rather than the disease for which they are seeking care,” Makary said.
The issue of patient safety has been a hot topic in recent years, but it wasn’t always that way. In 1999, an Institute of Medicine report calling preventable medical errors an “epidemic” shocked the medical establishment and led to significant debate about what could be done.
The IOM, based on one study, estimated deaths because of medical errors as high as 98,000 a year. Makary’s research involves a more comprehensive analysis of four large studies, including ones by the Health and Human Services Department’s Office of the Inspector General and the Agency for Healthcare Research and Quality that took place between 2000 to 2008. His calculation of 251,000 deaths equates to nearly 700 deaths a day — about 9.5 percent of all deaths annually in the United States.
Makary said he and co-author Michael Daniel, also from Johns Hopkins, conducted the analysis to shed more light on a problem that many hospitals and health-care facilities try to avoid talking about.
Although all providers extol patient safety and highlight the various safety committees and protocols they have in place, few provide the public with specifics on actual cases of harm due to mistakes. Moreover, the Centers for Disease Control and Prevention doesn’t require reporting of errors in the data it collects about deaths through billing codes, making it hard to see what’s going on at the national level.
The CDC should update its vital statistics reporting requirements so that physicians must report whether there was any error that led to a preventable death, Makary said.
“We all know how common it is,” he said. “We also know how infrequently it’s openly discussed.”
Kenneth Sands, who directs health-care quality at Beth Israel Deaconess Medical Center, an affiliate of Harvard Medical School, said that the surprising thing about medical errors is the limited change that has taken place since the IOM report came out. Only hospital-acquired infections have shown improvement. “The overall numbers haven’t changed, and that’s discouraging and alarming,” he said.
Sands, who was not involved in the study published in the BMJ, formerly known as the British Medical Journal, said that one of the main barriers is the tremendous diversity and complexity in the way health care is delivered.
Consumer Reports recently investigated California licensing records and found that many doctors who were still practicing were on probation for serious violations of patient safety.
“There has just been a higher degree of tolerance for variability in practice than you would see in other industries,” he explained. When passengers get on a plane, there’s a standard way attendants move around, talk to them and prepare them for flight, Sands said, yet such standardization isn’t seen at hospitals. That makes it tricky to figure out where errors are occurring and how to fix them. The government should work with institutions to try to find ways improve on this situation, he said.
Makary also used an airplane analogy in describing how he thinks hospitals should approach errors, referencing what the Federal Aviation Administration does in its accident investigations.
“Measuring the problem is the absolute first step,” he said. “Hospitals are currently investigating deaths where medical error could have been a cause, but they are underresourced. What we need to do is study patterns nationally.”
He said that in the aviation community every pilot in the world learns from investigations and that the results are disseminated widely.
CONTENT FROM THE CLEVELAND CLINIC
Why empathy matters in healthcare
More hospitals are putting patient comfort and wellbeing at the forefront of their operations—from staff hires to building design to team structure.
“When a plane crashes, we don’t say this is confidential proprietary information the airline company owns. We consider this part of public safety. Hospitals should be held to the same standards,” Makary said.
Frederick van Pelt, a doctor who works for the Chartis Group, a health-care consultancy, said another element of harm that is often overlooked is the number of severe patient injuries resulting from medical error.
“Some estimates would put this number at 40 times the death rate,” van Pelt said. “Again, this gets buried in the daily exposure that care providers have around patients who are suffering or in pain that is to be expected following procedures.”
Lean on us when heartbreak and healing go hand in hand.
About Alive Hospice Nashville TN.
Ashley’s Voice Outreach Group
Would you like to ask questions about Hospice – Ashley’s Voice Outreach – 615-673-2221
Alive Hospice is a nonprofit organization that provides compassionate end-of-life care, palliative care, bereavement support and community education. Founded in Middle Tennessee in 1975, Alive Hospice is accredited by The Joint Commission and has held its Gold Seal of Approval for many years. It is also accredited by the National Institute for Jewish Hospices.
