When my father and mother moved in with me, my father’s Parkinson’s had progressed to a fairly troublesome stage. However, he could still manage most of his activities of daily living (a term used by caregivers and often referred to as ADLs). ADLs are those things such as getting dressed, showering and shaving, eating without assistance, toileting, among other typical activities we seem to take for granted in our lives.
A diagnosis of Parkinson’s disease is given by the doctor, but typically without any real instructions or a true ability to gauge how each person will be affected. It is a chronic and progressive disease, meaning it will get worse over time, but the symptoms manifest themselves uniquely in each individual diagnosed. There are so many factors that create turmoil in understanding how to handle the situation. There are many types of Parkinson’s disease, affecting people of all ages, races, religions, and ethnic backgrounds. Parkinson’s disease shows no discrimination. If only we, as a people, could find that within our society!
People cope in different ways much the way the disease presents itself so distinctly unique to each person who is diagnosed. Some people prefer to deal with it by denial. Denial is not necessarily a terrible thing. It keeps many people with Parkinson’s feeling better for a longer time. However, at some point, it would seem truly critical that the person and their family or support system decide it is best to learn all they can about this disease, and the many ways they can make things safer for themselves at home and/or at their workplace, if they are still able to work. There is a need to seek resources, some of the best being found at the various Parkinson’s foundations. The National Parkinson Foundation is an excellent choice, where there is great information provided through online sites, help phone lines where one can speak with an individual to direct them to what they need or answer questions, pamphlets with every imaginable topic involving Parkinson’s, along with webinars and seminars, as well as videos and articles, all to better educate those in need.
My father’s health declined and he eventually needed my care for all of his ADLs. He developed dementia with his Parkinson’s and a syndrome called Sundown Syndrome that meant the symptoms of the dementia were most troublesome at night. We had used baby monitors for me to hear him calling, but eventually I slept on a couch outside of his bedroom for over a year to listen for his diminished volume of voice cry out at about 2:00 a.m. each night. I would help move his very stiff body out of bed, help him to use the bathroom, and then bring him out to his recliner, where we would talk for awhile. He would insist he be able to see me on the couch, was sometimes a little upset or angry, but I learned to divert his attention to nicer thoughts and also learned not to try to reason. There was no sense to reasoning and this was a gigantic lesson shared with me by a nurse and one that changed my world for the better.
I am not going to try to teach any true caregiving tips in this article. They are all available within this site and you really need to seek them out, so that everyone’s life can have the best quality. I use the term “lessons” in the title of this article because, in retrospect, no matter how much I read (and I read many books) or how much I thought I knew, I hadn’t a clue the amount of resources out there for me (as is assumed by the doctors). I learned a lot after I lost my dad, much of which I wish I had understood before losing him. I think, all in all, I was a loving and patient caregiver, but am fascinated at what happened after he had passed away, those things I learned after I no longer took care of him. When you are in the midst of caregiving, that same doctor that leaves you without much information doesn’t realize that, in your exhausted state, you will probably never get to that computer or remember the page of that book that told you what to do for the specific issue at hand.
After my father passed away and I wound up online sharing my poems, notes to my dad, stories about our experience, I began to learn about individual support groups, many of which I joined. They are definitely wonderful, but if they exist without good monitoring, can potentially get a little out of control. Sometimes there are misunderstandings or misinformation, but most of the time everyone remembers the common goal and that is the battle against Parkinson’s disease. Support groups should never involve battles against one another, but only the disease. There can be people who join these groups to try to sell “miracle cures” and prey on the members’ hopes. I have also begun to recognize the people who join that have just been diagnosed, as well as those who are “old timers,” having lived with the disease for many years now. The old timers know the disease better, but they may also have chosen to remain more comfortably in denial, be complete optimists or complete pessimists. I believe it is important to tread the fine line of encouragement and optimism, coupled with a dose of reality, so no one is blindsided by a new or bothersome symptom. Yet, at the same time, realize that the individual, based on their attitude and will, can find the best ways to adapt, so that they lose as little quality in their life and try always to be the winner in the battle with that stubborn opponent, Parkinson’s disease.
I did not intend for this article to become so lengthy. It has been three years since I lost my dad and got involved online. It was only recently that I was struck with the realization that it has been awhile since I have been involved in various PD support groups, many of which overlap one another. There are many of us who are very much acquainted and recognized, and share membership as part of the PD community. I can tell almost immediately when someone is newly diagnosed and his or her attitude still so vibrant and determined, or when someone has had Parkinson’s longer sharing good and bad days somewhat equally. This is not mentioned to reduce anyone’s hope. As a matter of fact, I have witnessed a greater sense of promise that better medications and that elusive cure will be found. I have also seen incredible increases in the attention given to Parkinson’s awareness, but we must still continue with relentless strength and will to raise our voices even louder.
My advocacy will not stop anytime soon. Giving a voice to Parkinson’s disease is my passion. It is what I believe is most needed, so that the general public can more actively provide support and join those of us touched by this disease to seek its end. We need voices as loud as those fighting for awareness of cancer and diabetes, although this should not be a competition. All these diseases need help. I realize I now have a history, will continue to learn even more as time progresses, and cannot stress enough the importance of seeking out the available resources early on. Learn everything you can. Be proactive. It is what is best. The road I traveled had me understand that maps for progressive diseases are like those crumpled, fraying maps in the glove box of your car. There is often no clear direction and the road signs point every which way. Progressive diseases can be confusing and troublesome, without a clear compass to lead the way. If you are reading this, you have already taken a great step, stepping into the resources of the National Parkinson Foundation. You are in great hands. Reach out and allow those hands to embrace you in the journey with Parkinson’s disease. It will not take away all the bumps in the road, but surely it will provide the seatbelts so important.
No matter what, do not decide that the journey will be short, but prepare for a long one and do everything to treasure the beauty of life. Caregivers are perhaps the most powerful component in remembering that despite the harshness of any storm, what follows is so often the fresh smell of nature. Nature is the glorious picture of life itself and the sun returns to warm the spirit. Always give the gift of love and wrap it with a bow that is as tender as your heart!
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.