Linda Giorgilli Rice was a caregiver for her father, who had Parkinson’s disease and dementia. He passed away in 2009. Linda is involved in advocacy and is writing a book about her caregiving experience.
Star light, Star bright,
First star I see tonight
I am working hard to finish a book I began writing three years ago. It is about my father, his battle with Parkinson’s disease, my role as his caregiver and my journey into advocacy. This journey has taught me more than I ever imagined. It continues to challenge me. It has opened my eyes and my heart. It prompts me to share what I already know from my own experience, as it continually teaches me answers (and new questions) to those problems that Parkinson’s disease created when it entered my world. I have often referred to Parkinson’s as the “uninvited guest.” It would seem Parkinson’s disease is not now and has never been a guest on anyone’s invitation list. Still, once it has arrived, it leaves no choice but to rearrange life and find ways to accept it. It creates a requirement for change where change had not been anticipated.
I love the thesaurus. I look up the word “acceptance” and find the following: acceptance – an attitude of accepting a difficult or unpleasant situation because you know that it cannot be changed or avoided. I pay attention to the other entries for acceptance. They include: patience – the ability to continue doing something for a long time without losing interest, especially something difficult; strength – the ability to achieve something, even in a difficult situation; forbearance – the ability to be polite, calm, and patient in a difficult situations; patience (listed again) – the ability to wait for a long time without becoming angry or upset; and patience (listed yet once more) – the ability to accept situations that you do not like without becoming angry or upset.
This article is for the caregivers who share their lives with a person who has Parkinson’s disease. They may be a spouse, parent, child, sibling, extended family member or a friend. I recently replayed a video I have watched many times before. In the video, people with Parkinson’s who are participating in the Parkinson’s Unity Walk are interviewed. One woman, who has Parkinson’s, talks about those who choose to stay when a loved one is given a diagnosis. She says that people with Parkinson’s have no choice in living with Parkinson’s, but that it is those who do have a choice and make the choice to stay, who are truly special. You might feel you cannot imagine anyone abandoning a loved one due to disease, but sadly it can and does happen.
It is important to recognize that Parkinson’s disease affects the caregiver in a very troubling way. Disease steals not only from the person who has it, but also from all who love and care for that person. The emotional and physical toll is very real, and the issues with guilt, sadness, the inability to "fix" the person you love, and a constant desire to be perfect when perfection is not possible haunt any caregiver. Caregivers feel the very real impact of the disease.
The role of caregiver is one that challenges your emotions. Because it requires adapting to a situation that is difficult to prepare for, it is easy to feel like you are not doing things just right. There is often guilt from unrealistic expectations of your own abilities as caregiver with this very unpredictable disease. Parkinson’s is a disease where the one consistency is the disease’s inconsistency! No person is affected in exactly the same way as another. There is no crystal ball to even help define what symptoms a person will experience within a day, or from day to day. The progression of the disease is very individual and almost impossible to predict.
It has been four years since my father passed away. I had counseling that helped me a great deal, but I still find I question myself over so much. My own experience taught me plenty about feeling guilt and the "could have, would have, what if, and if only" thoughts that a caregiver lives with. There are these large expectations of one’s self in caregiving. It is very difficult learning to accept that you can only do your best and must let go of any desire to be perfect.
Caregiving always involves the process of trial and error. There will be plenty of disappointment over perceived imperfections. It would be wonderful if we could think of those imagined “imperfections” in caregiving as being nourishment to a sprouting seed, one that absorbs the nutrients, slowly developing a strong stem and then producing leaves upon that stem. Finally, we witness a bloom that bursts into a beautiful flower, the petals as delicate symbols of love and devotion. We nurture this flower. We learn to pull the weeds that threaten to strangle the flower. Like our nurturing of that flower, we continue to do our best, and by doing so we suffocate the grasp of Parkinson’s disease. We begin to learn what works and find with perseverance we reach as close to the sun as possible. Keep reaching. It is sometimes through a sky blanketed with clouds that the brightest ray of light shines through. Be good to yourself.
I wish I may,
I wish I might,
Have this wish
I wish tonight.