Alive Hospice entered the Middle Tennessee landscape in November 1975, only one year after the founding of the first hospice program in the United States. At the time, and through grassroots movements, other hospices also began appearing across the country. Like the group of individuals gathered together by Alive Hospice’s founders, Dr. David Barton and the late Dr. John Flexner, what unified those movements was compassionate people committed to helping patients live in comfort until death occurred and families to grieve with support.
Alive Hospice was chartered in 1975 as a nonprofit organization dedicated with three core goals: providing comprehensive care for terminally ill patients and their families; offering support for grieving adults and children; and serving the community as a center for research and education.
Today, Alive Hospice serves more than 3,600 patients and their families annually (more than 430 daily) and provides grief support services for nearly 600 adults and children in Middle Tennessee in addition to training for tomorrow’s caregivers and education for the community at large.
We provide loving care to people with life-threatening illnesses, support to their families
and service to the community in a spirit of enriching lives.
To be recognized as expert providers of hospice care, palliative care, management of
advanced disease and grief support and to be the agency of choice for the provision of
To be recognized as innovators and leaders in all aspects of end-of-life resources.
To influence the perceptions within the community and among medical professionals so
that the end of life is accepted as a meaningful component of the human experience.
We believe death to be a natural part of life’s journey.
We believe in honesty and integrity in all we say and do.
We believe in compassion to those we serve and to each other.
We believe in respect and dignity for all.
We value competent knowledgeable staff motivated to achieve personal and
We believe in accountability to society, our community and each other.
We believe in responsible stewardship of the resources with which we have been entrusted.
We believe in the continuous pursuit of organizational excellence.
We believe in teamwork to achieve our vision and mission, and to support our values.
Statement of Inclusiveness
As the only not-for-profit, community-based hospice in Middle Tennessee, Alive Hospice never turns anyone away, regardless of ability to pay, insurance status, race, religion, creed, color, sex, age, national origin, veteran status, sexual orientation, or disability. We live our mission to provide loving care to people with life-threatening illnesses, support to their families, and service to the community in a spirit of enriching lives.
You may have heard this one, but I find that it doesn’t hurt to be reminded of it every once in a while. First let me tell you the story, and then we can talk about it.
Once upon a time, there was an old man who used to go to the ocean to do his writing. He had a habit of walking on the beach every morning before he began his work. Early one morning, he was walking along the shore after a big storm had passed and found the vast beach littered with starfish as far as the eye could see, stretching in both directions.
Off in the distance, the old man noticed a small boy approaching. As the boy walked, he paused every so often and as he grew closer, the man could see that he was occasionally bending down to pick up an object and throw it into the sea. The boy came closer still and the man called out, “Good morning! May I ask what it is that you are doing?”
The young boy paused, looked up, and replied “Throwing starfish into the ocean. The tide has washed them up onto the beach and they can’t return to the sea by themselves,” the youth replied. “When the sun gets high, they will die, unless I throw them back into the water.”
The old man replied, “But there must be tens of thousands of starfish on this beach. I’m afraid you won’t really be able to make much of a difference.”
The boy bent down, picked up yet another starfish and threw it as far as he could into the ocean. Then he turned, smiled and said, “It made a difference to that one!”
adapted from The Star Thrower, by Loren Eiseley (1907 – 1977)
We all have the opportunity to help create positive change, but if you’re like me, you sometimes find yourself thinking, “I’m already really busy, and how much of a difference can I really make?” I think this is especially true when we’re talking about addressing massive social problems like tackling world hunger or finding a cure for cancer, but it pops up all of the time in our everyday lives, as well. So when I catch myself thinking that way, it helps to remember this story. You might not be able to change the entire world, but at least you can change a small part of it, for someone.
They say that one of the most common reasons we procrastinate is because we see the challenge before us as overwhelming, and that a good way to counter that is to break the big challenge down into smaller pieces and then take those one at a time–like one starfish at a time. And to that one starfish, it can make a world of difference.
“A single, ordinary person still can make a difference – and single, ordinary people are doing precisely that every day.”
