Loss and Bereavement: The Support Services for Families With Children With Brain Tumors

There are many thoughts that run through a person’s mind when they learn that their child or sibling has been diagnosed with a brain tumor. What will my child’s life and my life be like now? How will this affect me? How will our family survive such a trauma? These and a million other questions come to mind when your child is diagnosed with a brain tumor. Many parents and children feel grief towards a life that was lost and these feelings can occur whether or not there was a death. The life you were planning for yourself or your child may no longer be possible and you have to cope with all of these new feelings while still managing day to day life, a daunting task.

Perhaps more devastating is the actual loss of a child. This experience is heart breaking and life altering for parents, siblings, other family members and friends, as it does not follow the proper course of life. The process of grief differs from person to person. Grief is a very subjective emotion and depending on the age and the relationship a person had with the child, their reaction to the loss will take on a variety of forms. For many, however, it is a long and painful journey, and it causes some to feel alone and forgotten by others who go on with their lives.

There are many new emotions and unexpected feelings that accompany the loss of a child such as, anger, guilt, abandonment, depression, etc. Though there is no way to completely quell all the feelings that occur with losing a child, there are support services and networks of other parents to help you cope with such a tragic loss. The support you can receive from others also dealing with a loss helps you understand that you are not alone and many, if not all, of the feelings you may be having are normal, in a way and this type of support is immeasurable.

Many are not aware of the different avenues you can take when seeking support. The social workers at many organizations are available to help you determine what services will be the most appropriate in helping you and your family manage all of the psychological and emotional difficulties that are associated with losing a child.

“The feeling of connecting to other parents is that sense of knowing that you are not alone.” -quote from a bereaved parent

These organizations typically offer many programs including a Loss, Grief and Bereavement Program for families who have lost a child. Their goal is to support families through this difficult experience by connecting them to other bereaved families, providing supportive services, and offering therapeutic and educational information. We know everyone has his or her own unique way of grieving. It is for this reason that we offer different forms of support to address varying needs and ages.

What Anyone Can Do to Help a Mourner

What can you do to help someone you care about who is mourning a major loss in life? What do mourners need from those in their support network in order to cope with the stress of grief, and find the courage and strength to deal with all of the changes imposed by loss?

Here are three actions you can take to be of immediate assistance and help on the long journey of adapting to the new environment that has to be faced.

1. Be there. It seems at first blush that the obvious thing anyone should do is go to the side of the mourner. However, many people hesitate, sometimes out of fear or thinking that others will be there. What is important to consider is that, in the final analysis, only the mourner answers the question of who should be there. If you are a friend, your presence alone will never be forgotten. You do not have to say much. Being around and accepting the pain fills one of the most important needs of the mourner–recognition and validation of the loss and what the person is going through.

Allow the mourner to be in charge and take your cues from what he/ she have to say. Loss is always a part of a story that has to be told, especially when mourning. Let the mourner do this at his/her pace. Your greatest challenge as a caregiver to the bereaved is to deal with the silence and let silence play its role. In this vein, all too often caregivers try to say something in an attempt to break the silence and ease the pain, when their presence and not anything they say, speaks volumes. Nothing you can say will fix it. Share the mourner’s pain.

2. Do the chores. Be proactive and look ahead at what the mourner would have normally been doing if the loss had not occurred. Think about the responsibilities that one may have despite a loss. Who is most dependent on the person who is mourning? Are there others at a work place that should be informed? If there are children involved, consider what you can do to lighten the burden on the mourner in terms of caring for their needs.

Doing the chores is not an easy as it sounds. It frequently takes much time and effort for several days. You may also need to enlist the help of members of your own family or friends of the mourner. Sometimes the chores may include doing something with the mourner. Or you may sense you should play a supportive role in funeral planning or going to the funeral home with the mourner.

3. Don’t quit early. It is not uncommon for caregivers to feel that their assistance is no longer needed. Some caregivers grow tired of the ordeal. After a couple of weeks have gone by, many mourners report that those who have been most helpful tend to reduce contact. At first, this seems quite normal. However, it is just at this time when the mourner is often in most need of human contact.

If the loss was the death of a loved one, having to face the ordeal of living without the deceased, begins to be more stressful. Bills, new responsibilities, financial evaluations, new roles or demands often deluge mourners who at the very least need someone that will listen to their continued difficulties. Also, the false belief by many in the general population that grief is a short two or three week stint and the mourner should be getting back to normal, encourages pulling away and reduced contact.

