Grief & Loss
Caring For The Caregiver After Death
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Coping with Loss and Grief—What seems to work
The Caregiver and Post-Traumatic Stress: How to Soulfully Cope With Your Grief?
Every year, approximately one million Americans experience the death of a spouse. Sixty-five percent of the time, the surviving spouse is a woman. About half of the 20 million women in this country who are over 65, are widows. Less than 10% ever remarry. And although the majority of widows successfully adjust to their loss within two to four years, close to 20% develop complications in their grief, resulting in depression, alcohol or prescription drug abuse, and/or greater susceptibility to illness.
According to clinical psychologist Dolores Gallagher-Thompson, who studied 212 men and women 30 months after they lost a spouse, those who experienced "complicated bereavements" were found to have a history of depression, tumultuous marriages and strong dependency on the deceased spouse for social activities. They also had spouses who died unexpectedly as well as experiencing a series of other losses just before losing their spouse. Gallagher-Thompson goes on to say that, "You don't want to tell people they will get over it, that it all will be resolved with time. Healthy adults tend to grieve for a long time…"
In an article in the June 27th, 2001 edition of the Journal of the American Medical Association, it says that the death of a spouse may impact people differently depending on whether or not they served as caregiver. According to a study of bereaved individuals aged 66-to 96, those people who did not serve as caregivers tended to have more depression and weight loss after their spouse died, than those who did serve as caregivers. What's more, those who underwent the stress of caregiving, seemed to take better care of themselves, being less likely to miss doctor's appointments and more likely to get adequate sleep and exercise.
Seeing The Forest for The Trees: The Difference Between Soul-Filled Grief and Going "Crazy"
One factor that can complicate survivor's grief is the inability to distinguish what's normal bereavement from what's not. Many people who come to my grief group feel like they're going "crazy." Many members often mistake normal grief for clinical depression.
One of the things I have to do as a grief therapist is to "normalize" the person's grief and explain the difference between being in a state of bereavement and suffering from a serious psychiatric disorder. Usually, a serious depression will involve thoughts of suicide, thoughts of homicide, an inability to sleep, or the converse, sleeping all day and night, not eating, loss of self-esteem, and a refusal to accept help.
You can think about the difference between grief and depression in this way: With grief, the world looks poor and empty while in depression, you feel poor and empty. In both grief and depression, you can experience sleep disturbances, appetite disturbances and intense sadness. But, in grief, you won't typically experience the loss of self-esteem found in most clinical depressions.
Another thing: to be diagnosed with a serious psychological disorder, you have to meet ALL of the "Four D's." They are:
1. Distress-your feelings and state of mind bother you intensely
2. Deviance-society deems your behavior and state of mind as being "abnormal"
3. Dysfunctional-your feelings or state of mind prevent you from doing ANYTHING: working, recreating, schooling, and/or socializing.
4. And, Dangerous-your feelings or state of mind pose a potential or imminent threat to yourself or others.
As I tell my grief group, "Without the 'Four Ds,' you can't be crazy." Many times, just by hearing that they are not crazy, and in learning what "normal" grief is, my clients will experience a deep sense of relief, which allows them to move further along in their mourning process.
You may be asking yourself, "So, if I'm not going crazy, and this is normal grief, what are the signs or symptoms that I should look for?" Well, they can range anywhere from rage, guilt, terror, fear, dependency, denial and sadness, to anger, guilt, loneliness, fatigue, helplessness, shock, relief, acceptance or even numbness.
In my work as a grief counselor, I have observed that the following six phases of loss are the most common reactions which family survivors will experience after losing a loved one to cancer. They are:
1. Crisis and shock. This is the initial emotional reaction to the death of your beloved family member. As with the cancer patient himself, this stage frequently includes panic, denial, shock and disbelief.
2. Isolation and awareness of loss. This is characterized by not being able to talk about your grief because of being engulfed with overwhelming feelings of pain and sorrow. Emotions such as, anger, guilt, shame and fear are common.
