I have entered a state of mind where I have come to hate in all capital letters this frigging disease. I hate seeing how my body slowly deteriorates. I hate looking back at what I used to be able to do and now cannot.
This is a different feeling for me. I had been so tranquil and accepting of the disease. And, in a way, I still am at peace with the knowledge that I am going to live a shorter lifespan than most folks, but I am not at peace with the experience of dying piecemeal. This slow dying process is frustrating and depressing.
Yes, I am overjoyed I can still drive and walk short distances without too much pain or danger of falling. I can still dive with a lot more assistance from other people helping me. It took two men to get me to step on and off the boat. And, despite the type of diving that was chosen by others, I still was measurably more comfortable in the water and was able to really experience the freedom of movement underwater.
Flying was horrible, or, at least, the airport waits were horrible. We live only 2 hours from Utila by plane if we could fly straight from Tampa, but it took us 17 hours to get home. We got up at 4 AM in Utila and arrived home at midnight, exhausted and spent.
I look back at what I could do last year, or even a few months ago, and am struck at what has been lost. Still, I am so very blessed that my disease is progressing slowly. It gives me and my husband time to prepare for what is to come. When I think of those who go from walking to bedridden in only a few months, I know I am so very, very lucky. Not only that, I feel fortunate that I have this disease instead of other, much worse scenarios. Life is much worse for the majority of the world’s population that I feel guilty in even complaining about my own condition, but I am only human.
I hope I have not disappointed any of my followers with my mood of the month, but I feel I must be honest in my humanity. I really do hate this frigging disease.
Wednesday, April 28, 2010
Back from Utila
We went to Utila again last week. The flight over was brutal and left me drained, confused, and I had trouble with balance and speech. It was what we thought was an endurance trial of 14 hours of airports and planes, despite upgrading to Business Class.
On Sunday, our first true day at Utila Lodge, I prepared to go diving and realized at once that I was not the person I had been last year. I was unable to accomplish climbing the ladder without great pain and loss of breath followed by generalized muscle weakness. I completed the first dive but was so fatigued that I slept through the second one. On that first dive, however, I saw the tiniest lobster I have ever seen; a baby of about half an inch long. I found it quite by accident when I stuck my fingers in front of a small hole in a coral mound so I could have cleaner shrimp climb on my hand to clean me. Instead, I felt a wee bite on my little finger and looked in more closely to see the baby lobster try to taste me for lunch. A wonderful experience.
I am what I call a sand diver. I like to find a nice sand hole in among the coral heads and search for tiny critters to watch and intently study their behavior. Unfortunately, the other 10 divers on the boat liked a different type of diving so I had only a few that allowed me to rest quietly in the sand. As a result, my two alternating dive-buddy divemasters had to do some towing in order for me to follow the group across the coral reefs. My husband took over the duty of keeping me safe and towing me on the last dive day on Thursday. I did see a very large spotted eagle ray swim by in the deep, a young hawksbill turtle, and an enormous green moray eel so the reef dives were certainly not without excitement.
Because of this type of diving, I saw very few little creatures and was unable to fully experience my dives. Being underwater again, however, was wonderful as always. To float effortlessly with no gravity pulling me down, no pain from aching joints, is rejuvenating for me. I guess my buddies did not find it so effortless, but being underwater still beats standing on dry land any day of the week.
On Sunday, our first true day at Utila Lodge, I prepared to go diving and realized at once that I was not the person I had been last year. I was unable to accomplish climbing the ladder without great pain and loss of breath followed by generalized muscle weakness. I completed the first dive but was so fatigued that I slept through the second one. On that first dive, however, I saw the tiniest lobster I have ever seen; a baby of about half an inch long. I found it quite by accident when I stuck my fingers in front of a small hole in a coral mound so I could have cleaner shrimp climb on my hand to clean me. Instead, I felt a wee bite on my little finger and looked in more closely to see the baby lobster try to taste me for lunch. A wonderful experience.
I am what I call a sand diver. I like to find a nice sand hole in among the coral heads and search for tiny critters to watch and intently study their behavior. Unfortunately, the other 10 divers on the boat liked a different type of diving so I had only a few that allowed me to rest quietly in the sand. As a result, my two alternating dive-buddy divemasters had to do some towing in order for me to follow the group across the coral reefs. My husband took over the duty of keeping me safe and towing me on the last dive day on Thursday. I did see a very large spotted eagle ray swim by in the deep, a young hawksbill turtle, and an enormous green moray eel so the reef dives were certainly not without excitement.
Because of this type of diving, I saw very few little creatures and was unable to fully experience my dives. Being underwater again, however, was wonderful as always. To float effortlessly with no gravity pulling me down, no pain from aching joints, is rejuvenating for me. I guess my buddies did not find it so effortless, but being underwater still beats standing on dry land any day of the week.
Saturday, April 10, 2010
COPING WITH LOSS
Here are some suggested ways for coping with the everyday feelings and realities that occur during the time of loss, grief and bereavement.
• Be gentle with your own feeling process. Avoid self-judgment. Do not say “I should have”.
• Find a supportive person or persons you can trust. Share your honest feelings. Give yourself time for healing. The timing of grief cannot be rushed. Plan your time so that you have specific time to focus on your loss and special time to escape from the pain of the reality of what you are facing.
• When you experience fear, anger, helplessness, sorrow, pain, emptiness, isolation, depression, and relief - it can be very confusing. Questions to ask yourself which help you to focus are: How do I feel right now? (Check body sensations, thoughts and emotions); What do I need right now? (Focus on immediate, attainable needs) How can I meet (or get a supportive friend to help me meet) these needs right now?
