FACING LOSS
Facing Loss & the End of Your Caregiving Role
Because of the nature of progressive supranuclear palsy( PSP), corticobasal degeneration( CBD) and multiple system atrophy( MSA), people living with the diagnosis and others close to them alike experience a variety of changes and losses over time. These can be small or big, and they are often a combination of emotional and existential responses( such as loss to your sense of self or to the person as you once knew them) as well as tangible losses( such as no longer being able to drive a car). For those living with a neurodegenerative diagnosis, anticipatory grief over what is to come is also common. Members of our community have shared with us that these experiences are not always understood or validated by others and, as a result, can feel ambiguous. Feeling grief over the course of an illness is normal and real.
The big loss, of course, is the death of a person. Despite having already grieved along the way and having emotionally, and sometimes logistically, planned ahead for the person’ s death, death can still bring about many raw and unanticipated thoughts and feelings. While all grief experiences are personal, grieving someone who died with PSP, CBD or MSA is often described by our community members as unique. A lot changed— from diagnosis through death— in a relatively short period of time. For many, days and energy in that time were spent attending to their loved one’ s care and needs. One PSP care partner once described it to us as“ a fast-moving train” that she“ could not get off of,” and said she had to spend a lot of time wrapping her head around that after her husband passed away. Additionally, there is the element of not many people having heard of the illness someone’ s loved one lived and died with. These facets are layered on top of how the death of the person you were caring for brings with it an additional loss— the end of your caregiving role. This transition marks the beginning of yet another new and uncharted path in your own life.
CurePSP recognizes that grief is individual and dynamic, and we want to be here for you in this new chapter. Through this resource, it is our hope to offer information and support as you understand your grieving process and map a new course for yourself. Every person moves through these stages at their own pace. The information and suggestions contained here are meant to be general guidelines.
CurePSP also offers a bereavement support group and a bereavement journal. We invite you to visit www. psp. org / bereavement-resources to learn more.
Moving Through Grief
The grieving process is unique to each person and depends on many factors, including how a person died, cultural and religious beliefs, a person’ s support system and how they reflect on and make meaning from their experience.
Grief progresses in ways that are not necessarily sequential or linear. Nevertheless, each person is likely to pass through similar phases of grief and to experience common thoughts, questions, challenges and emotions. Perhaps most well-known for her work in this field, in 1969, Elisabeth Kübler-Ross was the first of many subsequent theorists to posit a framework for the stages of grief. Her theory is comprised of five stages: Denial, Anger, Bargaining, Depression and Acceptance.
A more recent theory called The Grief Cycle suggests grief is experienced in a more dynamic circle( rather than in stages), which can include: