The following discussion may help to ease some of the challenges of PD care-giving:
- Work to understand your care receiver. Determine what motivates him or her. Determine your actions that are most likely to obtain the desired response or outcome from your care receiver. Learn the words or inferences that lead to resistance or “rebellion”. Achieving the desired or necessary outcome is a key element of your job description as a caregiver (even if you never applied for the job!).
- Your independent world will decrease as your responsibilities to the care receiver increase. Recognize this reality and do not try to “do it all” by maintaining a job or other independent activities while concurrently assuming additional responsibilities on behalf of the care receiver. This shrinking of the caregiver’s world may cause significant sadness, bitterness and/or resentment unless the caregiver recognizes and accepts this situation. Maintaining some level of independence may be achieved by periodically utilizing a paid caregiver.
- Prioritize actions. Going to a medical appointment is important. Making a safe transition to the car is important. Going to lunch is not. Making the bed, doing the laundry today, or having a neat closet is not. If the care receiver wants to exert some authority regarding not going to lunch, let it go. It is not important that you be in control of that activity, so go in whatever direction the care receiver leads. Pick your battles carefully. If any outcome is O.K., follow the lead of the care receiver.
- Expand your tolerance for imperfection. Your care receiver may act in ways that, under normal situations, would not seem acceptable. When you consider an action or situation intolerable, your level of anger, stress, and anxiety will increase. Your care receiver will probably not understand your anger and may react poorly. Your anxiety and stress may intimidate your care receiver, and likely will not improve their actions or performance. Instead, match your expectations to the reality of your care receiver’s actions and abilities.
- Integrate the medical care of your care receiver. Your family doctor will likely not have the records, interest, or skills to assimilate inputs from the other specialists. You alone will need to maintain the “big picture” as integrator of conclusions from the various medical professionals such as the neurologist, orthopedic specialist, cardiologist, therapists etc. Various specialists will suggest different therapies. Keep notes from medical appointments and treatments including what works and what do not work for your particular care receiver. Be cognizant of treatment conflicts and evaluate their value for the care receiver. Only you will know all of the medications that are prescribed for your care receiver. It is your task to integrate all medical history and ensure that each provider knows what he or she needs to most effectively treat your care receiver.
More to follow…