• Try to maintain as regular a schedule as possible. Avoid unrealistic expectations/goals for yourself.
• Maintain an awareness of your body’s need for nutrition and rest. If symptoms arise that are new or unusual, see your physician.
• Listening to your body is critical during this period of time. Listening is different than doing something for your body. Listening means to honor the messages your body is sending you. Words or tears that are unexpressed can cause a lump in our throats. Anger that is held inside can give us an upset stomach, headache, or tight neck and shoulders. Wringing hands, shakiness or queasy stomach can express fear. Guilt or resentment can feel like physical burdens we are carrying (I feel like I weigh a ton). Sorrow or depression can feel like pressure or breaking in our heart or chest area. Breathing may be labored or we may breath great sighs. Often a combination of these feelings is felt. It can be helpful to ask the part of the body that feels these sensations the following questions: If you could talk, what would you say? What picture or symbol best expresses you right now? What do you look like? What is happening right now?
• Writing a letter or drawing a picture of your loss or grief can be a healing way to get your feelings from the inside to the outside. Writing to others whom you feel incomplete with, or writing a letter to yourself, or to an institution, physician, hospital, or even to God, enables you to process what your body longs to say. It also enables you to release anger, frustration, and isolation and move to a forgiving, life-affirming love for yourself and those who have touched your life.
From The Life Center of the Suncoast, Inc. www.lifecentertampa.org
• Be gentle with your own feeling process. Avoid self-judgment. Do not say “I should have”.
• Find a supportive person or persons you can trust. Share your honest feelings. Give yourself time for healing. The timing of grief cannot be rushed. Plan your time so that you have specific time to focus on your loss and special time to escape from the pain of the reality of what you are facing.
• When you experience fear, anger, helplessness, sorrow, pain, emptiness, isolation, depression, and relief - it can be very confusing. Questions to ask yourself which help you to focus are: How do I feel right now? (Check body sensations, thoughts and emotions); What do I need right now? (Focus on immediate, attainable needs) How can I meet (or get a supportive friend to help me meet) these needs right now?
• Try to maintain as regular a schedule as possible. Avoid unrealistic expectations/goals for yourself.
• Maintain an awareness of your body’s need for nutrition and rest. If symptoms arise that are new or unusual, see your physician.
• Listening to your body is critical during this period of time. Listening is different than doing something for your body. Listening means to honor the messages your body is sending you. Words or tears that are unexpressed can cause a lump in our throats. Anger that is held inside can give us an upset stomach, headache, or tight neck and shoulders. Wringing hands, shakiness or queasy stomach can express fear. Guilt or resentment can feel like physical burdens we are carrying (I feel like I weigh a ton). Sorrow or depression can feel like pressure or breaking in our heart or chest area. Breathing may be labored or we may breath great sighs. Often a combination of these feelings is felt. It can be helpful to ask the part of the body that feels these sensations the following questions: If you could talk, what would you say? What picture or symbol best expresses you right now? What do you look like? What is happening right now?
• Writing a letter or drawing a picture of your loss or grief can be a healing way to get your feelings from the inside to the outside. Writing to others whom you feel incomplete with, or writing a letter to yourself, or to an institution, physician, hospital, or even to God, enables you to process what your body longs to say. It also enables you to release anger, frustration, and isolation and move to a forgiving, life-affirming love for yourself and those who have touched your life.
From The Life Center of the Suncoast, Inc. www.lifecentertampa.org
How to Deal with Grief
What is grief?
Grief is the normal response of sorrow, emotion, and confusion that comes from losing someone or something important to you. It is a natural part of life. Grief is a typical reaction to death, divorce, job loss, a move away from family and friends, or loss of good health due to illness.
How does grief feel?
Just after the death or loss, you may feel empty and number, as if you are in shock. You may notice physical changes such as trembling, nausea, trouble breathing, muscle weakness, dry mouth, or trouble sleeping and eating.
You may become angry – at a situation, a particular person, or just angry in general. Almost everyone in grief also experiences guilt. Guilt is often expressed as “I could have, I should have, and I wish I would have” statements.
People in grief may have strange dreams or nightmares, be absent-minded, withdraw socially, or lack the desire to return to work. While these feelings and behaviors are normal during grief, they will pass.
How long does grief last?
Grief lasts as long as it takes you to accept and learn to live with your loss. For some people, grief lasts a few months. For others, grieving may take years.
The length of time spent grieving is different for each person. There are many reasons for the differences, including personality, health, coping style, culture, family background, and life experiences. The time spent grieving also depend on your relationship with the person lost and how prepared you were for the loss.
How will I know when I am done grieving?
Every person who experiences a death or other loss must complete a four-step grieving process.
The grieving process is over only when a person completes these four steps:
1. Accept the loss
2. Work through and feel the physical and emotional pain of grief
3. Adjust to living in a world without the person or item lost
4. Move on with life
How does grief differ from depression?
Depression is more than a feeling of grief after losing someone or something you love. Clinical depression is a whole body disorder. It can take over the way you think and feel.
Symptoms of depression include:
o A sad, anxious, or “empty” mood that won’t go away
o Loss of interest in what you used to enjoy
o Low energy, fatigue, feeling “slowed down”
o Changes in sleep patterns
o Loss of appetite, weight loss, or weight gain.
