Parkinson’s disease can rattle even the strongest romantic relationship, and for good reason. Whether you’re married or in a committed relationship, whether you’ve been together decades or have a newer relationship, the fact that you are sharing a life with someone else suggests you’ve at least considered, if not discussed, this important subject: You’ll be there for each other, no matter what. In sickness and in health, right?
The diagnosis of a chronic, progressive disease like Parkinson’s tests that commitment in important ways. It changes the person with the disease in obvious ways, but it also changes the partner who is thrust into the caregiver role. The disease is something that doesn’t happen just to the person who has it; it happens to the relationship too.
Over time, everything is affected: how you relate to one another, who handles what household or work responsibilities, how you handle finances, what your sex life looks like, what you do for fun, how you deal with and talk to your children. All these things shift with a diagnosis of Parkinson’s.
As much as you are focused on facets of your physical health and well-being, you should pay close attention to keeping your relationship strong and vital. Here are some tips.
Separate yourselves from the illness. This is probably the most important thing you can do to keep your relationship strong, say experts at the Johns Hopkins Parkinson’s Disease and Movement Disorders Center.
An illness like Parkinson’s disease has the potential to define who you are — and, by extension, define the parameters of your relationship. Recognizing that the disease is a thing that you are dealing with together, that it’s outside the intimate relationship, goes a long way toward keeping you two closely bonded.
If you’re frustrated with circumstances caused by the disease, from physical symptoms to financial stresses, keep the focus on the disease, not the person who has it. On the same note, don’t allow the necessary things you do to manage the illness, such as going to doctors’ appointments and therapy sessions, become all you do together.
As much as you can, do things outside the illness that you enjoy as individuals and as a couple — travel, hike or participate in whatever leisure activities you've always enjoyed.
Join a caregiver support group: All too often, when one person has Parkinson’s disease, the partner becomes a caregiver whose own needs can be shunted to the side, which can damage his or her health and the vitality of the relationship.
Be sure you recognize feelings of frustration or anxiety early on, and seek either professional counseling or a support group before those issues become unmanageable. Ask your doctor or doctor’s office for referrals to local support groups for families, couples and/or caregivers.
Promote intimacy. This isn’t just about your sex life, though that’s a big part of your intimate connection. You may have to confront some losses, including some that go beyond sex. The diagnosis may change how you imagined your life together would play out.
Talking through those losses is important for your relationship. In terms of your sexual relationship, be open, sensitive and experimental. Try to find ways to be sexual without the physical act.
If you find that you’re having trouble working through these issues together, consider seeing a sex therapist who counsels people dealing with diseases to help you identify issues and work through them together.
Consider couples therapy. It’s not unusual for partners of people with Parkinson’s disease to feel that their life has been consumed by the illness. They may long for more time to themselves.
Meanwhile, the partner who is sick may feel guilty that he or she isn’t able to contribute to the family or the relationship in the same ways as before. It can be a challenge to remain open and honest.
That’s when you need an impartial, professional voice. When you find it hard to broach thorny relationship issues one on one, an objective person, such as a counselor, can be a big help.
Involve adult children. Adult children do play a role in how couples deal with one other. Many couples will put up a front for their children, protecting them from the realities of the disease, as if they were still too young to understand. That can take a toll on your relationship.
Don’t let the disease become the elephant in the room in your wider family. The more you can openly and candidly discuss your changing circumstances with your children and ask for help, the better off you’ll be as a couple.
For example, adult children who understand your challenges may be willing to step up and offer respite for the parent who has become a caregiver. Sharing the care responsibilities keeps the caregiver healthy, which in turn keeps the relationship stronger.
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