I received a message on my blog from Linda, a leader of a support group for care partners. The following is an excerpt:
Linda: There has been one recent suicide of a caregiver's loved one which has raised some questions not found in the textbooks and certainly not encouraged to talk about with most of their doctors. “It is depression, here is a pill I prescribe.” My groups want to know: "What do I do/say when my loved one indicates he/she doesn't want to go on?" and “How do I react at that moment?"
Kate: Thank you for your thoughtful question, Linda. The topic of depression and suicide is indeed a sensitive one in the Parkinson’s community, and some doctors might be reluctant to discuss this topic at your appointments.
I’ve been fortunate to NOT have experienced depression during the 17 years since being diagnosed with Parkinsoon’s (occasionally a blue day and yes, I definitely have anxiety, but I am not aware of depression). However, a new study sponsored by the National Parkinson Foundation, surveyed 5,557 Parkinson's patients at 20 research centers worldwide and found that 61% reported experiencing depression. It’s not a reactive depression that comes from having been diagnosed with a neurological disease like Parkinson’s, but it’s a major depression that results from a change in brain chemistry from a loss of serotonin. Major depression cannot be gotten over simply with a strong will or trying to “tough it out.”
Depression is often underreported due to the social stigma attached to it. People with depression are afraid that others will label them as weak, lazy, crazy, lacking in will power, having out-of-control emotions, a danger to others, defective, whiney and making excuses and/or antisocial.
Depression can be seriously detrimental to people with Parkinson's if it prevents them from staying socially connected or from exercising to help improve their motor symptoms.
How do you respond when your loved one expresses that he/she doesn’t want to go on living?
What to Say
“I can’t imagine what you are going through. Would you tell me more about it?” Then really listen.
“I will miss you terribly if you take your own life. I can’t imagine living without you.”
“An antidepressant won’t cure Parkinson’s, but it would likely help reduce and manage some of the symptoms of your depression.”
“Are you considering suicide?” (This won’t put ideas into the partner’s head but will allow him or her the opportunity toexpress feelings.)
“You are not alone in this. I’m here for you.“
“You may not believe it now, but the way you’re feeling will change.“
“I may not be able to understand exactly how you feel, but I care about you and want to help.”
“When you want to give up, tell yourself you will hold off for just one more day, hour, minute — whatever you can manage.“
What NOT to Say:
“Ending your own life is not an option.”
“Snap out of it.”
“There are illnesses far worse than Parkinson’s to live with.”
"You should be grateful for all the help you've received from me, the doctors, you family and friends."
“People with Parkinson’s don’t die from the disease, but die with the disease.”
"Parkinson's is a gift."
"Your suicide will hurt your family."
"Look on the bright side."
Don’t act shocked, lecture on the value of life, or say that suicide is wrong.
Don’t promise confidentiality. Refuse to be sworn to secrecy. A life is at stake, and you may need to speak to a mental health professional in order to keep the suicidal person safe. If you promise to keep your discussions secret, you may have to break your word.
Don’t offer ways to fix their problems, or give advice, or make them feel like they have to justify their suicidal feelings. It is not about how bad the problem is, but how badly it’s hurting your friend or loved one.
Don’t blame yourself. You can’t “fix” someone’s depression. Your loved one’s happiness, or lack thereof, is not your responsibility.
Adapted from Metanoia.org and "Suicide Prevention" at http://www.helpguide.org/mental/suicide_prevention.htm
What To Do:
Obtain a mental health or psychiatric evaluation of your partner. If your partner is a senior, a psychiatrist who specializes in geriatrics might be a good choice. If there is a diagnosis of depression, it’s important that the doctor evaluate the medication that your partner is taking and determine if it contributes to the depression and that it doesn’t aggravate the motor symptoms of the disease.
In addition, when someone expresses a desire to die, it is important that the words be taken seriously, and he or she needs to be assessed by a medical professional, including an evaluation to determine the risk of a suicide attempt.
Once the depression is somewhat under control with the help of an antidepressant and/or talk therapy, encourage your loved one to not isolate himself/herself and get involved in social activities that he/she previously enjoyed.
In addition, exercise has been found to be helpful in combating depression. Help your partner find a fun exercise program that is appropriate for his/her fitness level and that also provides opportunities for socialization.
Contact your local Parkinson’s Disease associations for recommendations and referrals for services.
By seeking a solution to the treatable problem of depression, you might be able to avoid the tragic ending of your partner’s life by suicide.
Planning for End-of-Life Care
Five Wishes is a living will that lets your family and doctors know:
Who you want to make health care decisions for you when you can't make them.
The kind of medical treatment you want or don't want.
How comfortable you want to be.
How you want people to treat you.
What you want your loved ones to know.
To obtain information about Five Wishes, contact:
The medical information in this article is for information purposes only. It is crucial that care and treatment decisions related to Parkinson’s Disease, depression and other medical conditions be made in consultation with a physician or other qualified medical professional. The author has no medical education and training and is not a qualified medical professional.