From the Life Center of the Suncoast, Inc., www.lifecentertampa.org
Grief is the normal response of sorrow, emotion, and confusion that comes from losing someone or something important to you. It is a natural part of life. Grief is a typical reaction to death, divorce, job loss, a move away from family and friends, or loss of good health due to illness.
How does grief feel?
Just after the death or loss, you may feel empty and number, as if you are in shock. You may notice physical changes such as trembling, nausea, trouble breathing, muscle weakness, dry mouth, or trouble sleeping and eating.
You may become angry – at a situation, a particular person, or just angry in general. Almost everyone in grief also experiences guilt. Guilt is often expressed as “I could have, I should have, and I wish I would have” statements.
People in grief may have strange dreams or nightmares, be absent-minded, withdraw socially, or lack the desire to return to work. While these feelings and behaviors are normal during grief, they will pass.
How long does grief last?
Grief lasts as long as it takes you to accept and learn to live with your loss. For some people, grief lasts a few months. For others, grieving may take years.
The length of time spent grieving is different for each person. There are many reasons for the differences, including personality, health, coping style, culture, family background, and life experiences. The time spent grieving also depend on your relationship with the person lost and how prepared you were for the loss.
How will I know when I am done grieving?
Every person who experiences a death or other loss must complete a four-step grieving process.
The grieving process is over only when a person completes these four steps:
1. Accept the loss
2. Work through and feel the physical and emotional pain of grief
3. Adjust to living in a world without the person or item lost
4. Move on with life
How does grief differ from depression?
Depression is more than a feeling of grief after losing someone or something you love. Clinical depression is a whole body disorder. It can take over the way you think and feel.
Symptoms of depression include:
o A sad, anxious, or “empty” mood that won’t go away
o Loss of interest in what you used to enjoy
o Low energy, fatigue, feeling “slowed down”
o Changes in sleep patterns
o Loss of appetite, weight loss, or weight gain.
From the Life Center of the Suncoast, Inc., www.lifecentertampa.org
Grief a normal response to loss
From the Life Center of the Suncoast, Inc., www.lifecentertampa.org
Grief is a normal response to the loss of a loved one. Reactions from grief can affect the whole person. These reactions may include physical, emotional, psychological and behavioral changes. The most important thing for you to remember is that these reactions are a normal response to loss. You may experience none, some, or all of the following:
Physical Psychological
o Weakness
o Tightness in the chest
o Loss of energy
o Loss of sexual desire
o Upset stomach
o Feelings of exhaustion
o Restlessness o Feelings of confusion
o A sense of unreality
o Difficulty concentrating
o Preoccupation with thoughts of your loved one
o Dreams of your loved one
o A sense of the presence of your loved one
Emotional Behavioral
o Sadness
o Anxiety
o Fear
o Anger
o Guilt
o Despair
o Feelings of helplessness
o Loneliness
o Feelings of emptiness
o Feeling numb
o Loss of ability to fee pleasure o Angry outbursts
o Impatience
o Agitation
o Withdrawal from relatives and friends
o Social isolation
Grief is a normal response to the loss of a loved one. Reactions from grief can affect the whole person. These reactions may include physical, emotional, psychological and behavioral changes. The most important thing for you to remember is that these reactions are a normal response to loss. You may experience none, some, or all of the following:
Physical Psychological
o Weakness
o Tightness in the chest
o Loss of energy
o Loss of sexual desire
o Upset stomach
o Feelings of exhaustion
o Restlessness o Feelings of confusion
o A sense of unreality
o Difficulty concentrating
o Preoccupation with thoughts of your loved one
o Dreams of your loved one
o A sense of the presence of your loved one
Emotional Behavioral
o Sadness
o Anxiety
o Fear
o Anger
o Guilt
o Despair
o Feelings of helplessness
o Loneliness
o Feelings of emptiness
o Feeling numb
o Loss of ability to fee pleasure o Angry outbursts
o Impatience
o Agitation
o Withdrawal from relatives and friends
o Social isolation
LEAN ON ME: HELPING A PARTNER COPE WITH GRIEF
The loss of a friend, family member or loved one can be overwhelming for anyone, but by being part of a strong support system you can play an important role in his or her healing process. Being a great listener is a given, but by recognizing and understanding the complexity of the emotions of grief you will be in a much better position to help someone through the healing process.
The History of the 5 Stages - are they appropriate?
Many doctors, clinicians, and caregivers still use the following stages as milestones for the bereaved. Yet for those struggling with the loss of a loved one, the idea that grief recovery follows a standard timeline of set stages can seem ridiculous, if not infuriating. Certainly those who have had to heal from a painful loss are well aware that the process doesn't fit in to neat little boxes.
These five stages were originally outlined by Elizabeth Kubler-Ross in her 1969 book On Death and Dying, and referred to the steps that a terminally ill patient may go through upon learning of the finality of their situation. These five stages synthesized what caregivers had witnessed in dying patients from studying their coping mechanisms. The stages at that point were not yet known as the 5 Stages of Grief, but rather “The 5 Stages of Receiving Catastrophic News.” Since then, these stages have morphed into what is commonly known as The 5 Stages of Grief:
Denial - This isn’t happening; this isn't real.
Anger - Why has this befallen me? What have I done to deserve this suffering?
Bargaining - If I can get out of this, I promise will be a better person.
Depression - I don’t know what I’m going to do. I don’t care anymore what happens to me.
Acceptance - Okay. This is real, and I’m ready for whatever I have to go through.
How long is too long to be grieving?
