Answering this question requires understanding and balancing the wants and needs of both the person with Parkinson’s and the caregiver.
Not everyone wants an extra hand, even when you really need it. It can be hard to accept this reality and deal with the emotions it brings up. However, as your loved one’s care needs change, you must continually reevaluate your need for help.
Parkinson’s progresses differently in every person. At first you might just need someone to help pick up groceries every now and then. As the disease advances, your needs might evolve to include a day care service, or a home health aide for a few hours at a time. Eventually full-time home care or a skilled nursing facility might be necessary.
Many people make promises to always care for their loved one themselves, at home. If you made this promise, you may not have understood all the responsibilities that caregiving entails. In late-stage Parkinson’s, many people cannot help with their own movements or activities of daily living. This means regular heavy lifting in addition to the myriad other tasks you are responsible for. You might feel like a traitor if you have to break your promise because you don’t have the physical strength or stamina – or the technical skills – to provide the kind of care your loved one needs.
Ultimately, when it becomes too difficult to balance your own life with your caregiving responsibilities, or when the physical burden is more than you are capable of, it is time to get outside help.
It can be hard to plan for help when Parkinson’s is unpredictable, and you don’t know what each day or hour will hold. But if you put it off for too long, you might begin to feel overwhelmed. To start, pick a time of day for a helper to come that is convenient for YOU. Is there a particular yoga class you’ve been missing or wanting to try? Schedule help so that you can go a couple times a week.
If you progress to getting help for longer hours or more days per week, try to maintain some elements of your routine, so you don’t feel like you’re completely giving up control. For example, you might have the aide(s) or volunteer caregiver(s) come in the afternoons, so you can enjoy your morning routine.
Did you know?
When making the decision to seek support in your caregiving, be sure to consider the impact of a caregiver change on you, any new caregivers, and the person with Parkinson’s. According to research from the Parkinson’s Outcomes Project, caregiver transition can be associated with worsening of clinical outcomes and health-related quality of life. Caregiver strain is a particular consideration for the non-professional family caregiver newly introduced to Parkinson’s care. This does not mean you should remain in an unsustainable caregiving situation. Instead, make sure everyone involved with the transition is prepared, and plan accordingly.
In 2016, the Parkinson’s Foundation hosted a Caregiver Summit that brought together caregivers from all over the U.S. and the world to share experiences and everyday strategies for coping with the complex problems that arise as a result of Parkinson’s. If you missed the event, don’t worry! All the general sessions were recorded and are available on our YouTube channel.