When Help is Needed
It has been said that Parkinson's is a family disease -- that is, when someone is diagnosed, everyone in the family is affected. Hopefully from the beginning there has been a variety of people involved in meeting the needs of the person with Parkinson's - needs for socialization, emotional support, education, love and more. No one person is ever able to meet all needs, and as Parkinson's progresses this becomes more and more true.
As your loved one's care needs change, you must continually reevaluate your need for help. 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.
One of the first ways to relieve some of the stress of caring for someone with Parkinson's is to add others to the caregiving mix. Take advantage of your network of friends and family. Most people get a good feeling when they can help someone. When someone asks how they can help, have a list of ideas to suggest. Even occasional help eases the task of caregiving.
You can download this worksheet from PAA to help identify friends, family and volunteers for your Circle of Care.
The best time to investigate in-home care options as well as adult day programs and other services is BEFORE these options are needed. This will make your life easier if these transitions become necessary in the future.
Many people make promises to always care for their loved one themselves, at home. These promises are often asked for and made even before the person develops any health concerns. If you are asked to make this promise, affirm your commitment and support for the person's desire to remain at home if it is safe and practical to do so.
If you have already made this promise, you may not have understood all the responsibilities that caregiving entails. For example, in late-stage Parkinson's, many people cannot help with their own movements or activities of daily living, and falls can become more serious and frequent. This means regular heaving lifting.
You might feel like a traitor if you must break your promise because you don't have the physical strength or stamina - or the technical skills - to provide the kind of care the person with Parkinson's needs. It is best to discuss, in advance of need, the situations that may arise that will not allow you to keep your promise. Also, talk about various care alternatives that may become necessary and encourage the person with Parkinson's to tell you which scenarios are most acceptable.
Sometimes, people with Parkinson's refuse to let anyone besides the primary care partner provide help. Or, if outside help is brought in, the person with Parkinson's insists that the primary care partner remain at home. This is unrealistic and unsafe for both you and your loved one. Have a straight-forward conversation with the person with Parkinson's about what will happen to him or her if something happens to you. It may seem easier in the short run to put up with these demands rather than go through bouts of arguments and poor behavior. However, with resolve and continued exposure to outside care, the person with Parkinson's will eventually come around.
Ultimately, when it becomes too difficult to balance your own life with your caregiving responsibilities, when the safety of the care recipient is in question, or when the physical burden is more than you are capable of, it is time to get outside help.
Parkinson's Foundation. Page 86. When is it Time to Get Help? Chapter 5. Getting Outside Help. Caring and Coping. A Care Partner's Guide to Parkinson's Disease. "Booklet."