On the surface, these 5 Stages of Grief seem sensible. And when the world is spiraling seemingly out of control due to grief, these stages may provide a certain comfort in their structure. But the idea that everyone could go through the same stages at the same time and in the same order led to the early notion that those not following the standard progress of grief may have a pathological form that needed professional help. Worse still, if the bereaved weren’t completely through the stages by a certain time, some might be treated as if their grief was out of sorts or inappropriate to their situation.
More recent efforts have been underway by bereavement researchers to look at how people grieve over time. Synthesizing several grief theories, Jacobs (1993) presented a hypothesized set of responses to grief that expanded the stages:
1. Numbness-disbelief
2. Yearning-anger-anxiety
3. Depression-mourning
4. Recovery
Recent studies (Bonanno, Wortman, et al 2002; 2004) have also highlighted several distinct recovery paths, and found that normal grief reactions persisted even eighteen months after the loss occurred.
Testing the theory that grief occurred in stages, a 2007 study (Maciejewski, Zhan, Block, Prigerson,) found that participants whose partners died due to natural causes simultaneously felt all of the stages of grief to various degrees at each time point measured, with the feelings of acceptance being greatest even at the beginning when a person was closest to the loss, and this acceptance increased over time. And while many might feel that depression/sadness would be next on the list, yearning was the next most frequent response reported throughout the study.
This last study highlights a significant fact: anger and depression do not have to be the defining, lasting features of the grief process. It's important to note that this study raised controversy when it was first published because all of the grief indicators were in decline by six months after the loss, and the authors implied that further evaluation and potential referral for treatment may be necessary after that time. But the timeframe for the course of normal grief and adjustment could last much longer, with survivors incorporating positive memories into their lives years after their loss.
Carnelley, Wortman, Bolger and Burke (2006) found that widowed respondents continued to experience memories and even participate in conversations about their deceased loved one beyond the first four years after the loss. Contrary to popular belief, this was a normal response to the loss of a loved one, not inappropriate attachment or dependence. This was also a sign of good adjustment when participants were able to focus on the positive aspects of memories of their loved one. They also found that “anniversary reactions (i.e., painful reminders of the loss during a specified time/reminder)” were sometimes experienced for decades, with the intensity of these reactions dropping quickly in the first few years. While these might be considered a setback in recovery, it’s important to emphasize the commonality of such reactions (infrequently as they may be) as a normal response in the grief process, not a pathological one. In fact, respondents of a study by Harvey and Hansen (2000) reported that they frequently engaged in “account making and confiding:” talking about their previous relationships with their new partners and /or close others as a way of coping with the loss (although this was used more by women than with men). Many emphasized the positive impact this had on their well being. So if your partner continues to discuss memories and tell stories of the deceased well after the loss, do not despair it can be a normal part of the healing process.
How to help those that are grieving
The grief work premise is that those grieving must confront and express their emotions in order to fully heal from their loss. Most who are familiar with grief work would say that people should reflect, process, and express all that is coming forth regarding the loss of their loved one. But researchers have found that disclosing grief isn’t always beneficial. Stroebe and colleagues (1996; 1997, from Pennebaker 2001) found those that were asked to disclose their grief through writing didn’t differ in the physical or mental health after a one year follow-up. In another study, family members were rated by those grieving as less helpful than friends (Marwit and Carusa 1998).
Obviously this is an intense time, and many factors need to be considered when helping those affected by grief and loss. Being sensitive to the type of loss, overall impact, and, if you are involved your own feelings of grief, may improve your support to those that are grieving. For instance, death due to an unexpected event versus a long-term, painful illness might elicit different reactions from survivors. In the case of a partner passing after a long struggle with a terminal illness, the survivor may have already worked though some of their grieving during the time of their partner’s illness. In addition to grief, the survivor may also feel relief that their partner isn't suffering. But when a partner has died suddenly and unexpectedly, talking about the loss and processing the feelings can be beneficial in coming to terms with the event.
When an intimate partner dies, it’s quite possible to set off a crisis of the entire support system, and friends and family may have difficulty providing support to a partner because they are grieving themselves. Other researchers found that outsiders may be unaware of the full magnitude of the loss, with changes in financial security, emotional support, practical help, and so forth for the survivor. Death can elicit powerful feelings that might overwhelm the surrounding survivors with tumultuous and vulnerable feelings, and often not knowing what to do, those genuinely trying to help might create more harm than good.
Wortman, Wolff and Bonanno (2004) provide culled evidence of three behavior types that can be detrimental to the bereaved:
1. Discouraging open expression or discussion of feelings about the loss
2. Encouraging recovery
3. Falling back on clich'd or scripted support attempts that trivialize the bereaved issues.
What is beneficial is allowing survivors the opportunity to talk about their feelings on their own terms. Expressing concern without pushing advice, as well as reaffirming the presence of support (without necessarily forcing it) is also helpful. If you’re unsure how to approach the situation, it might be best to take a cue from your partner in how open and willing they are to talk about the loss. Finally, talking with others in a similar situation (e.g., a grief support group) is also thought to be beneficial.
Grief Work: Moving Beyond the 5 Stages
The Counseling for Loss and Life Changes group (TLC) suggests that grief work actually begins where the last “stage” of acceptance leaves off. A common definition they use is summarized by the acronym TEAR:
T = To accept the reality of the loss
E = Experience the pain of the loss
A = Adjust to the new environment without the loss
R = Reinvest in the new reality
If you know someone who is grieving right now, make sure they understand they can come to you on their terms. If you are struggling with how best to support them, sometimes asking then “What can I do that would be helpful to you?” or “What do you need from me?” may get a beneficial discussion started.
