Chapter 3: Recognizing your grief

Missing who they were

The palliative care expert says
Kelli Stadjuhar, researcher and nursing professor, speaks about the challenges of being a caregiver.(3:22)Video transcript

My mom used to take pride in her special dishes, pickles, and jams. It breaks my heart this isn’t part of her anymore. She still talks about it in the present, but it’s been a long time since she’s been able to do any of that.

The changes to our marital relationship were hard: the lack of cuddles, the lack of love; the loss of reciprocity and affection over such a long time.

We miss our dad, and my mom misses her husband. It has become harder to talk to him, and our relationship has changed.

The effects of progressive illness can sometimes cause changes to the person you care about. Changes to personality, interests, or abilities, for instance, can make it difficult to recognize or relate to the person.

With some people, although their heart beats and their body is present, the essence of the person that made them “who they are” can seem to be gone. You may feel like they are no longer the person you once knew.

Their absence and presence at the same time can be confusing and can lead to mixed feelings. For example:

  • You may not want to spend time with them but feel you must.
  • You may love the person but not like the changes in them.
  • You may be frustrated and also sad that they can’t communicate with you.
  • You may grieve and feel guilty because the person is still alive.

All of these thoughts and feelings compete with the energy required to care for someone who may not relate to you in the same way or even recognize you.

What may help

  • Recognize that your feelings may be complex or conflicting, and remind yourself that this is normal.
  • Explore new ways to relate to the person, such as reading, drawing, or listening to music.
  • If the person will accept it, brushing their hair or holding their hand might give you a sense of still being connected, though it may not be in the same way as before.