3. Anger and the need to withdraw. Anger is a natural part of grief. Grief expert and author, Dr. Catherine Sanders, writes in her book, Surviving Grief and Learning to Live Again, that: "new grief always reminds us of old griefs. The pain that has diminished with time is revitalized and experienced anew, when we are again exposed to death." So your spouse's, child's or parent's death will bring up memories of other significant losses that you have experienced. Grieving, therefore, can be very fatiguing!
4. Reconstruction and healing. At this stage, you start to feel less overwhelmed and will find yourself gradually having more energy to begin emotional reconstruction.
5. Intermittent sadness/"depression." This phase is characterized by periods of on-and-off sadness. This kind of reactive sadness or depression (which is not a major clinical depression with the "Four D's,") is perfectly normal. It is temporary and is to be expected during the grieving process.
6. And finally, Renewal. In this final phase, you find yourself "going on with life," establishing new goals and forming a new identity, separate from the one you had with the person you lost.
One particular emotion that may get in the way of your grief is guilt. It's common, expected and normal. Those of us in mourning begin to remember things we did that we shouldn't have done or things we said that we shouldn't have said to our beloved before they died. However, I have found that over several months of mourning (12-36 months in my experience), as you and the rest of the family go through some or all of the six phases of grief outlined above, you will be able to work through these feelings of remorse knowing that you did the best you could with the tools you had at the time.
Roadblocks to Successful Grieving: The Double Whammy
Many of my bereavement clients wind up being depressed for feeling depressed, due to other people telling them that they "shouldn't feel" the way they feel or that they should "move on." All this does is to make the bereaved person feel even more crummy about themselves and their situation. By people saying such things, the person in mourning is hearing that they shouldn't be feeling what they are feeling, not to show their feelings in front of others, that their loss is not a valid loss, and that they always can "replace" whoever they lost, as if that person was nothing. This is the "double whammy."
By buying into the double whammy, you—the person in grief—will only prolong your grieving process, making it more painful than it needs to be. Why? Because you end up not only having your original pain, but now, you have compounded the suffering by stuffing your feelings. This leads to a build up of psychic pressure not unlike a volcano ready to explode! My point? There are more productive and effective ways to cope with grief. And all of these ways have one thing in common: the way to "get over" your pain, JUST LIKE WE MENTIONED FOR THE CANCER PATIENT EARLIER IN THIS BOOK, is by going "through it," by being "with it," and accepting it. That's the quickest, most effective way that I know, to begin the healing process.
What's Works In My Bereavement Groups: Tips On How To Cope
Grief expert and psychologist, Dr. Therese Rando, in her book, How To Go On Living When Someone You Love Dies, writes that in order to "resolve" grief, we all need to acknowledge and understand our loss, experience our pain, and move adaptively into a new life without our dearly departed. This is a crucial point since many of my current bereavement clients struggle with this self-imposed dilemma: "How can I keep my loved ones' memory alive, without having to be in pain to do it?"
In conducting loss and grief groups for more than 20 years now, and in currently leading a weekly bereavement therapy group that is largely made up of people who lost someone to cancer, I have found that the following steps are the most helpful for people struggling with grief.
First, I review the 6 phases of grief that people in mourning typically go through and "normalize" the rotten feelings that they are experiencing. I then point out that it didn't take an hour to become close and connected with their dearly departed, so it's not going to take an hour to "get over" their pain. The relationship they established with their spouses, or their parents or with their child took place over time. Likewise, the grief process and the painful feelings associated with it will also take time to resolve.
I also point out how "pop psychology" has committed an egregious offense in telling people that by six months they should be over their grief and already "moving on" with their lives. This is soul-deflating, not soul-enhancing. Much of pop psychology has distorted Dr. Elisabeth Kubler-Ross's "five stages of grief," by saying ALL people grieving HAVE to go through ALL five stages in order to heal.
This popular notion is just plain cruel. People grieve at different rates in different ways. There is no fixed "way of grieving" (including the 6 phases that I outlined earlier). I remember Dr. Kubler-Ross telling me and other lecture attendees in 1981, that she didn't mean for her "five stages of dying," (Denial, Anger, Bargaining, Depression, and Acceptance) to become some "cookbook formula," to be imposed on the grieving as if it were an obligation.