If you are grieving and would like to seek professional help yourself, pick a counselor who is trained specifically in grief intervention work, and if something isn’t working for you, be sure to let them know. Complicated grief does exist, and if you feel you are experiencing thoughts and emotions beyond what is considered “normal” try reaching out to a trusted doctor, clinician, or caregiver for more information and support. While interventions and therapy can be appropriate for some individuals, it isn't necessary for everyone. Sometimes the best way to heal is just by accepting that adjustment and recovery go beyond five easy stages. Those closest to you can be a great source of support.
by: Heather Setrakian, MA, Associate Research Scientist
eHarmonylabs.com
References and Further Reading:
Counseling For Loss & Life Changes (1997). Article 8- Beware the 5 Stages of “Grief.” Retrieved June 7, 2007 from http://www.counselingforloss.com/article8.htm
Carnelley, K.B., Wortman, C.B., Bolger, N., & Burke, C.T. (2006). The time course of grief reactions to spousal loss: Evidence from a national probability sample. Journal of Personality and Psychology, 91, 476-492.
Harvey, J.H., & Hansen, A.M (2000). Loss and bereavement in close romantic relationships. In C. Hendrick & S.S. Hendrick (Eds.), Close relationships: A sourcebook (pp. 359-370). Thousand Oaks, CA: Sage Publications, Inc.
Jacobs, S. (1993). Pathological grief: Maladaptation to loss. Washington, D.C.: American Psychiatric Press.
Maciejewski, P.K., Zhang, B., Block, S.D., Prigerson, H.G., (2007). An empirical examination of the stage theory of grief. Journal of American Medical Association, 297, 716-724.
Marwit, S.J., & Carusa, S.S. (1998). Communicated support following loss: Examining the experiences of parental death and parental divorce in adolescence. Death Studies, 22, 237-255.
Pennebaker, J.W., Zech, E., and Rime, B (2001). Disclosing and Sharing Emotion: Psychological, Social and Health Consequences. In M.S. Stroebe, W. Stroebe, R.O. Hansson, & H. Schut (Eds.) Handbook of bereavement research: Consequences, coping, and care (pp. 517-539). Washington D.C.: American Psychological Association.
Wortman, C.B., Wolff, K., Bonanno, G.A. (2004). Loss of an intimate partner through death. In D.J. Mashek, D.J.,& A. Aron (Eds.), Handbook of Closeness and Intimacy (pp.305-320). Mahweh, NJ: Lawrence Erlbaum Associates.
The History of the 5 Stages - are they appropriate?
Many doctors, clinicians, and caregivers still use the following stages as milestones for the bereaved. Yet for those struggling with the loss of a loved one, the idea that grief recovery follows a standard timeline of set stages can seem ridiculous, if not infuriating. Certainly those who have had to heal from a painful loss are well aware that the process doesn't fit in to neat little boxes.
These five stages were originally outlined by Elizabeth Kubler-Ross in her 1969 book On Death and Dying, and referred to the steps that a terminally ill patient may go through upon learning of the finality of their situation. These five stages synthesized what caregivers had witnessed in dying patients from studying their coping mechanisms. The stages at that point were not yet known as the 5 Stages of Grief, but rather “The 5 Stages of Receiving Catastrophic News.” Since then, these stages have morphed into what is commonly known as The 5 Stages of Grief:
Denial - This isn’t happening; this isn't real.
Anger - Why has this befallen me? What have I done to deserve this suffering?
Bargaining - If I can get out of this, I promise will be a better person.
Depression - I don’t know what I’m going to do. I don’t care anymore what happens to me.
Acceptance - Okay. This is real, and I’m ready for whatever I have to go through.
How long is too long to be grieving?
On the surface, these 5 Stages of Grief seem sensible. And when the world is spiraling seemingly out of control due to grief, these stages may provide a certain comfort in their structure. But the idea that everyone could go through the same stages at the same time and in the same order led to the early notion that those not following the standard progress of grief may have a pathological form that needed professional help. Worse still, if the bereaved weren’t completely through the stages by a certain time, some might be treated as if their grief was out of sorts or inappropriate to their situation.
More recent efforts have been underway by bereavement researchers to look at how people grieve over time. Synthesizing several grief theories, Jacobs (1993) presented a hypothesized set of responses to grief that expanded the stages:
1. Numbness-disbelief
2. Yearning-anger-anxiety
3. Depression-mourning
4. Recovery
Recent studies (Bonanno, Wortman, et al 2002; 2004) have also highlighted several distinct recovery paths, and found that normal grief reactions persisted even eighteen months after the loss occurred.
Testing the theory that grief occurred in stages, a 2007 study (Maciejewski, Zhan, Block, Prigerson,) found that participants whose partners died due to natural causes simultaneously felt all of the stages of grief to various degrees at each time point measured, with the feelings of acceptance being greatest even at the beginning when a person was closest to the loss, and this acceptance increased over time. And while many might feel that depression/sadness would be next on the list, yearning was the next most frequent response reported throughout the study.
This last study highlights a significant fact: anger and depression do not have to be the defining, lasting features of the grief process. It's important to note that this study raised controversy when it was first published because all of the grief indicators were in decline by six months after the loss, and the authors implied that further evaluation and potential referral for treatment may be necessary after that time. But the timeframe for the course of normal grief and adjustment could last much longer, with survivors incorporating positive memories into their lives years after their loss.
