How to Help a Loved One in Denial About Their Worsening Illness
Getting news that you have been diagnosed with a chronic illness can be very scary, especially one that tends to worsen over time. There are many coping mechanisms that patients and caregivers turn to when they have to confront a worsening condition such as Parkinson's disease. Denial is definitely one of these mechanisms.1
Dealing with denial
While denial can feel self-protective or even harmless, it can actually lead to some serious issues if not dealt with. Denial can obviously be a hindrance to open discussions about long-term care.1 Without these open discussions, it can be very hard to make advanced care planning. As discussed in other articles, many aspects of advanced care planning are very important for patients and families.1
Denial can lead to unrealistic treatment decisions
Denial can also cause people with Parkinson's to make unrealistic decisions about their treatments.1 They may feel that they don’t have to take medications or be consistent about their treatment because they may not believe they are actually as sick as they are told. They may also seek more aggressive treatments that are not going to help them get better and may be beyond their physical and financial means.1 People with Parkinson's may seek out alternative therapies that can in the very least be unhelpful, but at the worst may be harmful.2 They may not seek palliative care treatments as their symptoms worsen that could help with pain because it may feel like they are giving up.
What are some of the best ways to help a loved one who is in denial about their worsening illness?
Listen without judgment
Denial can be a way someone controls their own environment until they are ready to process and understand an important, overwhelming piece of information. Sometimes people need someone to talk at and be a sounding board to work through their own thought processes. Being available to just listen without judging someone for their denial may help them work through their own thoughts.2
Know that they are probably scared
Knowing that the condition will worsen over time is a scary thought. People with Parkinson's may be fearful of the future, they may be scared about how their disease will affect the people they love, and their relationships with those people. As the disease enters late-stage, they may also be questioning some big, spiritual issues, such as their beliefs and what will happen after they die. It’s okay to try to talk about big subjects; it’s also okay to refer your loved one to someone who may be more comfortable with these tough subjects, such as a hospital chaplain, another trusted spiritual leader, or even a counselor.2
Be supportive and available to talk to
Your loved one may have to have tough conversations early on with friends and family about money, where they want to receive end-of-life care, and whom they want that care from. Patients with children may have to have tough conversations with their children about their illness and death. All of this can be very tough and may lead to avoiding these conversations completely. Being available and supportive can help you loved on work through some of these tough conversations and feel like they have the power to take charge of their own situation.2
Don’t be afraid to seek out resources
You can’t be expected to bring a patient out of denial of their illness, and many of these conversations are hard ones to have. If you notice that a patient seems to want to talk but you feel unqualified to help them, encourage your loved one to talk to their care team, who has access to many resources to help you both. Most care teams have social workers, counselors, and other excellent resources to help you and your loved one work through this tough time. They may be able to point you to online resources to help guide these conversations.
Being understanding and asking for help
Living with a chronic condition that worsens over time is a stressful situation. Helping someone through the denial of their diagnosis isn’t an easy position to be in, but it can help alleviate further issues as your loved one progresses through their disease. Try to be as understanding as possible, and don’t be afraid to ask for help for your loved one and yourself as you go through this hard time.
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