For most couples, a Parkinson’s diagnosis will send the relationship down a new path, with each person experiencing their own set of challenges.
The person with Parkinson’s may struggle in the relationship as symptoms worsen and they lose the ability to do certain things. Their partner may struggle as they move further into the role of caregiver.
As important as it is to continue a normal life together, couples should prepare for the inevitable changes that are part of the overall picture of Parkinson’s. Whether you are a person with the disease or their partner, learn how to meet those challenges head on with honesty and compassion.
Relationship tips for people with Parkinson’s
If you’re living with Parkinson’s, changes to your mental and physical health are inevitable and sometimes embarrassing. You worry about maintaining a sense of dignity and control. You worry how others perceive you. You worry whether the disease is taking a toll on your relationship with your partner.
It’s perfectly natural to feel this way, but understand that you are not alone. There are millions of people around the world who are going through the same struggle. You have friends and family offering a network of support. Best of all, you have a loving partner who thinks you’re amazing no matter what. Together, you can get through this.
Here are a few tips to help you out:
1. Talk about what you’re going through.Keeping things bottled up inside is never a good idea. Speak openly and honestly about your feelings and hardships to your partner. Keep them aware of any mental or physical changes you might be experiencing. Communicating is harder for people with Parkinson’s as symptoms progress, so don’t be afraid to talk openly with your partner right out of the gate.
3. Be respectful of your partner’s experience.You know firsthand it’s not easy having Parkinson’s, and caring for someone with the disease has its challenges as well. Remember to put yourself in your partner’s shoes and be mindful of their own struggles in and outside of the relationship. Be empathetic to their needs. Don’t take it personally when they need time or space to themselves.
4. Don’t let Parkinson’s dominate the relationship.Parkinson’s is a part of you, but it doesn’t control you, nor should it control the relationship you have with your partner. You are still the same person they fell in love with. There’s a reason why they’ve stuck with you through good times and bad. Does Parkinson’s have to be the main topic of conversation between you all day, every day? Probably not.
Relationship tips for Parkinson’s loved ones
Being in love with someone with Parkinson’s disease comes with an assortment of emotions. Some days, you might feel loved and appreciated—possibly a sense of pride in being the main source of care and support for your partner. Other days, you might feel overwhelmed, sad or angry at the situation—maybe even frustrated with your partner.
These feelings are natural and nothing to be ashamed of. You are in the difficult position of providing care and support for a person who will become increasingly dependent on you, and that person also happens to be someone with whom you are romantically entwined.
Despite the complexities of this commitment, it helps to remember that honest communication, patience and understanding are usually all that’s needed to keep most relationships healthy and long-lasting.
Here are some tips to help you out:
1. Do your homework.Learn everything there is to know about Parkinson’s disease, including symptoms, treatments, side effects and care options. It’s never too soon to be your partner’s advocate and help them plan for the future. Know the limitations of your partner’s medical coverage. Have a clear understanding of their insurer’s policies for reimbursement of medical care so you can plan accordingly now and into the future.
2. Stay organized and observant.Keep a record of your partner’s medications, doctor visits and symptoms to make medical appointments easier and more beneficial. If you start to observe new or worsening symptoms, such as motor function changes, mood/anxiety concerns or speech issues, notify your partner’s medical provider. Your partner may not be aware that these things are happening.
3. Talk about it. Keep those lines of communication open.Discuss important plans and decisions for the future. Talk about wills, advanced directives and other life issues. Talk about your own feelings and hardships. Admit to your partner when you need a break or some time to yourself, and don’t feel guilty about that. It’s OK to ask family and friends for help, or seek professional in-home care when you need time to yourself.
4. Take care of you.Your health and state of mind can greatly impact your partner’s, especially as they become more dependent on your care. You need to take care of yourself if you’re going to be able to give the proper love and support that your partner needs. Remember that you have your own life, too. Keep in touch with yourself by pursuing your own hobbies and interests, staying active in the community, and socializing with friends and family.
By Kathryn Jones