She said some people stay stuck in one stage during the entire time that they grieve and some may skip stages, while others go back and forth between stages. She implored us to not pigeon hole people in an artificial and burdensome manner. By doing so it would only make their mourning process more difficult. The message? Take your time. There is no ONE "right way," to grieve. Give yourself a break. In my experience, the most intense feelings of loss can take anywhere from one to three years to dissipate before you feel like you are emerging from the emotional abyss of grief.
Also it's important to keep in mind that you will grieve as deeply as you loved. The more you loved someone, the deeper you will grieve.
In addition, beware of "reminders." When you are grieving, almost anything and everything can remind you of your dearly departed. Songs on the radio, smells at restaurants, favorite cereals at the supermarket, and of course, anniversaries and holidays such as Christmas, Thanksgiving, birthdays, Mother's Day, and Father's Day, are typically the most difficult times a year for someone in grief.
Be prepared. It is absolutely normal for you to sink into the emotional abyss and feel deeply saddened, to feel pain, and miss the person you loved during these times. My bereavement groups tell me the first two years are the most difficult for getting through the holidays. Starting with the third year, the pain is less painful, the sadness is a little less sad, and the sobbing less intense.
Expect to take a step or two "backwards" for every step forward that you make in your grief, when one of these significant holidays come about. You can get control of the lack of control by planning to surround your self with soulfully supportive people and to do what you need to do, for your mind, body, and spirit, to ritualize and acknowledge your pain.
Another indicator that someone has recently suffered a close death in the family is by hearing that person either idolizing or demonizing the person for whom they are grieving. Either the spouse or parent continues putting the deceased partner or child up on a pedestal—as if they could do no wrong—or, they concentrate on all the bad and inconsiderate things that the person did while they were still alive.
Both of these tendencies are to protect the soul. These "protective" maneuvers reduce pain. It's very hard for a recently bereaved person to think about all the rotten things that their dearly departed did when they were alive, without feeling pangs of guilt for thinking such thoughts.
However, by not doing this, it causes the bereaved to become soulfully out of balance, and in my experience, keeps the person "stuck," in their grief. In group, I have to address and help them "work through" the fear that if they think anything "negative" about their departed loved one, that that would be disrespectful in some way. Sooner or later, they must be able to do this in order to fully "let go," and say good-bye to the person who they've lost.
Similar dynamics are also true for the bereaved person who demonizes their lost loved one. It's always easier to say "good-bye" or "let go" of someone when you are angry and indignant instead of being hurt or feeling sad. Our anger "masks" the pain and provides us propulsion to say what we need to say and move on.
However, anger is a "secondary" emotion—meaning, that it is fueled by two other primary emotions: hurt and fear. These feelings frequently arise from the shadow side of our soul. And until those feelings of hurt and fear are brought out and dealt with, the person grieving will not be able to go forward in their mourning process. So, at the right time, one of the things I have to do as group facilitator, is to help members say good-bye, by looking at the "whole" person for whom they are grieving—both the good and the bad.
Another helpful healing intervention that I use in the grief group is to explain to the surviving family members—many of whom served as caretakers to the deceased—that they will often come out of their experience of caretaking feeling like a battle-fatigued soldier returning from war. If you served as caregiver for the person who you are mourning, then in addition to your normal feelings of grief, you may be experiencing symptoms of Post-Traumatic Stress Disorder, which include:
nightmares, flashbacks, depression, anxiety and avoiding all places, people and activities that were associated with the trauma of caregiving. This is normal, and some of this can be dealt with in group therapy, but some of it may have to be dealt with in one-on-one therapy with a licensed psychologist familiar with treating PTSD. Sometimes, temporary (12 weeks or so) medication may be needed to help you sleep and feel less depressed or anxious.
Sleep aides like Ativan, and anti-depressants like Paxil, Prozac or Celexa, may be needed, and can be prescribed by your family physician or a consulting psychiatrist. This is not a sign of weakness or badness. Don't think that. If you find yourself thinking these thoughts, then I ask yourself this: "If I split my head open in a motor cycle accident, wouldn't I want the ER physician to stitch me up and give me anti-inflammatory drugs and antibiotics to prevent infection?"
