The following discussion may help to ease some of the challenges of PD care-giving:
- Monitor care receiver tasks. Be cognizant of those duties the care receiver performs and watch for signs of inadequacy. Do not let bills go unpaid for months before stepping in. Collect and safeguard all tax documents. Understand the sequence of periodic car and home maintenance. Monitor medications closely to ensure that the care receiver does not decide to do something unsafe and be prepared to step in when they are no longer able to reliably self-medicate. Be organized so that any outside caregiver understands your routine. Be prepared to assume additional tasks to avoid unnecessary work later. But…
- Each task you assume is one more loss of independence and self-worth for the care receiver. Recognize that he or she may resent the intrusion or fight to retain responsibility. It may be helpful to start discussions early, while rational discussion is still possible, regarding your assuming tasks. You might ask the care receiver to show you how the task is accomplished to ease the transition. That tactic may not work, in which case you may simply take over the chore. It is imperative that the caregiver understands how to most effectively work with the care receiver to achieve the desired outcome. You must be strong when the outcome is important.
- Do not expect acknowledgment for your efforts as a caregiver. If words of appreciation come, savor them, but recognize that the care receiver will likely not acknowledge much of your caregiver efforts and sacrifices. Even if the care receiver recognizes and appreciates your efforts, the care receiver may not be able to express their appreciation.
- Keep children and siblings in the picture. It is important that those close to the PD sufferer remain aware of the changing condition of their loved one. Do not try to “protect” them from the reality of PD. Do not let them be surprised by “how mom/sis has changed” when they come for a visit after a long absence. By remaining aware of conditions they will be more able to accept the PD suffer as they are and much less likely to react poorly towards you or your care receiver. Also, as appropriate, keep them aware of your contingency plans, power of attorney arrangements, living will arrangements, etc. They may need to take action and foreknowledge will prepare them for the eventuality.
- Recognize that your job as caregiver for a PD sufferer will grow over time. While continuing all the responsibilities you previously shared, you will assume added tasks of caring for both the care receiver and you. It may be useful to list or catalog the tasks, particularly if the care receiver was independently responsible for many tasks. Moving forward, you will no longer be taken care of or told what to do and when to do the important tasks of life. It is a hard reality, but one best accepted sooner rather than later before you are compromised by possible anger or depression.
- Join and participate in a PD caregiver support group. Through group discussions and sharing you will realize that others are facing the same challenges and fears that you face. Many strategies and coping mechanisms will be discussed. Through the discussions, you will gain a better understanding of yourself, your fears, and the skills required to complete the tasks that make up your job of caregiver for a PD sufferer.
- Take care of yourself. Care giving is stressful, frustrating, time consuming and will cause sleep deprivation. You must remain strong for the long haul. Ask for help, exercise, focus on adequate sleep, and maintain joyful activities in your life, even if you must hire a caregiver to give you the time.
- And finally, remember the Serenity Prayer:
“God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.”
More from Bill to follow…