Chapter 1: What am I feeling?

Common reactions

I've been there
Valerie remembers shock and disbelief when her daughter died.(3:22)Video transcript

I'm in shock"I am stunned and emotionally numb. Last month we were on the road to a cure, and then two weeks ago we were told his cancer had spread and the end was very close. I know he is dying, but I can't quite believe it, no matter what people say."

Shock is a common reaction to the coming death of a family member or friend. You may feel detached from yourself or numb. The approaching death seems unreal. You might resist accepting that the person will die soon. Some people hold onto this denial for a long time.

Feeling shock can be a way of protecting yourself until you are better able to withstand the intense emotions you are experiencing.  
I'm tired all the time"I have been caring for him at home for many years. We have been in and out of hospital so many times. I've never been so exhausted."

When someone close to us is diagnosed with a serious illness, we are often confronted by a health care system we do not fully understand. There are a thousand things to manage like appointments, medications and keeping family and friends “in the loop.” We may feel intense pressure to do and say the right things and not make mistakes. It is easy to become tired from:
•The stress of supporting the dying person.
•Coping with their pain, anger or confusion.
•Trying to resolve long-standing conflict with this person.
•Making important medical decisions.
Nothing makes sense"He is so young, always took care of himself, exercised… and he is a good and decent man. Why did he get cancer? What did we do to deserve this?"

Life is easier to manage when it makes sense. As we try to wrap our mind around death and dying, death challenges us because it doesn’t always make sense. It’s natural to be angry about how unfair life can be. You may no longer feel as safe. You may rage against the random, unpredictable nature of life.

Although it may be hard to believe, over time you may realize that certain events in life can be made sense of, and others can’t. At some point, you will begin to shift your focus from “Why?” to “Now what?”
I'm crying all the time"I can't seem to stop crying. It is starting to scare me."

Strong feelings often come in waves before and after the death of someone you care about. You may:
•Cry suddenly and uncontrollably.
•Despair when imagining life without the person.
•Grieve for plans lost due to the illness.
•Worry about the moment of death.
•Feel very angry.
•Cling to unrealistic images of the end of life from movies.

These feelings can be draining, frightening, and difficult to manage while attending to the emotional needs of the person who is dying. Remember that waves of strong emotion are normal, and while they usually lessen over time may still occur well down the road.
I'm not dealing with this well"I shouldn't be feeling this way. I should be dealing with this better."

When someone you care about is dying, you may have a strong emotional reaction to your own feelings.

It is very common to feel shame or disappointment with yourself for not measuring up to some imagined ideal.

Go easy on yourself. You are doing the best you can in an extremely difficult situation. Things are hard enough, but when you start beating yourself up, they can get even worse. Remember that there is no right or wrong way to feel. The feelings you have are a natural response when someone close to you is seriously ill.
I feel guilty"He really wanted to die at home, but I just couldn't manage anymore. I am so relieved he has been admitted to hospital, but I feel guilty I couldn't honour his wish."

You may feel guilty for wishing the person would die. Be gentle with yourself. A part of you may simply need an intense period of stress to end.

If you were not present during their illness, you might now feel guilty that you were not more available.

If you are caregiving, it is hard work. Despite your best efforts, it is normal to look back and feel regret.

Doing the best we can to support someone at end of life is a great achievement. It is enough.
My mind is racing"I am so jumpy, I can barely sit still. My mind starts racing and keeps me up at night."

Feeling helpless is a normal part of caring for someone at the end of their life. It can make us worry and panic.

Usually, we respond to anxiety and worry by either avoiding a stressful situation or trying to control it. Both can make you feel irritable and isolated, and lead to arguments with family and the health care team.

You might have trouble sleeping or find yourself sleeping too much.  If your anxiety starts to impact your daily life, ask for help from a counsellor or your doctor.
I accept it now"The hardest part has been accepting that he is dying."

Coming to terms with the coming death of someone close to us is difficult. You may find that you go between knowing this is real to a sense of “This can't be happening.”

When you accept that the person is dying, your hope for a cure may change to hope for other things like:
•Fulfilling some plans, such as going home one last time.
•Repairing bruised or wounded relationships.
•Talking about fond memories you made together.
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