Most people would say "yes." "Well, consider grief as being an "emotional head split," and just like having a physical injury, your symptoms of PTSD require medication and treatment. Brave Green Berets in combat, as with police SWAT team members and firemen, frequently experience PTSD-like symptoms after encountering traumatic events, that require debriefing, counseling, and sometimes, temporary medication (the horrifying events of 9-11 epitomize this fact).
And these guys are the 'bravest of the bravest.' If people like this experience PTSD and need treatment, then don't you think, based upon the battle that you have just gone through, that you too deserve proper care for being among the 'bravest of the bravest'?" If you think that you are suffering from PTSD, you should make an appointment with your physician or get a referral to a psychiatrist, so they can provide you with the proper medication that you may need.
I often hear from grief group members that after their loved one died, they began to feel "lost," as if they are like a ship without an anchor. They had defined themselves through familiar roles such being a "wife," or "mother," or "daughter." Once their "role-mate," is gone, be that husband, child or parent, they now feel like they no longer have any roles—in essence, they feel "role-less!"
So, one of my tasks as group facilitator is to help the client find new roles to partake in, re-defining who they are by establishing a new set of goals of what they want out of life. This is a difficult process, but with time, and with sharing, and bouncing ideas off of the other group members, they gradually develop their own "new normal," way of being.
Another soulful suggestion is for you—the bereaved—to give yourself permission to be less than perfect. As we mentioned earlier, "grieving is fatiguing." In fact, think of the mourning process as "grief chemotherapy." One of the most frequently heard complaints from members of my bereavement group is the one about not being able to do the things they normally did before their loss due to not having enough energy to keep up with their current obligations.
In experiencing grief related fatigue, this will often leave you feeling guilty for not being "super mom" or "super husband." This is one of the toughest issues for me to try to tackle. It is an issue that is connected with self-worth stemming from your personal history and how much you were encouraged to give to yourself while were growing up.
Many of my group members were brought up with the admonition to "put other people's needs first," rather than becoming "self-absorbed" or being "selfish," by tending to their own needs as well. My reply to this is that when other people call us "selfish," it's because we are not doing things "their way." Bottom Line: We can only show others love, care and compassion if we FIRST have it for ourselves.
We have to be "okay" with giving it to ourselves FIRST, before we can successfully give it to another. We have to be willing to nourish our own soul before we can help nourish someone else's. I remind you about all that you have sacrificed as caregivers, and to now, allow yourself to receive some of that very same caregiving from others while you are grieving.
To do this, I often use the analogy of "a fair return on your investment." Couched in this manner, most people will give themselves what they need during this time of grief—even if that means not being able to do all of their chores or fulfill all of their "normal" obligations.
The average time most people spend in my weekly bereavement group is 12 months. And although by this time, most members are feeling significantly better, they are resolute in saying that they will always carry within their hearts, the painful memory of the person they have lost. It is with this recognition, and with bravery befitting a battle hardened combat veteran, that they inevitably heal and say their good-byes to the group, as they begin pursuing their new roles and a new way of being in the world with the person they loved so dearly no longer at their side.
Summary
In summary, let me say this: No one can truly "know" how it feels to lose a spouse, parent, or child to cancer—UNLESS they've been through it themselves. People who say "just move on," don't understand what it's like to grieve a significant loss.
If you are grieving, it is important that you give yourself permission to feel the feelings that come up and to allow friends and family to support and care for you. When your beloved family member dies, it is like a well-woven tapestry being suddenly torn apart. It hurts! And the grief and pain connected with this loss will also take days, weeks, months and years to fully subside.
To close, I'd like to quote Gayle Heiss, who writes, "…A willingness to investigate grief, to approach it directly and probe deeply, forges a pathway THROUGH it. Stepping into our emotions, moving through them, painful as that may be, allows us to gain understanding and build strength. Our energy remains vital, and although still difficult, life retains its continuity."
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