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Intertwined hands where one is just a dotted outline representing loss in the relationship

Coping With Double Loss

Being a caregiver for a loved one with Parkinson’s can be filled with meaning, challenge, and eventually heartbreak. In listening to my patients over the years, both at the hospital and in my private practice, I’ve heard the double loss that occurs when death comes, the loss of the person so deeply loved and the loss of the identity as the caregiver. How does one move forward, not to be confused with forgetting or moving on, in the face of such great loss? While there are no easy answers, or one individual plan that will work well for all, there are some suggestions for considering how to rebuild a life with vitality. Below is a case example that illustrates such ideas:

The double loss

Sarah* greeted all who entered her room with a soft smile and a warm hello in spite of being admitted to the hospital for Takotsubo cardiomyopathy, a type of heart problem that is brought on by extreme stress, commonly known as Broken Heart Syndrome. Her care team had ordered a social work consult after learning that Sarah had lost her husband one week ago to complications of Parkinson’s disease. I was struck by her gentle voice, calm presence, and willingness to openly talk about her experience as a care partner for Carl*, her husband, for 25 years.

Since his initial diagnosis, Sarah shared she had been present at virtually all medical appointments, shared in decision making, assisted with all daily tasks including bathing and toilet in towards the end all with some additional limited support from her children and hired in-home nursing care. She discussed how she had never been able to imagine a life without Carl, and while his death was expected and gradual, giving her time to prepare for his loss, she could not help but feel heartbroken, lost, and out of control. She remarked that she had not only lost her best friend and life partner, but she had also lost her sense of meaning and purpose no longer caring for him.

Establishing a plan

In sharing this insight, Sarah questioned her ability to function in her life as it now existed. During our encounter, she asked openly “What am I going to do with myself?”; “Who am I if not a wife and caregiver?”. At both an ending and a beginning, Sarah was reflecting on common existential questions that had no easy or immediate answers. However, as we spoke, and the space was gently held, a plan started to develop that may be of use for others in such a situation or preparing for such a loss. Sarah and I worked together to create both an immediate and longer-term plan.

First, we discussed her support network, which can commonly consist of family members, friends, religious communities, support group members, and neighbors. Sarah was a member of a fairly large and supportive Church that she reported already was arranging a meal train for her given her loss and now medical issues. Her support group, which she had been attending for 10 years, also knew about her husband’s passing and a few members had reached out to her. I encouraged Sarah to be sure to return their calls even if she did not feel like connecting with other right now, to protect herself from isolation which is common, and in small doses necessary, when coping with grief. We discussed her living environment, which previously consisted of multiple supports tending to her husband and her needs and how she could now start to consider what type of living environment may be useful for her. As part of a long-term plan, we discussed having conversations with her daughters about staying where she is versus moving in with them or moving into a more supported facility like an assisted living.

Continuing our conversation, we reviewed basic self-care principles that can be so difficult to practice after acute loss, such as eating meals on time, going to bed and waking up at similar times, attending required medical appointments, make and follow structure during the day and showering/freshening up. Sarah admitted feeling some embarrassment for her heart syndrome, blaming herself for not handling the loss well, to which we worked on challenging those thoughts and normalizing her grief. I provided education for her on the concept of double loss, including losing her identity as a caregiver. Sarah readily grasped this concept and planned to discuss it further with her support group friends. We reviewed long-term goals Sarah may consider such as volunteering, spending time with her grandchildren, and practicing her religious faith, all from which she derived a sense of meaning and connection. In losing the role of being a care partner, it can be useful to ask the question of “What can bring my life meaning now?” And “How do I wish to give to the world and my community around me?”. This question can sometimes take some time and practice for answers to evolve and can often be hard to sit with immediately after loss, hence this being part of Sarah’s long-term plan.

A unique journey

While our meeting was brief, we covered a lot of ground, unearthing the challenge of this dual loss, how to manage basic self-care, how to build and/or use a support network, how to draw upon existing spiritual beliefs, and how to transform meaning out of losing the identify as a care partner. Sarah ultimately decided to consider engaging in short-term grief counseling, continue with her support group, spend more time with her family, and volunteer at her local hospital as a greeter. Other strategies that some caregivers may find helpful include learning and practicing meditation, including loving-kindness and self-compassion meditations, joining a grief group either general or PD specific, spending time in nature, journaling, reading books about loss, online support groups, and rituals to honor and remember your loved one and the devotion of caregiving.

Grief, especially after caregiving, is a time to honor, a journey that’s unique for each person, and one that deserves to be met with great compassion. No two experiences will be the same and yet there are some common ways to cope that can gently soften the pain and sadness of such a loss.

*Names and details changed to protect patient confidentiality.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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