“He’d lived long enough to know that everyone handled grief in different ways, and little by little, they all seemed to accept their new lives.” -Nicholas Sparks
After Mom was officially diagnosed with PSP, I set about doing what I do- reading and learning everything I could about the topic. While this method works for me, I do not recommend this path to all loved ones who are in the PSP journey. Watching videos of people with late-stage PSP was incredibly hard, I curled up in a ball in my comfy chair, a box of tissues beside me, computer on my lap and tried to wrap my head around what was coming- and it seemed almost impossible. But, those videos haunted me and began to prepare me for the future. They also triggered my anticipatory grief.
What is anticipatory grief?
Anticipatory grief is grieving that begins before someone dies. In my case, the grieving began with the label of PSP and understanding that it is terminal, progressive, and non-curable. The symptoms of anticipatory grief vary from person to person, but, these symptoms are generally the same as those experienced after death. In my case, the feelings of anticipatory grief are complex and interwoven into the grief I feel watching my mom lose various abilities.
What do I need to know about coping with anticipatory grief?
- No two people will have the same experiences! While I have experienced profound anticipatory grief, Medicine Net points out that not all people have symptoms of anticipatory grief. In other cases, anticipatory grief might have the same symptoms of depression whereas for others the senses of loss might manifest as anger.
- Use your support system! I have a diverse and expansive support network of people which have helped me to process Mom’s death. In addition to my friends and family, I found a PSP support group online which has been critical to helping me to both process and learn about PSP. The Cure PSP organization has on online find support tool and Grief.com offers a searchable list of support groups throughout the United States. Finding support can be critical to processing and coping with anticipatory grief.
- Be gentle with yourself! When caring for someone with a terminal illness there can be days when it simply does not feel like enough. Between normal life responsibilities, care taking, and grieving it can be easy to slip into destructive behaviors or harmful patterns of negative self-talk. In these moments, learning to recognize the behavior and reminding yourself to stop and breath is critical.
- Give yourself the time! It is okay to feel exactly how you are feeling. Take a minute (or longer) and allow yourself to feel. Instead of choking back the tears give yourself the gift of allowing them. If you are feeling angry allow yourself to be angry. Stomp your feet, yell, tell God to “fuck off” if you have to. Then after feeding the feeling for a brief time, get up and get moving! Do something, anything!
- Seek professional help if you need to! Anticipatory grief can be overwhelming and can become increasingly complex. Some people find that a professional can best assist them through this time. If you find your grief becoming overwhelming or impairing your ability to function, then it might be helpful for you to see a therapist or join a professional support group.