FACING LOSS
• Shock: This phase can be experienced as numbness or the inability to think straight. For the care partner of a person with PSP, CBD or MSA, it is often described as a sense of disbelief that after months or years of adapting to life with the diagnosis and providing care, the person died. This emotion is often contrary to the logic that they knew the person would eventually pass away.
• Protest: This phase is characterized by acknowledging the deep sorrow of the loss and consequently feeling anger, guilt, sadness and fear of what’ s next.
• Feeling of Disorganization: This feeling can be experienced as depression, loneliness, confusion, loss of identity and uncertainty of how to move forward. A care partner may feel relief that their loved one no longer has to live with the symptoms and challenges of PSP, CBD or MSA as well as relief that they no longer have to provide care. There can then be guilt over this relief. Many people describe experiencing seemingly opposite emotions— and trying to make sense of them. No matter what, this phase can be a very vulnerable space.
• Reorganization and Redefining of Self: In this phase of the grief cycle, a person experiences a gradual discovery or rediscovery of routines as well as a new sense of self. This does not mean they are no longer grieving and that everything feels right or OK, but rather that they are able to feel they are moving forward and finding grounding in a new normal.
Give yourself permission to experience and feel all of the emotions and thoughts that can arise in the grief process. Know that just as it can be hard to accept a diagnosis, it can be hard to arrive at a place of acceptance with the loss of someone you cared for and about. Expect for memories or important dates, such as holidays, birthdays and the anniversary of a person’ s passing, to be triggering and bring up renewed feelings of grief. Memorable occasions can equally be processed with fondness and gratitude. Grief is complex.
Making a New Life After the Caregiving Role
Inside the Grief Cycle is the resolution, which the theory calls Recovery. It means learning to live apart from and in spite of the loss. It does not mean that you are over the loss by any stretch, as it will likely always be something you carry and process. To help yourself arrive at this place of recovery, try to:
• Take Care of Business: Give yourself time before plunging into the tasks of sorting through belongings, settling finances and passing on personal items. You may want to delay making major life changes soon after the death, such as moving or leaving a job. At the same time, take the steps you need, which may be very practical, to make sense of your experience and move forward. How and when you take care of business, and what it means for you to take care of business, will be unique to your coping and needs.
• Take Care of Yourself: This step looks different for different people, but ultimately, it is a matter of intentionally attending to your own health and well-being. Nourish yourself, make sure you are hydrated, rest when you feel tired, exercise and meditate. It may have been difficult to find times to do these things when caring for your loved one. Accept offers of companionship and help from others. Rediscover what you enjoy and discover newfound joys.
• Interact with People: Maybe you want to or need to reconnect with people that you may not have seen frequently during your days and years of providing care for your loved one with PSP, CBD or MSA. As you move through the grief process, it is important to build and turn to your support system. Reach out to a person in your life who will listen to you and support you in this new stage of your life.
• Develop Daily Routines: Take time to figure out how you might want to spend your time now that you are no longer providing care to a person with PSP, CBD or MSA. Take small steps with the goal of establishing new routines and interests, or perhaps rediscovering those from before your caregiving role. Structure at least a few days a week around a particular activity, volunteer role or other responsibility. You may want to take up a new creative endeavor, such as writing, gardening or quilting, as an outlet for your energy.