Dealing with end of life emotions is part of being a caregiver. At the end stages of a terminal illness, it can become clear that regardless of the best care, attention, and treatment, the person you are caring for is approaching the end of his or her life.
Palliative caregivers may also find themselves experiencing many new and conflicting emotions.
While many people understand end of life care as alleviating pain and physical discomfort, end of life care also means helping the dying person deal with mental and emotional problems, and being aware of how this affects your emotional state as a caregiver.
The emotions of someone in the last phases of life
People who are dying can experience a wide range of end of life emotions, many of which you have never seen before or are uncharacteristic of their personality.
Some of these emotional changes at end of life may include:
Anxiety or Uneasiness – End of life anxiety is to be expected where a person in care may feel uneasy about their future and the prospect of dying.
Anger – End of life anger is a common experience where the person in care may exhibit behavior such as yelling, sarcasm, and hostility (amongst others). The cause of anger may be related to an illness, failure of the medical treatment, or the person may simply feel frustrated with the situation they are in.
Guilt – Sometimes people feel end of life guilt thinking that they have become a burden to family and friends, and may therefore blame themselves for requiring care.
Embarrassment – As palliative care increases and the dying person is dependent on others, they may experience feelings of embarrassment.
Sadness – it is normal for the dying person to feel sad as they think about life after their death or that they are unable to do activities that they enjoy as a result of their current illness (this may cause them to also feel lonely). It is important to remember that end of life sadness does not always mean that a person is depressed.
Although these end of life emotions are common and normal, it can be difficult for you as a caregiver to witness and experience them.
Sometimes it can help to encourage the dying person to share their feelings and what is happening to cause these end of life feelings. This kind of open communication is helpful in understanding and resolving problems. However, it is also important to understand that sometimes there is not an answer to every problem.
End of life emotions of the caregiver
Palliative caregivers may also find themselves experiencing many new and conflicting emotions. While some caregivers find it easy to cope with these feelings, others may find them extremely difficult to deal with and sometimes even debilitating.
Here are some common end of life emotions you may experience as a palliative caregiver:
Grief - Grieving the loss of someone can begin long before the death happens. This is called end of life anticipatory grief. During this time you may feel intense sadness, and mixed emotions about the death. There may be good days where you feel ready for the person you are caring for to die. Other days you may feel overwhelmed and you need more time with the person you are caring for before letting go.
Guilt and Regret - You may feel a sense of guilt or regret for what you may or may not have done when the person was well. You may also feel resentment or regret for what the person you are caring for did or did not do for you. Although you should not ignore or dismiss these feelings, try not to dwell on them. At some point, you may wish to seek support or counseling to assist you to work through past emotional issues.
Feeling Angry - Many caregivers experience anger when dealing with end of life caregiving. Give yourself permission to be angry. Your anger may be caused by many things. For example, you may feel frustrated with the lack of understanding from family and friends. Some caregivers report feeling angry that some people were supportive at the time of diagnosis, but were not supportive at the end of life. You may also feel angry with health care providers. You may feel that they do not know what it is like for you. Your anger may lie with members of your family (why aren’t they helping more?), or with the dying person. Remember, end of life emotions such as anger will pass, and that it is only one piece of a much bigger picture.
Feelings of Peace – Many caregivers are surprised to realize that they still find opportunities to laugh. Many caregivers report that there is a great peace that comes over them amidst the challenge of being an end of life caregiver. This peace may come in knowing that you are helping a person at the end of their life to be more comfortable.
Addressing your emotional needs in end of life care is also part of the process and while this can be a difficult time, it can also be a special time filled with precious moments and rich memories.