Grief for a Parkinson’s care partner does not begin when your loved one with Parkinson’s dies; it changes shape. To some degree, grief has been a familiar emotion from the point of your loved one’s diagnosis with Parkinson’s disease (PD) and as their disease progressed.
As a care partner you grieved alongside your loved one as they faced the difficult parts of PD, while also offering them encouragement, hope and support, where you could. You may have cheered your loved one on when they engaged in Parkinson’s exercise classes and support groups. You most likely helped your loved one advocate for their best care, build a PD care team, and manage symptoms and medication. You learned all you could about PD and searched for helpful resources. You worked through the challenging moments, looking for ways to bring small joys into your loved one’s life, to remind them of the little pleasures that make the hard days easier. You saw your loved one for who they were as a whole person, honoring their personhood and identity as being so much more than just their diagnosis.
During your loved one’s journey with Parkinson’s, you developed a whole new skillset: being a care partner in addition to being their significant other, child, sibling, parent or friend. Now that your loved one has passed away and you are navigating this new shape of grief, consider how your care partner skillset may help you at this tender time.
Here are eight ways to draw upon what you already know from caregiving:
- Just as you probably encouraged your loved one to do, allow yourself to grieve. Try to maintain hope that you can make it through this.
- Do what you can to treat your body kindly, as your body holds your grief and needs to heal, too.
- Visit your primary care doctor for a check-up if you have not been able to tend to your own health lately.
- Learn what you can about grief. See our resources below.
- Think about who can be on your grief care team, which could be any combination of informal and formal supports that makes sense for you and may include: family, friends, neighbors, members of your spiritual, civic, or virtual communities, a bereavement counselor or social worker, other bereaved care partners or a support group.
- When you feel ready, ask your grief care team to help you reconnect with life outside PD and to help you find the little pleasures that make these hard days easier.
- Remember your loved one for who they were as a whole person. Acknowledge the gifts they brought into your life and ponder what values of theirs you want to bring with you into your future.
- Be gentle and kind to yourself.
Every care partner had a unique relationship with their loved one with PD and offered them support in unique ways, which means every care partner will have a unique grief journey.
Parts of your care partner experience may have looked nothing like what you would have hoped for; trust that you did the best you could with the circumstances you were under. Try to avoid comparing your grief experience, as no two people grieve in the exact same way. If it feels right for you, stay active with the Parkinson’s community you have been part of, as other care partners can benefit from your expertise and lessons learned over the years. Otherwise, allow yourself to create distance from the Parkinson’s community if you need to.
Remember to take the advice from others that helps and leave behind what does not feel right to you. Give yourself the time and space to grieve at your own pace and in your own way.
- Center for Loss: The Mourner's Bill of Rights
- National Institute on Aging: Mourning the Death of a Spouse
- CaringInfo: Coping With Grief and Loss
- What's Your Grief
- Care Partner Program: Ambiguous Loss
For more information or questions on grief and caregiving contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).