Carnelley, Wortman, Bolger and Burke (2006) found that widowed respondents continued to experience memories and even participate in conversations about their deceased loved one beyond the first four years after the loss. Contrary to popular belief, this was a normal response to the loss of a loved one, not inappropriate attachment or dependence. This was also a sign of good adjustment when participants were able to focus on the positive aspects of memories of their loved one. They also found that “anniversary reactions (i.e., painful reminders of the loss during a specified time/reminder)” were sometimes experienced for decades, with the intensity of these reactions dropping quickly in the first few years. While these might be considered a setback in recovery, it’s important to emphasize the commonality of such reactions (infrequently as they may be) as a normal response in the grief process, not a pathological one. In fact, respondents of a study by Harvey and Hansen (2000) reported that they frequently engaged in “account making and confiding:” talking about their previous relationships with their new partners and /or close others as a way of coping with the loss (although this was used more by women than with men). Many emphasized the positive impact this had on their well being. So if your partner continues to discuss memories and tell stories of the deceased well after the loss, do not despair it can be a normal part of the healing process.
How to help those that are grieving
The grief work premise is that those grieving must confront and express their emotions in order to fully heal from their loss. Most who are familiar with grief work would say that people should reflect, process, and express all that is coming forth regarding the loss of their loved one. But researchers have found that disclosing grief isn’t always beneficial. Stroebe and colleagues (1996; 1997, from Pennebaker 2001) found those that were asked to disclose their grief through writing didn’t differ in the physical or mental health after a one year follow-up. In another study, family members were rated by those grieving as less helpful than friends (Marwit and Carusa 1998).
Obviously this is an intense time, and many factors need to be considered when helping those affected by grief and loss. Being sensitive to the type of loss, overall impact, and, if you are involved your own feelings of grief, may improve your support to those that are grieving. For instance, death due to an unexpected event versus a long-term, painful illness might elicit different reactions from survivors. In the case of a partner passing after a long struggle with a terminal illness, the survivor may have already worked though some of their grieving during the time of their partner’s illness. In addition to grief, the survivor may also feel relief that their partner isn't suffering. But when a partner has died suddenly and unexpectedly, talking about the loss and processing the feelings can be beneficial in coming to terms with the event.
When an intimate partner dies, it’s quite possible to set off a crisis of the entire support system, and friends and family may have difficulty providing support to a partner because they are grieving themselves. Other researchers found that outsiders may be unaware of the full magnitude of the loss, with changes in financial security, emotional support, practical help, and so forth for the survivor. Death can elicit powerful feelings that might overwhelm the surrounding survivors with tumultuous and vulnerable feelings, and often not knowing what to do, those genuinely trying to help might create more harm than good.
Wortman, Wolff and Bonanno (2004) provide culled evidence of three behavior types that can be detrimental to the bereaved:
1. Discouraging open expression or discussion of feelings about the loss
2. Encouraging recovery
3. Falling back on clich'd or scripted support attempts that trivialize the bereaved issues.
What is beneficial is allowing survivors the opportunity to talk about their feelings on their own terms. Expressing concern without pushing advice, as well as reaffirming the presence of support (without necessarily forcing it) is also helpful. If you’re unsure how to approach the situation, it might be best to take a cue from your partner in how open and willing they are to talk about the loss. Finally, talking with others in a similar situation (e.g., a grief support group) is also thought to be beneficial.
Grief Work: Moving Beyond the 5 Stages
The Counseling for Loss and Life Changes group (TLC) suggests that grief work actually begins where the last “stage” of acceptance leaves off. A common definition they use is summarized by the acronym TEAR:
T = To accept the reality of the loss
E = Experience the pain of the loss
A = Adjust to the new environment without the loss
R = Reinvest in the new reality
If you know someone who is grieving right now, make sure they understand they can come to you on their terms. If you are struggling with how best to support them, sometimes asking then “What can I do that would be helpful to you?” or “What do you need from me?” may get a beneficial discussion started.
If you are grieving and would like to seek professional help yourself, pick a counselor who is trained specifically in grief intervention work, and if something isn’t working for you, be sure to let them know. Complicated grief does exist, and if you feel you are experiencing thoughts and emotions beyond what is considered “normal” try reaching out to a trusted doctor, clinician, or caregiver for more information and support. While interventions and therapy can be appropriate for some individuals, it isn't necessary for everyone. Sometimes the best way to heal is just by accepting that adjustment and recovery go beyond five easy stages. Those closest to you can be a great source of support.
by: Heather Setrakian, MA, Associate Research Scientist
eHarmonylabs.com
References and Further Reading:
Counseling For Loss & Life Changes (1997). Article 8- Beware the 5 Stages of “Grief.” Retrieved June 7, 2007 from http://www.counselingforloss.com/article8.htm
Carnelley, K.B., Wortman, C.B., Bolger, N., & Burke, C.T. (2006). The time course of grief reactions to spousal loss: Evidence from a national probability sample. Journal of Personality and Psychology, 91, 476-492.
Harvey, J.H., & Hansen, A.M (2000). Loss and bereavement in close romantic relationships. In C. Hendrick & S.S. Hendrick (Eds.), Close relationships: A sourcebook (pp. 359-370). Thousand Oaks, CA: Sage Publications, Inc.
Jacobs, S. (1993). Pathological grief: Maladaptation to loss. Washington, D.C.: American Psychiatric Press.
