Being a Caregiver for a Partner with Parkinson’s (part 2)

Contributed by William Hicks

The first and arguably the most important skill for success as a caregiver is to understand how to motivate and facilitate the care receiver and to understand your own reactions to care-giving. Just as the caregiver role expands, the role of the care receiver shrinks. Due to cognitive issues, they may not understand the reasons for the reduced role or willingly accept it. Also, due to cognitive decline, having a rational discussion regarding the shifting roles may not be productive or lead to the desired outcome. The PD sufferer becomes more and more childlike, yet unlike a child, will not mature over time. “I have to do more and more, I get more and more frustrated, and I dislike myself for it.” “I was so mean to _____ the other day and felt so badly after it was over. I know that ___ felt badly also.” How many caregivers have said these words or had these thoughts? These concerns may indicate that the caregiver is human and caring and/or does not yet understanding the scope and conditions of their care-giving job including the necessary tasks and skills. The following discussion may help to ease some of the challenges of PD care-giving:

• The care receiver is probably not being difficult on purpose. Accept that he or she simply cannot help how they react. Similar to a child, they may take actions or refuse to take actions in ways that make no sense or are aggravating. The caregiver must be the adult in each situation.
• Understand and accept the role reversal. If the caregiver is caring for a parent, the parent-child relationship is reversed, but the parent may not see or accept that. When the caregiver is a spouse, the roles of the marriage relationship may be reversed and evolve to a parent-child relationship. The care receiver may not see or accept this role change, but the caregiver must recognize his or her changing roles and responsibilities and act accordingly. “Business as usual” won’t work.
• All care receiver activities will take longer and can be frustrating. Allow additional time and expect delays in their getting up, getting dressed, eating, bathing, and getting ready to go out. Recognize that decisions regarding clothing or accessories may not make sense or may be redone several times. Don’t get frustrated and don’t expect the care receiver to hurry or feel your anxiety towards being late. They won’t—and your pressure and criticism will not help. It will only increase your level of stress.

More to follow…