We wanted to talk about the emotional and mental effects of Parkinson’s, because the mental health of both the patient and caregivers can have so much influence on symptoms. Not only are symptoms increased when negative emotions run rampant, but the disease itself causes so much pain and confusion, creating a “vicious cycle.”
When H and I(M) visit our grandma, we usually go with a mixture of anxiety and joy. We love this wonderful woman who raised us, so much! She is an amazing person. Some of her best attributes include humor, strength, wisdom, liveliness, generosity, and spunk. However, these qualities often become hidden behind her symptoms. On bad days, which happen more often than not now, she is exhausted and struggles to even lay down comfortably. Here eyes aren’t clear and her body will not let her rest. Where she was once eager to talk and play games, she now just wants to lay down and watch TV.
If we are lucky, Nee Nee will want to look at pictures or talk about the next big thing in our lives. She also likes to paint, and on good days, it can be so fun to help her create beautiful artworks. One of the worst things about this disease is that it takes such a toll on the victim and there isn’t much that can be done. From an outside perspective, it is almost as if the person is losing themselves. The things they once could do are no longer possible, even with help.
Watching our grandma go from a vibrant woman to someone who can barely do anything is heart wrenching. We can’t even imagine what SHE feels like. Some of the most common emotions she shows us are irritation, depression, and anxiety. We also feels these emotions, often at the same time as her, so it can be difficult to interact with each other peacefully.
This is one of the more subtle emotions both patient and family experience with Parkinson’s disease. Sometimes it creeps up slowly, while other times the irritation is present from the moment we see each other. For Nee Nee, the irritation usually stems from trying to complete a simple task, often for an hour or more, before we arrive. She also gets frustrated if she has been wanting to go somewhere or get something, but she knows she cannot drive to get it on her own. For us, the irritation comes from wondering why we can’t just have fun with our grandma anymore, instead of spending hours helping her take care of chores.
When people get annoyed, they often end up doing or saying small, hurtful things to one another. I am extremely guilty of this, especially if I have had a long or busy day. Even though I know that Parkinson’s disease is the thing to be mad at, I still take out my frustration on my grandma with a rude or rushed tone of voice. She loves me so much that she doesn’t even care. Often, H reminds me that I need to be calm and loving towards Nee Nee, being the more controlled one in these situations.
So how do you get over irritation to support your loved one? How does your loved one move on from their frustration so they can stop shaking so badly? H and I have found that taking a moment to cool off is helpful. We will step outside for a few minutes or switch tasks. Nee Nee likes to do something with her hands to calm down. Although we try to do everything for her, letting her do something is usually all it takes to make her happy. The independence Parkinson’s disease victims once had is often so important that just giving over a little bit of your control as a caregiver can work wonders.
Depression is something we have experience with in our family. Parkinson’s disease only makes this emotion worse. H and I have both struggled with depression all of our lives, and we know it is a heredity mental state. Our levels of knowledge may differ slightly, as I tend to not know when this emotion hits me anymore (too much going on with work, school, and other things can really distract you!), but H usually clears things right up for me.
Nee Nee experiences depression almost all of the time, which is no surprise. Since we are being real about Parkinson’s disease, let me just say that this is possibly the worst emotion for her. Her depression hits when she is alone and when no one can come see her. Nee Nee has been a teacher in multiple respects for her entire life and has been surrounded by friends and family. Now, she spends most of her time by herself, with people who do not have the same mental faculties as she, or with people who do not understand that she still has a bright mind. This crushes her.
We both know that when she calls crying that she is lonely. This social butterfly now has to deal with the fact that her friends, and sometimes her family, will not provide the social support that she blessed many with through her entire life. As a caregiver who has a full time job and a home to take care of, as well as school, this is extremely guilt inducing. I struggle with guilt issues, so this creates more depression.
Nee Nee feels sad because of many things, including her lack of control over her own body. Her life has been turned upside down, but she is strong. She knows that she must persevere through every stage of this horrible disease. She has often spoken of how God loves us all and I take heart in, even on her darkest days, that she knows the love of God.
Anxiety is another big issue we deal with. I can’t even count the times that Nee Nee has had panic attacks. Although our family has struggled with anxiety for years(most of us have it as a condition), this emotion is really a whole new monster when coupled with Parkinson’s disease. Nee Nee worries about so many things, beyond the scope of what she worried about before her Parkinson’s progressed this far. Not only does she have to handle her normal anxiety, she has a plethora of Parkinson’s induced concerns. These include things like knowing that her glasses, cellphone, and TV remote are close enough to reach at all times and wondering if those she loves will help her for hours at the store.
One of the worst examples of this anxiety occurred a few moths ago. She had a string of very bad days. On one of those days, she fell out of her motor chair (which she is no longer allowed to use per doctor’s orders) and hit her head on the concrete. The next day, the chair (which had a movement delay) caused her to run into her bed. She broke some of her toes and bruised her foot horribly. The next day, we received a phone call that she was going to the emergency room because she thought she had a stroke. She complained of numbness in her arm and was experiencing leaning, where her top half would lean all the way down in her chair to one side.
We all thought these signs could point to a stroke, but something seemed off about that theory. Our first thoughts were “She is speaking so well.” and “Her movement today is fine.” and “She has been leaning for a month now.” and “The fall happened because she ran over the curb outside.” She confirmed all of our doubts. At this point, we knew she had most likely convinced herself that the consecutive bad days were caused by a stroke. Her anxiety was so high from experiencing the new symptoms of arm numbness/weakness and leaning, she was sure the worst was happening. The doctor concluded that she did not have a stroke, thank God.
Handling this level of anxiety was very hard. We spent a large portion of our night waiting around at the hospital, and it was even worse for her. She missed medication, missed dinner, and had to deal with having no dignity, as many hospital patients do. The confusion and anxiety associated with her symptoms could have been alleviated if she had spoken to her doctor as soon as she noticed them. This is something she is notoriously bad at, unfortunately.
The most important thing we discovered out of this is that openness and honesty about symptoms, with everyone involved in care, is vital. By understanding that anxiety is part of Nee Nee’s particular disease and that she has clinical anxiety as well, we know that we have to look at things more objectively, with less panic. Doing this is hard, especially when you have anxiety too. However, by focusing on the fact that Nee Nee is what matters, not our emotions, we can stay calm and work through our own emotions better.
When it comes down to it, everyone’s emotions must be respected. From a caregiver’s perspective, handling irritation, depression, and anxiety can be done by remembering you are there for someone you love. H and I do not forget our own emotions or neglect to take care of them, we just try to stay calm and peaceful, for Nee Nee’s sake. For Nee Nee, it is important to remain vigilant about symptoms, take the proper medications, speak openly, and trust that we are there for her. There will always be bad days associated with Parkinson’s disease, but we can make them easier by understanding our emotions and knowing how to deal with them in a healthy way.
**We are not mental health experts and do not claim that any of the tips offered in this article will help in any medical capacity. These tips are intended to share what we do and are not provided as medical advice. If depression or anxiety affect you or your loved one, speak with a healthcare professional.**