Maciejewski, P.K., Zhang, B., Block, S.D., Prigerson, H.G., (2007). An empirical examination of the stage theory of grief. Journal of American Medical Association, 297, 716-724.
Marwit, S.J., & Carusa, S.S. (1998). Communicated support following loss: Examining the experiences of parental death and parental divorce in adolescence. Death Studies, 22, 237-255.
Pennebaker, J.W., Zech, E., and Rime, B (2001). Disclosing and Sharing Emotion: Psychological, Social and Health Consequences. In M.S. Stroebe, W. Stroebe, R.O. Hansson, & H. Schut (Eds.) Handbook of bereavement research: Consequences, coping, and care (pp. 517-539). Washington D.C.: American Psychological Association.
Wortman, C.B., Wolff, K., Bonanno, G.A. (2004). Loss of an intimate partner through death. In D.J. Mashek, D.J.,& A. Aron (Eds.), Handbook of Closeness and Intimacy (pp.305-320). Mahweh, NJ: Lawrence Erlbaum Associates.
Tuesday, April 6, 2010
Dealing with frustration
I have come to realize that I no longer tolerate other people trying to coerce me into doing something I do not want to do. It is also frustrating for someone to try to make me feel guilty for my lack of desire to do something or go somewhere. I do not have time to waste on those things.
Yes, I still do things I don’t want to do if I think it benefits the other person in a meaningful way. That is the loving and caring thing to do. I try to live my life without causing harm to any other living being. I am human, however, and have been known to shout at someone when I am frustrated in some way.
In talking with my therapist I have learned that frustration leads to anger and that anger unexpressed leads to depression. Since I have a predisposition to depression, both hereditary, emotional, and physical, I have to watch out.
Last week I was especially frustrated and I needed to release it before I got any worse. I seem to be incapable of yelling, hitting things, etc. so I did the only thing I could think of, I yelled at my therapist by email. I felt sorry afterward and apologized and told him today that I was embarrassed to come back because I had yelled but he said he was glad I had done so. It seems like that may work for me and he does not mind receiving my frustrated, angry, fighting mad emails. After all, they are not directed at him, and, even if they were, it is important for him to know if he has somehow said or done something that has frustrated me.
Today I am much calmer and happier. I have less than two very, very busy weeks before out trip to Utila where all my stress and frustration will evaporate in the beautiful coral reef seas. I am focusing as much of my self as I can on maintaining that image in the front of my mind.
As the song says, Let it Be, and so I shall try.
Yes, I still do things I don’t want to do if I think it benefits the other person in a meaningful way. That is the loving and caring thing to do. I try to live my life without causing harm to any other living being. I am human, however, and have been known to shout at someone when I am frustrated in some way.
In talking with my therapist I have learned that frustration leads to anger and that anger unexpressed leads to depression. Since I have a predisposition to depression, both hereditary, emotional, and physical, I have to watch out.
Last week I was especially frustrated and I needed to release it before I got any worse. I seem to be incapable of yelling, hitting things, etc. so I did the only thing I could think of, I yelled at my therapist by email. I felt sorry afterward and apologized and told him today that I was embarrassed to come back because I had yelled but he said he was glad I had done so. It seems like that may work for me and he does not mind receiving my frustrated, angry, fighting mad emails. After all, they are not directed at him, and, even if they were, it is important for him to know if he has somehow said or done something that has frustrated me.
Today I am much calmer and happier. I have less than two very, very busy weeks before out trip to Utila where all my stress and frustration will evaporate in the beautiful coral reef seas. I am focusing as much of my self as I can on maintaining that image in the front of my mind.
As the song says, Let it Be, and so I shall try.
Michael J Fox interview
As I mentioned in my previous post, the May, 2010, Reader’s Digest had an interview by Amy Wallace with Michael J. Fox. I was moved beyond belief by his interview. His inspiration has given me hope of further acceptance of this menace that “eats” our brains. I am quoting parts of the interview here with some minor paraphrasing where I have left out parts of a sentence at the beginning of a paragraph. I hope you enjoy it as much as I did and do.
Most of the following are direct quotations from that interview.
Michael J Fox philosophy
I’ve come to realize that when I’m symptom-free on the medication, that’s not my natural state. My natural state is trembling and halting and having difficulty talking. So I enjoy the reprieve, but I’m not fooled by it. And if I’m in public and I am symptomatic, it has no bearing on who I am or what I’m trying to get done. Not to get too Zen about it, but if I stand apart from the moment and say, “In this moment, I’m struggling and I can’t do what I want to do”, not only have I not had a good moment, I’ve missed the moment completely, just by standing outside it and judging it.
Let me make this suggestion. Don’t spend a lot of time imagining he worst-case scenario. It rarely goes down as you imagine it well, and if by some fluke it does, you will have lived it twice. When things do go bad, don’t run, don’t hide, it will take time, but you’ll find that even the gravest problems are finite, and your choices are infinite.
There is one basic lesson I’ve learned, it is the cardinal importance of this moment – right now.
At first (when he was first diagnosed at age 30) I went into denial. Refusing to disclose my situation to everyone but family, and covering the symptoms with medication, I was really trying to hide from myself. But with no escape from the disease, its symptoms, and its challenges, I was forced, after exercising in vain all other options, to resort to acceptance, which simply means acknowledging the reality of a situation. As my acceptance grew, I came to understand that loss is not a vacuum. If I didn’t impulsively try to fill the space it creates, it gradually began to fill itself, or at least present choices.
Most of the following are direct quotations from that interview.
