The experience of caring for a person with dementia can be as varied as the humans holding the role. However, with the progressive, degenerative nature of dementias, caregiver stress is a very real concern. Many caregivers will feel stress, overwhelm and a unique kind of grief coined by Pauline Boss, PhD, called ambiguous loss.
Ambiguous loss is a loss that is unclear, has no resolution and has no predictable ending or closure. Boss writes, "when a loved one is lost only partially, the ambiguity coupled with the loss creates a powerful barrier to both coping and grieving. When you are living with an illness or condition that has no cure, hope lies in your perception and ability to change. Therein lies a caregiver's window for hope."
Here are some strategies to consider:
- Make a conscious decision to be okay with unanswered questions or problems that cannot be fixed. They are out of your control.
- As your relationship becomes more one-sided, connect with others that can be fully present.
- Acknowledge your sadness as it comes and grieve along the way.
- Feeling fear, anger and guilt are normal. Do not keep these feelings to yourself. Share them with supportive friends, a support group or a health care professional.
- Ask for help and accept it. Let others show how much they care. Create a psychological family of people you can depend on.
- Know that you are doing the best that you can.
- Live in this moment, but allow yourself to hope and dream for a future of possibilities.
- Your role as a caregiver continues to change as your person does. Give yourself permission to take care of you while caring for your person.