Caregiving for my dad was like no other role that I had ever experienced in my life. Despite reading and absorbing everything I could about this disease, its constantly changing challenges were to be what I would learn were the only consistent factors about it. My role was one that took place later on in my dad’s battle with Parkinson’s, when dementia had come on board, so this article addresses things I learned, discovered, created and fostered through trial and error at a time when the disease proved more difficult than my dad’s earlier days with it. I do want to encourage people who have been diagnosed with Parkinson’s disease by expressing that my dad lived with this disease without a lot of difficulty for many years. He would have told anyone with it that he was a happy man, never ceasing to grasp on to those things that reminded him there was so much to be grateful for in life. It is important not to lose sight of this and create the best of times with the right medications and attitude, in hopes that the progression will go slow, and you will find ways to manage the disease, so that it does not manage you.
At this point, you might be wondering why I appear to be discussing the person with Parkinson’s disease and not the caregiver. However, it is because one of the most important lessons I would learn was a belief in caregiving that the emotional support you provide is key to the emotional well being you ultimately feel in return.
What do I mean by this? I mean that so much concentration has been put on the physical aspects of caregiving; we often forget the strong feelings that are shared in a role of such trust. The person with Parkinson’s is relying upon you to help their self-esteem as they struggle through a disease that often attempts to steal every bit of their dignity. We all want to be independent. However, the reality of a disease that is chronic and progressive means there will, more than likely, be changes that compromise independence, and thus test the person with Parkinson’s and the caregiver when it comes to emotion.
Dignity: Definition of DIGNITY.
1: the quality or state of being worthy, honored, or esteemed. (From Merriam-Webster Dictionary)
Empathy: Definition of EMPATHY.
1: the imaginative projection of a subjective state into an object so that the object appears to be infused with it.
2: the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also: the capacity for this. (From Merriam-Webster Dictionary)
I want to confirm that I am no expert in psychology or in the medical field, but I bet I could give either a run for their money when it comes to making a person with Parkinson’s feel good, and thus finding the gift of emotional self satisfaction that comes from knowing you have put yourself in the shoes of the person you are caring for, a person who lives with the inability of independence they once enjoyed, an asset that is perhaps the one we often feel defines our value in life. All of us hate to ask for any help. It minimizes our self-esteem tremendously. So, let’s leave the focus of physical assistance and recognize the compassion that I promise will leave the caregiver able to feel much better with the happiness he or she has been able to provide, and also create some enjoyment in the caregiving process.
One day I was clipping bushes in my backyard. It was hot and I had worked too long without a drink. I stopped to take a break and came into the house to get a drink of water. My hands were shaking so hard that I had to hold my one hand with the glass and allow my other hand to help raise the glass to my lips in order to steady it. I had hardly been able to pour the liquid in the glass without spilling it. At that moment, I suddenly fully empathized with how it must be to deal with tremors on a constant basis, and then thought of how it must be to brush teeth, eat food without spilling it; all those simple things we take for granted. My outlook would forever be one that, when fearing I’d lose the patience needed to be a caregiver, I would again think of that glass of water and immediately stop my frustration. I was lucky enough not to have to go through what a person with Parkinson’s must feel each day. I learned to accept that my world was actually easy in comparison, despite any difficulty I might feel in my caregiving role.
When I had to first convince my father to allow me to see him naked in order to help with the toileting, showering, and dressing, he was shocked and insisted I could not do that. I was his daughter and he in no way would allow this to happen. Well, I said to him, “Daddy, if you think I want to see that one-eyed monster any more than you want to show it to me, you are wrong!” He laughed harder than he had for a long time and from that day forward, we created signals, so that he could let me know he needed to use the plastic urinal (much cleaner and more helpful than what had become a hit or miss situation of him previously using the toilet himself).
When showering my father, he would often complain the water was too hot or too cold, or I wasn’t washing him just right, but I’d tease him that he was being handled like the king he was, and, of course, I knew how to do my job right. The thing he would get the angriest at was that I did not shave him exactly as he used to like to do it. I’d laugh with him that he was at my salon and if he preferred he could go to a new one. He decided he liked mine best. He’d complain as I clipped his bushy eyebrows, hair around his nose, ears and neck, but in the end he wanted the dignity he had always felt having good hygiene. My favorite joke was that I would put my “expensive” hair gel in his hair. I told him not one of his friends used the “good stuff.” My dad would glance at himself in that mirror and seemed quite satisfied with the results. Providing him with dignity was my all-time favorite. Too many caregivers don’t pay enough attention to remember not to rush to get those clothes on the person with Parkinson’s. They fail to make sure the clothes are buttoned just right, the socks and underwear on without being twisted, that all looks spiffy, enabling that person to be as proud as they always were before the disease.
I have seen other caregiver letters and they have great ideas on tips to make things safe, proper ways to move a person or sit them up in bed. Most of the foundations have wonderful pamphlets on moving those rugs out of the way, putting handrails up, providing maneuvers to get in or exit a vehicle, and other very important information that is so needed.
However, when one is truly in the caregiver role, those things often lost are patience, as well as that reminder to show empathy. Always allow a person with Parkinson’s the dignity they so deserve. They did not invite Parkinson’s into their lives. It came without choice and at quite a cost. Remember to help with laughter and lightness. Read stories aloud, listen hard to everything you are told and be interested. Never accept that you don’t have the time to show proper respect.
It is these things I think are so important to make you feel good inside. When the person you are caring for is able to have an easy moment, perhaps dance when their meds are “on,” and just feel taken care of in the softest ways, that softness returns to you.
Hint: If you get frustrated, take that walk outside, breathe deeply, remember you are an angel in disguise, and be proud. What you are giving is better than any gift you could ever give. Yes, everything tough in life is what seems to provide us with the best rewards. Caregiving is a quality that might test you to your limits. It is also one that gives you pride you may not have ever known before. Be proud.
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.