In reality, the need for human contact never ends–for all of us. For months, a very special interest has to be taken in those who are mourning, sometimes up to two years. It is especially important to inquire how the person is doing in relation to the new surroundings that he/she is trying to adapt to. This should include being willing to talk about the deceased, especially when the mourner brings up the subject.

In summary, make every effort to push yourself to be around the person in pain, especially if you realize he/she wants you there. This is difficult. It is not easy to watch one that you care about suffer. Yet, the reassurance that the mourner receives by your presence is of immense value. This is especially true many months after the loss, as most people think the person is “doing so well,” when in fact every day is filled with hardships. Let the person know you are still there and aware.

Moving Through Grief – What’s Normal?

Do you feel as though there is something wrong with you because of the way the death of your loved one is affecting you? Are those around you hinting that you have to “get hold of yourself” or you should be getting over “it”?

Don’t let them add to your feelings of isolation because of their lack of understanding. Most everyone has a preconceived notion about what is and isn’t a normal human response to the death of a loved one. But the problem is (and its their problem) only you know the degree of emotional investment you had in the loved one who died–not your friends or family.

Grieve according to your timetable, not theirs. So what’s normal that seems and feel so abnormal at times and that can scare our support persons? The following have all been associated with the grief process through the years.

1. Let’s begin by understanding that grief is a long, complex journey with many ups and downs, and unpredictable twists and turns. No two people grieve in the same way, even in the same family. The process is so much longer than our culture teaches. Most mourners are initially filled with shock and disbelief, even when they have known that their loved one was going to die. One cannot fathom that the person is no longer physically present. You may feel numb, devoid of feeling. Normal.

2. You may (or may not) be filled with anger and/or resentment. Anger is often directed at medical personnel, sometimes at other family members, God, friends who don’t show up, clergy, funeral directors, or the deceased–or for feeling abandoned. Do not expect your support network, as hard as they may try, to understand your grief or your anger. You may even be angry at yourself for what you did or did not do, whether real or imagined. Normal.

3. It is not uncommon to have a variety of physical responses, other than crying or screaming. Digestive disturbances, loss of appetite, headaches, fatigue, or the resurfacing of old aches and pains can be experienced. Nervousness or shaking, weight gain or weight loss have been reported. What we feel emotionally is normally transferred to every cell in the body. Usually, it all culminates in the inability to sleep.

4. You could feel a gnawing emptiness, or irritability, a sense of being overwhelmed, disoriented, or with no defenses. Disorganized thinking, forgetfulness, inability to concentrate, or confusion could occur. Fear of the future, being alone or panicking is sometimes reported. Guilt, regret, or depression may set in as time goes on and one replays a variety of scenarios leading up to the death. Surges or waves of emotion are frequent.

5. Over time, when the reality of the loss sinks in and early support begins to wane, the real work of grief begins. Here is where you may feel extreme loneliness, isolation, yearning, or difficulty in establishing new routines necessitated by the absence of your loved one. Feelings of rejection, despair, or hopelessness may appear. This is also the time when well meaning people want you to get better in a hurry and you need to follow your own agenda for grieving.

Often life is questioned. What meaning can it possibly have now? You may see no purpose for you in a world without your beloved, and the very thought of ever feeling happy again is lunacy at best. You continue to procrastinate, find it hard to make decisions, lack focus, and could be impatient with everyone. At this time, it is essential to begin to work on establishing a new relationship with the deceased by learning to love in separation, beginning the search for meaning and attempting to reinvest in life.

To summarize, you undoubtedly will experience a number of the above responses to the death of a loved one. They have been, in various forms, experienced by millions of others before you. The overall necessity is to allow the grief process to unfold. Make every effort not to resist it. Let it naturally play out. No one can tell you how long it will take.

And, you are not weak because you still cry and miss the deceased. It is common to tear up at various times through the years when a poignant memory is triggered. That is healthy. Don’t hold back the normal expression of emotion throughout your grief. Death changes us. We have to establish a new personal identity, and as we gradually heal, reclaim joy and enter the next chapter of life.

Each of us decides if and when we will be loss oriented or restoration oriented for the rest of our lives. Above all, remember that there is nothing wrong with you for having the feelings you have.