The Emotional Challenges of Having a Loved One in Hospice Care

When medical care cannot offer a cure for persons with life-limiting illnesses, hospice provides care, comfort, and support for them, as well as their families. The hospice team works together to make them comfortable and relieve their symptoms and pain for the entire length of their illness.

This end-of-life care can bring about feelings that professionals have termed “anticipatory grief.” When facing the eventual death of a loved one, these feelings are common … but not always discussed. Some may find it socially unacceptable to express the deep grief and pain they are feeling so they don’t receive the support that can help them.

Anticipatory grief can also be felt by the person who is dying and there are some coping skills that can help both during this painful time.

What is Anticipatory Grief?

Anticipatory grief is grief that occurs before death and can involve more anger, more loss of emotional control, and atypical grief responses. This can be related to the “mixed up” feelings of trying to maintain an emotional balance of hope and letting go.

Some people experience very little grief while a loved one is dying – they may even refuse to grieve because it might be interpreted as giving up hope. But for some people, the grief before the actual loss is even more severe.

Does Anticipatory Grief Help?

Grief during hospice care isn’t a substitute for grief and won’t necessarily shorten the grieving process. It does, however, provide opportunities for closure that people who lose loved ones suddenly never have.

The time in hospice care is a chance to reconcile differences and to give and get forgiveness. It is an opportunity to say goodbye in a meaningful way … to say, “I’ll miss you.”

The Emotional Roller Coaster

Some days can be very hard. Other days you may not feel these emotions at all. People grieve differently, but here are some typical emotions that those with loved ones in hospice care deal with:

  1. Sadness and Tears — You may feel sad suddenly and feel the need to suppress tears. Allow yourself to feel the pain. Be honest with yourself about the impending death and the loss of shared memories and dreams for the future.
  2. Fear, Anxiety, and Anger – not just the fear of death, but fear about all the changes that may occur with losing your loved one. You may also be dealing with your loved one’s anger.
  3. Loneliness – You may feel an intense sense of loneliness, especially if you try to suppress your feelings. Find a friend who won’t judge – someone with whom you can talk openly — and who will be comfortable with you as you communicate your emotions.
  4. Guilt – At the same time you long for your loved one’s suffering to be over, you may fear the moment of death. You may also be experiencing survivor guilt – that you will continue to live your life while your loved one will not. Talking honestly with a trusted friend or professional health care worker can help.

Other Ways to Cope

Understanding the grief you are feeling and the emotional challenges of hospice is helpful in coping. Here are some additional ways you can manage this emotional time and make the end-of-life journey meaningful for you both.

  1. Spend Time Together – Pull out boxes or albums of old photos and go through them together. Talk about memories of vacations or stories of relatives pictured. Ask about the stories behind each piece of jewelry in her collection. Make a video or audio recording where you ask about “how things were in the old days.” You can also spend time pampering your loved one with a manicure or massage or just by applying cream to hands, arms, legs, and/or feet. Read a magazine article or favorite book out loud. What you choose to do isn’t as important as the fact that you are just spending time together … even if that time is in silence.
  2. Journaling – Keeping a journal can be very helpful in the healing process. Here you can express feelings you might not be comfortable sharing with a friend. You can also record thoughts that you may later wish you had written down to remember and relay to others. Writing letters may also help with the sorrow you may be feeling. You can write to your loved one who is dying, expressing your thoughts and later read it or keep it for yourself.
  3. Take a Holistic Approach – Several holistic therapies help with anxiety and grief, including guided imagery, meditation, art therapy, music therapy, massage, and Qi Gong or Tai Chi.
  4. The Spiritual Path – Whether it is organized religion and prayer, communing with nature, or simply listening to music that is meaningful, can help you to create emotional balance during this time.

The emotional challenges of hospice can take a toll on family members. Many people don’t even realize that they are experiencing anticipatory grief symptoms and that there are people who can help with coping strategies.

Let Us Help

If you have questions regarding these or other concerns for the Aurum Network, contact us or call 978-282-9551. To locate a community within the Aurum Network, use our facility locator tool.

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