— Chris Bohjalian, Vermont-based author and speaker
Guilt is perhaps the most painful companion of death. ~ Coco Chanel
Guilt is a normal response to the perception that we’ve somehow failed in our duties and obligations or that we’ve done something wrong. It generates a jumbled mixture of feelings including doubt, shame, inadequacy, insecurity, failure, unworthiness, self judgment and blame, anxiety and fear of punishment.
When your loved one’s terminal illness was finally diagnosed, as a caregiver you may feel guilty that you hadn’t noticed symptoms sooner, waited too long to seek treatment or didn’t do enough to comfort your beloved. If death came suddenly or unexpectedly, you may feel guilty for not being present when it happened. If it came after a long, lingering illness, you may feel guilty for feeling relieved that your loved one’s suffering is over and you’re now free from the burden of worry and care. You may feel guilty that you are the one who survived, or uncomfortable that you received an insurance settlement or inheritance following the death of your loved one. If you’re a religious person, you may feel guilty that you feel so angry at God.
Unfortunately, guilt is a natural and common component of grief. When someone you love dies, it’s only human to search for an explanation, to look at what you did or did not do, to dwell on the what if’s and if only’s. You agonize and tell yourself, “If only I’d done something differently, this never would’ve happened.” Sometimes, though, there simply isn’t anything you could have done differently. When your loved one’s illness or death occurred, chances are that whatever happened beforehand was not intentional on your part. In the wise words of internationally known author and publisher Louise Hay, we do the best we can with our understanding at the time, and when we know better, we do better. Given the stress you were under at the time and how exhausted you may have been, you were doing the best you could. You were basing whatever you did on what you knew, given the information available to you then.
Harsh as it may seem, consider that even if you had done things differently, your loved one still could have died in some other way at some other time! Sometimes we act as if we can control the random hazards of existence, even when we know that death is a fact of life.
Guilt is driven by our own personal beliefs and expectations, and dealing with it requires that we examine what we think we did wrong, face it and evaluate it as objectively as possible. For example, what did you expect of yourself that you did not live up to? Were your expectations unrealistic? If they were, then you need to let go of them. Since you did all that you were capable of doing at the time, there simply is no basis for your guilt, and you need to let go of that as well.
Nevertheless, if after careful examination of the facts, you find that your expectations of yourself are legitimate and you still did not live up to them, it’s important to face and take responsibility for what you believe you could have done differently. Healthy guilt allows us to own up to and learn from our mistakes. It gives us a chance to make amends, to do things differently next time, to come to a better understanding of ourselves, to forgive ourselves and move on.
Tips for Coping with Guilt
∙ Identify what it is that you feel guilty about. Resist the urge to keep such thoughts and feelings to yourself like so many deep, dark secrets. Bring them out into the open where they can be examined. Share them with a trusted friend or counselor, who can view your thoughts and feelings more objectively, and challenge what may be irrational or illogical.
∙ Listen to the messages you give yourself (the should haves, could haves and if only’s), and realize the past is something you can do absolutely nothing about.
∙ When guilty thoughts come to mind, disrupt them by telling yourself to stop thinking such thoughts. Say “STOP!” firmly, and out loud if you need to.
∙ Live the next day or next week of your life as if you were guilt-free, knowing you can return to your guilt feelings any time you wish. Pick a start time, and stop yourself whenever you make any guilt-related statements.
∙ Write down your guilt-related statements, set a date, and pledge that from that day forward, you won’t say them to yourself anymore. Post them and read them every day.
∙ If you are troubled by feeling relieved that your loved one’s suffering has ended, know that a heavy burden has been lifted from your shoulders; you have been released from an emotionally exhausting and physically draining experience, and to feel relieved is certainly understandable.
∙ If you believe in God or a higher power, consider what He or She has to say about forgiveness.
∙ Participate in a support group — it’s a powerful way to obtain forgiveness and absolution from others.
