You start to question, “Who am I”? Where do I fit on this team? It has been 6-18 months or a few years of taking care of a PD recipient, and also the realization starts to occur that this will probably be your existence for many years. Errands, paying bills, and the day-to-day hands-on care is now part of your routine.  Running the household is now falling on your shoulders, and you’re juggling current budget needs and trying to understand what a future budget is going to be. All the while providing needed care for your PD recipient. Your spare time has become restricted to a couple of hobbies, activities, and buddies that are most significant for you, but doggedly, the determination remains to savor existence and invest time performing these things.  It will be significant that you maintain these inside your existence.

How do I train for this position? Here’s your entry into the caregiving world–welcome to the big leagues is your time to experiment; it’s easy to discover the things that work and don’t work.  You will learn far more than you’d like to know about how the healthcare system works, how it doesn’t work, how it operates against you, and just how frustrated it’ll make you.  This can begin to define your personality like a health professional caregiver/partner: What tasks and relationships can you and your PD care recipient do by keeping open communication? This also begins to define the relationship. Is this working for both of you? Exactly what does work, and what doesn’t work with the care recipient? Several things are likely to cause overwhelming stress for the two of you. Become familiar with and learn these; in fact, both, or you will learn what situations should be avoided.  Why add stress to a stressful situation?

OK, Rookie, what is your training program? You’re a newcomer to this caregiver place, so set the ego aside and obtain help early; you are going to need it.  One factor in the early stages is discovering the available counseling services. Also, generate respite care a couple of days a week, a home health aide, friend, etc. Approach this as a marathon using these early interventions; don’t wait until the latter stage and make these adjustments “last ditch” options.  In the beginning, it is crucial to involve the household and family and share your feelings, concerns, and fears.  This should include financials, future health, and socialization.

During this PD journey, you will be exposed to many professionals within the healthcare industry and grow and learn from them.  Learn to provide proper care.  Discover who the Parkinson’s organizations are in your area, refer to, and request videos, books, training literature, and direction on the various local resources.  Caregiving is a hands-on, very physical activity, so ask the professionals for the proper techniques for lifting, transfers, bathing, dressing, etc. The more knowledge you have, the more confident you’ll become, improving your expertise as you start using these abilities and methods to look after your recipient.  PD caregiving is hands-on, physical interaction daily.  Be prepared.

One of the most crucial aspects to grasp and embrace is that as a care-partner, you are an integral part of this equation. Therefore, it’s paramount that you take care of yourself. Make it a point to schedule regular breaks and time away from your caregiving role. The duration of these breaks is not as significant as establishing a consistent schedule. Remember, you cannot provide optimal care to your PD recipient if you neglect your own well-being.

Please don’t live on an island with this caring for a PD recipient, ask for help and ask relatives as they can help.  It may be through financial support, social support (for example, calling the concerned recipient regularly “simply to talk”), and respite care.  Rely on them and request them; if you don’t, then how will they know what your needs are?  Be prepared when someone asks what I can do to help.  Have a list ready of what you need.  Don’t go into denial saying “I don’t need help, we are ok, etc.”

Consider the immense value of joining a support group in your community. You’ll find people who are going through the same challenges as you, and they can offer not only helpful suggestions but also a sympathetic ear. While friends and relatives can be supportive, meeting people in the same situation as you can provide a unique level of understanding and support.

Remember that your care recipient has wants, needs, and wishes, so communicate with them and seek their advice, input, and ideas as well. Ask them about their feelings, fears, and desires.

In the early stages of developing your caregiving personality, I recommend you keep a journal. This is an excellent time to return and reflect on the journal changes both are going through. What exactly are your emotions, fears, and concerns now? How have they transformed, and what’s different? What final results are you currently pursuing? What deficits have you observed throughout this journey? What alterations in the relationship cause sadness? What changes have brought you comfort?