If your loved one was recently diagnosed with Parkinson’s disease, your world might feel like it’s full of unknowns — and that can make the future seem scary.
Right now, you might be focused on educating yourself about symptoms, treatments, and the progression of the disease. As the disease progresses, your role in your loved one’s care may also change.
Maybe you’ll find yourself keeping track of doctor’s appointments and medication schedules. You might also be providing assistance with activities of daily living or adapting the home to meet their needs and abilities.
Coping with change — not to mention watching someone close to you struggle with the symptoms of the disease — is challenging. Fortunately, there are many tips, resources, and supports for you as you help maintain the quality of life for your loved one — and for yourself.
So if you’re wondering how to take care of your mom or dad with Parkinson’s, here are five tips for new Parkinson’s caregivers.
1. Join a Support Group
Your loved one needs support — and so do you. Caregiver isolation is real. To prevent feeling like you’re cut off from the outside world, join a support group where you can talk openly and honestly about what you’re going through.
Although it might feel awkward at first, support groups help you meet people who are in a similar situation, vent frustrations, give and receive support, and exchange resource information and coping strategies.
To find a support group, search for Parkinson’s resources near you with the Parkinson’s Foundation ZIP code tool or call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO. You can also ask your loved one's doctor or call a local hospital for help finding one in your area.
2. Get Organized
It’s likely that you’ll accompany your loved one to doctor’s appointments, make phone calls to insurance companies, and watch for changes in your loved one’s symptoms, abilities, and mood.
It helps to be prepared by keeping all of their medical notes, insurance records, appointments, important contacts and documents, and medications list in a folder that you and other members of the caregiving team can easily access.
3. Support Your Loved One
As a new caregiver trying to navigate how to take care of your mom or dad with Parkinson’s, it’s easy to fall into the trap of “parenting your parent.” But this role reversal can create tension in your relationship. Your parent might struggle with feeling like they’ve lost control or even purpose in their life.
To avoid the negative effects of role reversal, don’t take on responsibilities that your parent is perfectly capable of doing. Instead, encourage their independence and try to give them the best possible chance to do certain tasks on their own before stepping in to assist out of frustration.
A few examples:
- Talk to them, not about them, when attending doctor’s appointments or managing other relationships, such as a financial planner or bank.
- Even though you may be responsible for writing the checks out, your parent may still want to review and “approve” paying the bills.
- Offering to help your parent shower in the morning or evening, whichever they’d prefer, is a great way to allow them some autonomy as you step into a more hands-on role.
Be sure there is a clear understanding of what your parent does want help with and what they would prefer to continue to manage on their own.
4. Plan Ahead
Although Parkinson’s disease progresses differently for everyone, your loved one may eventually need more assistance than you or other loved ones can provide at home.
It’s important that you talk about the future so that you not only understand your loved one’s wants further down the road but also that they know how much you feel comfortable taking on as a family caregiver. Letting a health crisis set the stage for this type of conversation can leave you making important life decisions under pressure and emotional stress or, even worse, leave you guessing what your parent’s wishes are depending on the extent of the crisis.
Discuss options such as home care, assisted living, and memory care. An assisted living community that has a memory care community on the same campus can allow your loved one to age in place, getting the assistance, socialization, and compassionate care they need — and deserve — while also allowing you to have some peace of mind.
5. Take Care of Yourself
Whatever you do, don’t put your life on hold. There’s no way you can safely take care of your loved one if you’re not physically and emotionally well.
And don’t feel guilty about it, or at least try not to. Remember, the less stressed you are, the better able you’ll be to provide the best care for your loved one.
Becoming a family caregiver for your loved one is a big undertaking. For more tips and resources to help guide you through this process, download our Becoming a Family Caregiver eBook.