– Be your own best friend. What would you have said to your best friend if this had happened to that person? Can you say the same to yourself? ∙ Remember the good things you did in your relationship with your loved oneand all the loving care you gave. Focus on the positive aspects: what you learned from each other, what you did together that brought you joy, laughter and excitement. Write those things down, hold onto them and read them whenever you need to.
∙ Ask what you expected of yourself that you didn’t live up to. How is it that you didn’t? What were the circumstances at the time? What have you learned from this that you’ll do differently next time?
∙ What can you do to make amends? Find a way to genuinely apologize to your loved one’s spirit and ask for forgiveness.
∙ Have a visit with your loved one. Say aloud or in your mind whatever you didn’t get to say while your loved one was still living. Be as honest as you can be.
∙ Have your loved one write a letter to you. What would this person say to you about the guilt and sadness you’ve been carrying around?
∙ Ask what it would take for you to forgive yourself. Can you begin doing it? Say out loud to yourself, “I forgive you.” Say it several times a day.
∙ Remember that no one else can absolve your feelings of guilt—only you can do so, through the process of intentionally forgiving yourself.
∙ When you’ve consciously learned all you can learn from this situation, and when you’ve made any amends you consider necessary, then it’s time to let go of your guilt, to forgive yourself, and to move on.
∙ Channel the energy of your guilt into a worthwhile project. Do good deeds in your loved one’s honor.
It was the most honorable and fulfilling thing I’ve ever done. It also was the absolute hardest thing I’ve ever done.
My best friend and bandmate, Brian was diagnosed with esophageal cancer in June ’11. He’d had difficulty swallowing for 18 months or so and it was progressively getting worse. The tumor was near the top of his esophagus and at the time of discovery blocked about 75% of the passageway. It was deemed too large to surgically remove initially and radiation and chemotherapy were ordered to shrink it then we’d talk about surgery. First thing done was to put in the chemo port on his chest on the left side and a feeding tube through his abdomen since swallowing was so difficult. These two procedures were done at the same time. One night in the hospital and that was it.
Brian had no family here and was adamant they not be notified. He felt they had their own lives to live and didn’t have time/couldn’t afford to take the time off to come help and I said “I can handle it”..
Radiation was daily Monday thru Friday (except holidays) for 5 weeks. Each radiation treatment lasted about 45 minutes. Chemo was every three weeks and it took upwards of 6 hours per treatment. Chemo was set up first on a Thursday and Radiation started the following Monday. The first course of these two treatments was to last 6 weeks – radiation for 5 weeks and three chemo drips. Then he’d get a month off to recoup.. I went with Brian to the first session of each then the following treatments and the rest of this course, he drove himself there and back. On chemo days I’d go over and stay with his dog but otherwise I’d call or pop over in the afternoon each day to check on him. The chemo started kicking his ass the Saturday after his 2nd drip. Nausea, the squirts, fatigue, no appetite.. It would last til Tuesday or Wednesday then he’d feel pretty ok for two weeks.. The radiation didn’t seem to affect him adversely until that first “off” period. Hair said bye bye, fatigue became a monster and his throat was on fire..
After that 3rd round of chemo and 5 weeks of radiation he was on treatment vacation. A week into that it became apparent I was needed full time so I packed up some clothes and toothbrush and moved in.. He was miserable. Needed help getting out of bed, getting to the bathroom.. He came to detest “eating” Ensure thru a tube into his stomach.. By this time a few close friends realized something was up but they were sworn to secrecy.. One of those in particular stepped up often to spell me for an afternoon and give Brian someone else to talk to, too..
It was wearing me down.. I can see that now, but I couldn’t then.. I was too focused on Brian. Sorting medical bills and insurance claims and managing medication (there was a LOT) and trying to get him to smile and feel better. I had tunnel vision.
That month was good for Brian. He felt pretty tolerable the last three weeks or so and his spirits was up..
After that “off” period of 4 weeks xrays were taken, measurements done. The tumor was shrinking as it was hoped but still too large for surgery. So, round two was ordered. Same radiation schedule and same Chemo schedule but with different chemicals.. The 1st chemo drip laid him out. Energy immediately sapped and he wasn’t able to drive himself now.. This round of treatment was identical to the first except I was driving and he had few if any “good” days.
