8 Unexpected Emotions at a Child’s End-of-Life
When a child has died or is dying, there are certain emotions that we expect, especially a bone-crushing sadness, the depth of which cannot even be explained using modern physics. In reality, the roller coaster of emotions you will feel is far more complex, and many types of emotions you may experience are surprising and unexpected. Eight of these unexpected emotions include Numbness, Relief, Guilt, Anger, Loneliness, Jealousy, Fear, and Confusion. You may not feel all of them—or any of them. You may feel multiple ones simultaneously. You may feel one today, and a completely different one tomorrow, or even in two hours. It is all part of the roller coaster of child loss.
The primary emotion I experienced prior to my daughter’s death was numbness. I literally felt nothing. I had the vague sense that in the back of my heart were a thousand emotions ready to roar out, but most days I just did what was needed without emotion or thought.
I experienced numbness in part because I was so busy trying to keep my daughter alive that I literally did not have enough time or energy to focus on my feelings. But the reality is that many of us are forced to turn off our emotions as a protective strategy to get through the day. The only way we can cope and function is to refuse to feel. Numbness is not a helpful emotion in the long-term, but in the short-term it can be extraordinarily necessary.
The numbness persisted for months after my daughter died, but it is slowly lifting. The rush of emotions is in some ways refreshing, because you feel a whole lot more human when you start allowing your emotions to return again. But it can also be overwhelming and frightening.
If your child is as sick as mine was in the last two years of her life, you will probably feel relief when he or she finally passes away. This emotion may scare you at first, because we usually associate relief with positive experiences, and you may even feel ashamed for experiencing it.
The relief may come from finally knowing that your child is no longer suffering, no longer struggling, and no longer in pain. But the relief may also come from a sudden lifting of responsibility from your shoulders. You may no longer need to be providing life-or-death nursing care for your child 24/7, spending weeks or months in the hospital, or dealing with nurses and therapists. This can be a great relief to you personally, and one that will likely lead you to the next emotion, guilt.
Almost everyone I know who has lost a child feels guilt in some way or another. In my case, I felt guilty because my life suddenly became so much easier after my daughter died. I felt guilty for being able to sleep all the way through the night instead of staying up and doing her medical procedures. I felt guilty for having so much less to do, and so many fewer battles to fight.
Many people also feel guilt because they think there must have been something that could have saved their child, if only they had tried some new therapy, gone to some super specialist, or tried some new medication. In some cases, parents may have to make decisions about withholding medical treatment at the end-of-life, such as turning down intubation or dialysis, and may feel guilty knowing their decision—even if it was the right decision—ultimately contributed to their child’s death.
Guilt can be especially painful on the soul, and of all the emotions, it is probably the least useful in child loss. Even if there is absolutely no reason to feel guilty, you will likely find one or two reasons.
Just as most people experience guilt, many feel anger as a child nears the end of his life and in the months after. Sometimes this anger is at God or another spiritual being for letting this happen to you and your family. The anger may also be directed toward a nurse, physician, or hospital if they were not supportive. You may have anger towards family members or friends who say insensitive things or just don’t get it.
In some cases, you aren’t angry at any one particular thing, but just angry at the world in general, and every little thing sets you off. You have been dealt the worst blow imaginable, and anger is understandable. Just be careful what you do with your anger, as it can be used for either the betterment of yourself and society, or it can spiral out of control and consume your entire being.
About two weeks after my daughter had died, all the friends and relatives who had come for her celebration of life left and returned to their homes. What struck me the most at this time was the sheer emptiness and loneliness I felt. The house was so quiet without my daughter, her machines, and her nurses. It was literally dead silent, and there was not one person left in the house to talk to.
Loneliness may come from the intense pain of not having your child physically with you. It may also come from the emptiness of your child’s room or house. I also experienced loneliness because I simply did not fit in anywhere any longer. I wasn’t really a part of the special needs world anymore, but I was far, far away from the regular parenting world as well.
Jealousy often stems from the unanswerable “why me?” question. Why didn’t this happen to someone else instead of my family? Seeing other kids living day after day when your child is gone can make you jealous of their simple normalcy. You may even feel jealous of your fellow special needs parents because you aren’t really in that “club” anymore.
Jealousy often leads to sadness and loneliness, and is most often rooted in anger and grief. It’s also one of those emotions that in this instance tends to dissipate quickly with time.
Ever since my daughter died, I’ve been extra afraid about everything else, especially related to my other two children. Even though they are healthy and don’t have the same condition their sister did, I worry that they will become sick and die, too.
This emotion actually makes a lot of sense. The thing that is never supposed to happen—a child’s death—has actually happened, and you no longer know what other supposed universal truths don’t really apply. The result of this uncertainty is fear, which seems even more powerful because it is based in the reality you just experienced—the death of your child.
Like anger, a bit of fear can be helpful, but don’t let it consume every aspect of your life, because you and your family will be unable to live through fear.
I was so confused after my daughter died. Not only was I experiencing a roller coaster of emotions, but I was also tremendously confused about where I now fit in the world. Like many parents of children with complex medical issues, I spent almost all my waking hours caring for my child and coordinating her care. I gave up my career, my social life, and pretty much everything to maximize her quality of life and keep her alive.
After she died, all of that disappeared. Who was I now? What was my job? What should I be doing with my life? Where do I fit in?
This uncertainty continues to this day. It’s not something you can sort out overnight. I’m trying to take it slowly and feel my way through the confusion.
Handling these Emotions
How are you supposed to handle these emotions? I personally think it is important to allow yourself to experience them without concern that they are what you “should” be feeling. Many will come and go and not trouble you much. Others may become overwhelming, and if that is the case for you, it is probably best to see a therapist, counselor, or religious advisor.
Other things that can help include journaling about your feelings, meeting with others in an online or in-person grief support group, or working with your palliative care or hospice program to find additional support services. It will take time—a very long time—and some of these emotions will stay with you forever. The best we can do is learn to cope with all of our emotions, no matter what they are or when they occur.