Michael J Fox philosophy
I’ve come to realize that when I’m symptom-free on the medication, that’s not my natural state. My natural state is trembling and halting and having difficulty talking. So I enjoy the reprieve, but I’m not fooled by it. And if I’m in public and I am symptomatic, it has no bearing on who I am or what I’m trying to get done. Not to get too Zen about it, but if I stand apart from the moment and say, “In this moment, I’m struggling and I can’t do what I want to do”, not only have I not had a good moment, I’ve missed the moment completely, just by standing outside it and judging it.
Let me make this suggestion. Don’t spend a lot of time imagining he worst-case scenario. It rarely goes down as you imagine it well, and if by some fluke it does, you will have lived it twice. When things do go bad, don’t run, don’t hide, it will take time, but you’ll find that even the gravest problems are finite, and your choices are infinite.
There is one basic lesson I’ve learned, it is the cardinal importance of this moment – right now.
At first (when he was first diagnosed at age 30) I went into denial. Refusing to disclose my situation to everyone but family, and covering the symptoms with medication, I was really trying to hide from myself. But with no escape from the disease, its symptoms, and its challenges, I was forced, after exercising in vain all other options, to resort to acceptance, which simply means acknowledging the reality of a situation. As my acceptance grew, I came to understand that loss is not a vacuum. If I didn’t impulsively try to fill the space it creates, it gradually began to fill itself, or at least present choices.
Off to the Dentist
Over the weekend I chipped one of my lower front teeth so Monday morning found me in as an emergency for a fix. It turns out I need a veneer but I was not prepared to sit in the chair with my mouth open for that long. I got a temporary fix instead and the cost of that will go toward the cost of the veneer later.
The problem I discovered almost as soon as I sat down and a technician looked at me was the pain I experienced as soon as I opened my mouth. When my dentist came in to do the repair and I had to keep my mouth open for about 15 minutes my lower job started trembling from the pressure of just keeping my mouth open.
Afterward, my jaw hurt all the way up through my eyes and out my ears. Even all of my teeth hurt, although he had used no anesthetic. I worry how I am going to manage it when I have to keep my mouth open for more than 30-45 minutes for the drilling, molds, etc. to be done. The Parkinson’s part of this disease has really hit me harder than I had thought.
On another note, I had posted a rather negative post over the weekend which I have deleted. I am human, I admit, and I have down days like everyone else, but that one was too down to post. I see my therapist today and will go over it all with him. He responded to my email over the weekend and that helped. I am still not 100 percent back to my cheery, sunshiny self, but I will get there soon as we go to Utila in less than 2 weeks.
One technique I used while I was down was to visualize an experience I had on a night dive in Utila. I found a small, baby peacock flounder who was only about 4 inches long. I shone my light down right in front of him and lay in the sand and watched him eat. His little eye stalks looked from me to his food and he was so cute. I use he as I have no idea how to determine a flounders sex. I lay in the and about a foot away from him where I could study him up close and personal. After about 15 minutes I looked up and realized I was the only person in the water and surfaced back to the boat. I just love those eyeball to eyeball glimpses into another creature’s life.
I just read an interview with Michael J. Fox in the Reader’s Digest. It inspired me and made me feel somewhat embarrassed to let some bad moments interfere with my experiencing life in all its glory. I am glad, though, that I was able to calm myself with something from my diving experience. Those memories and visualizations are an important arsenal in my fight against depression, anxiety, and this disease. Thank you, Michael J. Fox, for your inspiration and your help to fight Parkinson’s Disease, and, hopefully, help us with MSA also get assistance in finding a cure.
The problem I discovered almost as soon as I sat down and a technician looked at me was the pain I experienced as soon as I opened my mouth. When my dentist came in to do the repair and I had to keep my mouth open for about 15 minutes my lower job started trembling from the pressure of just keeping my mouth open.
Afterward, my jaw hurt all the way up through my eyes and out my ears. Even all of my teeth hurt, although he had used no anesthetic. I worry how I am going to manage it when I have to keep my mouth open for more than 30-45 minutes for the drilling, molds, etc. to be done. The Parkinson’s part of this disease has really hit me harder than I had thought.
On another note, I had posted a rather negative post over the weekend which I have deleted. I am human, I admit, and I have down days like everyone else, but that one was too down to post. I see my therapist today and will go over it all with him. He responded to my email over the weekend and that helped. I am still not 100 percent back to my cheery, sunshiny self, but I will get there soon as we go to Utila in less than 2 weeks.
One technique I used while I was down was to visualize an experience I had on a night dive in Utila. I found a small, baby peacock flounder who was only about 4 inches long. I shone my light down right in front of him and lay in the sand and watched him eat. His little eye stalks looked from me to his food and he was so cute. I use he as I have no idea how to determine a flounders sex. I lay in the and about a foot away from him where I could study him up close and personal. After about 15 minutes I looked up and realized I was the only person in the water and surfaced back to the boat. I just love those eyeball to eyeball glimpses into another creature’s life.
I just read an interview with Michael J. Fox in the Reader’s Digest. It inspired me and made me feel somewhat embarrassed to let some bad moments interfere with my experiencing life in all its glory. I am glad, though, that I was able to calm myself with something from my diving experience. Those memories and visualizations are an important arsenal in my fight against depression, anxiety, and this disease. Thank you, Michael J. Fox, for your inspiration and your help to fight Parkinson’s Disease, and, hopefully, help us with MSA also get assistance in finding a cure.
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