Family relationships can be complicated even without illness. You might find it difficult to talk to your loved ones about your disease. You may not want them to treat you differently, or you may feel guilty. You’re certainly not alone in these feelings. But talking to your family about Parkinson’s is important — it’s something you should try to do.
Parkinson’s is a condition that will require help and support because it affects your daily life. Being able to have open communication with your family can allow them to better understand what you need and help you from feeling isolated.
Here are some reasons to discuss your disease with family and how to go about it.
They can’t read your mind
Only you know what you’re feeling and what you need from others. If you need to vent frustrations or express fears, tell people you just want them to lend a sympathetic ear.
Parkinson’s can cause you to have less control over your facial expressions. The muscles in your face may become stiff, making it harder for you to make the regular expressions people are used to. As a result, people may mistakenly think you’re unhappy. Explaining this symptom and directly telling people how you’re feeling can help to avoid a lot of confusion.
Family members may also be worried or overwhelmed. Talking to each other about your concerns will help you come up with a plan for how to deal with the changes Parkinson’s brings.
People want to help
More often than not, people want to be helpful, especially close loved ones. When they’re not sure what to do, some may try to step in more than you need, and others may avoid the situation. Having an open conversation about how they can be helpful and what you’re still able to do on your own can prevent everyone involved from getting hurt or frustrated.
At times, you may feel independent and can handle a task on your own. On other occasions, you may need someone to step in. Don’t be afraid to tell people what you need from them.
Some people will want to take on an active role in your care. For example, an adult child or partner may want to come to doctor appointments with you. Discussing how involved family members will be helps avoid misunderstandings.
Discussing Parkinson’s prepares your family for noticeable symptoms
Your family will likely be the ones to see you the most, so they’ll be with you during different stages of the disease. Talking about the possible symptoms can help them mentally prepare.
You don’t have to explain every aspect of the disease if you don’t feel comfortable doing so. If people want to know more details, you may find it helpful to refer them to resources like the National Parkinson’s Foundation or ask your doctor for some literature you can share.
You’ll need to arrange for care in later stages
As your disease progresses, you will need more care. There’s also the possibility that you will experience dementia or hallucinations in the final stages of the disease. It’s good to discuss a plan earlier. If you have preferences for how you’d like to be cared for or where you’d like to live, communicate that to family members.
Once of the hardest things to face is your own mortality. But being open about your wishes and getting your affairs in order can be very helpful to loved ones. It can also help you to have peace of mind. You may want to talk to a spouse about your end-of-life care preferences or make sure you have the proper documentation if you plan on leaving money or property to family members.
Feeling more prepared for what’s to come can help you all focus on enjoying your time together.
If you’re finding it hard to communicate openly with your family, you may want to enlist the help of a social worker or psychologist who has experience with Parkinson’s. Both are trained to teach you and your loved ones ways to talk about your disease and find healthy methods to cope with the lifestyle changes it brings.
They can also recommend support groups for you and your family to meet and connect with others going through the same experience.