From a person newly diagnosed who feels a heavy dread from their uncertain future to someone distraught about their changing abilities, the Parkinson’s Foundation Helpline occasionally receives calls from people living with Parkinson’s disease (PD) experiencing a level of despair that has become unbearable.
People with Parkinson’s are at an increased risk of suicide. When asked, up to 30% of people with PD have thought about it. Why suicide?
“For some, the thought of suicide may feel like an option, a sense of control in what seems like their only way out,” said a Parkinson’s Foundation Helpline specialist. “They may feel like they would be doing their loved ones a favor. Isolated individuals may feel no one would really notice if they died, while others may feel they are sparing themselves from a poor quality of life.”
Welcome the Discomfort
Suicide is never the only option. It is also a subject that goes unacknowledged since many find it uncomfortable. It is natural to experience fear when a loved one brings up the topic, however that feeling of discomfort can lead to silence, leaving the person with the suicidal thoughts to feel alone — when they need support the most.
What if allowing an uncomfortable and uncertain conversation to unfold meant your loved one with PD felt less alone? If you are the person thinking of suicide, what if you felt like you could have an open and honest conversation with your loved one about your thoughts?
In ideal world, every person with Parkinson’s who is thinking about suicide and every family member or friend would feel comfortable enough to candidly address their thoughts and fears. However, most people feel unprepared or don’t know how to talk about it.
You do not have to do this alone. If you or a loved one is thinking of suicide, contact the National Suicide Prevention Lifeline, available 24 hours a day at 1-800-273-8255 or virtual chat. If you think they may harm themselves immediately, please call 911.
Connecting to appropriate support to help you or a loved one stay safe from suicide is essential. If present, depression or other mental health concerns should be treated by your care team and could involve psychotherapy, medications or both.
Envision a Way Through
Establishing safety from suicide does not necessarily mean the suicidal thoughts have completely stopped. Thoughts and intentions can change from day to day, so continue having candid conversations and accessing help from trained professionals as needed.
If you or your loved one has decided to move forward with a commitment to safety, what comes next?
Find A Specialist
In some cases, better managing PD symptoms can provide relief from despair. Partner with a Movement Disorder Specialist who you trust. A PD specialist can help you optimize medication options and explore surgical options, if recommended. Seeking additional specialists like physical therapists, occupational therapists and speech language pathologists and licensed clinical social workers or neuropsychologists with PD training can also help you manage symptoms. Talk to your care team about depression and suicidal thoughts.
Try other forms of therapeutic support: music therapy, dance/movement therapy, art therapy, massage therapy or acupuncture and other complementary medicines. Engaging in counseling, Parkinson’s support groups, exercise and wellness programs can also help you manage your PD symptoms. Explore palliative care as an added layer of support.
End of life planning is more than establishing who will handle your affairs after you die. End of life planning includes making plans for what could happen before we die, allowing us to assert some control over one’s future and one’s death.
Arranging a living will and durable powers of attorney for healthcare and finances, partnering with your doctor to sign a portable medical order (POLST/MOLST), and/or completing a Five Wishes advance directive are all ways to plan ahead. This effort can also bring peace of mind and comfort to our loved ones. Learn more about planning ahead.
Death with Dignity / Assisted Suicide
People with Parkinson’s may think of the challenges or complications that can occur during late-stage PD and decide they prefer dying on their own terms. Some Helpline callers have inquired about assisted suicide or assisted dying laws. According to Death with Dignity, “Death with dignity laws allow qualified terminally-ill adults to voluntarily request and receive a prescription medication to hasten their death.
As of September 2019, aid in dying statutes are in effect in California, Colorado, District of Columbia, Hawaii, Maine, New Jersey, Oregon, Vermont and Washington. More information about Death with Dignity can be found on their website or by calling 503-228-4415. The Parkinson’s Foundation acknowledges that assisted dying is one among many end-of-life options that some might consider.
Re-establish Your Identity and Meaning
Our identity, sense of self and understanding of our purpose or reason for living can be challenged when we feel disempowered, disheartened or in despair. People at any point along the journey of PD may struggle with these challenges. Try these approaches:
- Turn to a family member or friend, support group member, counselor or spiritual leader for support with existential questions.
- Seek ways to reconnect with the parts of your identity that are not tied to your diagnosis and symptoms.
- Help or mentor other people with PD. Offer to make telephone check in-calls to members of your exercise class or support group. Utilize your experiences to answer questions posted on online PD forums.
- Volunteer outside the PD community. Many local senior service organizations or grief support agencies look for volunteers to help with telephone-based support programs. Visit a site like VolunteerMatch.
Anyone who has considered suicide has their own reason for doing so and their own journey to find hope again. If you have been there, share what has helped you. Consider submitting a My PD Story as we continue to open the dialogue on this under-discussed topic.