Now it is November and round two is done. There was a little more shrinkage of the tumor but still not enough. To remove it and be sure they didn’t miss anything his voice box, part of his trachea and the flapper thing that closes off the trachea to keep liquids and food from entering the lungs would have to be removed. The risk of aspirating something into the lungs was high to say the least. Pneumonia would set in and in his condition he couldn’t fight it, it was thought.. Two surgeons from Vanderbilt Hospital as well as one from the Mayo clinic were consulted. All advised against surgery. As a matter of fact, two said they simply wouldn’t do it. So, back to oncology we go and we’re told they threw the best stuff they had at it in round two and asked if Brian would like to participate in a trial. It looked promising and, given, it was do the trial or do nothing but wait, Brian elected the trial. It was after the first of the year before that started – talk about paperwork JEEZ… More xrays and measurements done to establish the baseline for his part of the trial. The tests revealed the cancer had spread to his liver, lungs and bones.
This trial round would have no radiation component. It was chemo only and was scheduled for every two weeks. He started the second week of Jan and he rallied! It was amazing! He felt good.. Well, not good like you and I know but good for someone fighting cancer.. It was short lived though and when that feeling began to fade it faded fast! Plummeted is a better word. He was in a wheelchair by the 1st of Feb. On his 4th treatment of the trial chemo – mid March – he was too weak. The trial was ended. That was a Thursday. Appointment set with main oncologist for the following Thursday..
Brian’s brothers had been emailing and calling and at first he’d write back saying all was well and he phone was buggy that was why he wasn’t answering.. The Monday of the week we were to see the Oncologist one of his brothers wrote to me.. I could keep the secret a secret no longer. I spilled all the beans. Brian was dying right before my eyes. He was sleeping 18 hrs a day now. His brother arrived at 9 pm that Wednesday and Brian was already in bed. I hadn’t told him I’d told his brother who was sleeping in the next room.. That Thursday morning I woke Brian as usual and as I was helping him up to the chair to the pot and to get dressed for the doc appt, I told him that Tommy was there.. He smiled and said “thank you”. He saw my relief cuz I guess it was obvious.. He was happy to see his brother and I think it lifted his spirits..
When we saw the Doc he was shocked at how far Brian had slid.. Hospice was ordered. They came Friday.. Another brother arrived Saturday. And another Sunday. I stayed. I was happy to have the help and and was so very protective of Brian at the same time, I think I pissed off a couple of the brothers.. Sunday March 19th 2011 was an unusually warm day and we were all outside on the screened in porch, Brian included.. Was was not able to talk above a whisper but he talked and the brothers bonded.. It was beautiful.. About 5 pm we went back in and Brian settled into his favorite chair and dozed off.. He didn’t wake up again.. About 7pm, while Tommy & I was in the room watching tv, we heard Brian say, “home? This is home?” Tommy and I both said, “yeah, this is home” and he said “ahhh ok…” and kinda smiled.. at 12:02am March 20th, he took a big inhale of a breath. Head went back, eyes opened a bit and there was no visible or audible exhale and he was gone.. I think he left his body at 7 when he asked “this is home?” and his body lived on another 5 hours..
I had no idea of the effect it would have on me and I still don’t think it’s done… I had 3 months to process the last 9 months of Brian’s life, which passed like a blur, when my Mom was diagnosed with the big C.. She lived 6 months before dying at home. The treatment for her was chemo only. I had plenty of help with Mom. I, having just gone thru it, was considered the expert.
My Dad and Sister were the primary caregivers for Mom and I found myself looking after them more than anything.. Caregivers need care too.. I’ll say that again, caregivers need care too.. I wish I had some advise on how to prepare for that role in life. I could say “ be sure to take time for yourself too” but I know from experience, I could not take my own advise. Nothing else in my life mattered. I was laser focused on taking as much stress off those going through the horrors of cancer treatment as I could. Nothing else mattered.