mental-health

Most CarePartners are well aware of Bradykinesia, the physical slowness that accompanies a Parkinson’s diagnosis. It is important to understand the effects of Bradyphrenia, slowness in brain processes, too.

Those Brady twins, as I have come to think of them, are the bane of this Parkinson’s CarePartner’s existence. They work hand in hand to slow down everything my husband tries to do. It is no wonder that he feels exhausted when he is having to consciously work with his brain and body to do activities that were once automatic. He pushes back on the physical challenges by exercising. Staying active has helped him slow the progression of symptoms and gives him some semblance of control of his body. We can only hope that this activity also helps speed up the processing centers of his brain, but it’s much more difficult to gauge.

One of the questions his neurologist asks is whether he can do complicated or multi-step tasks and the answer is no. He used to be able to handle multiple challenges easily, but now has to have directions broken down into smaller steps. It isn’t that he doesn’t have the capability, it’s that his brain must work through each step and send instructions to his body before moving on. It becomes a difficult and tedious problem for both of us as I try to help him and often just make things worse.

I am learning to practice patience and step away so he can complete things in his own way and his own time. I am learning to ask single questions and wait for his response before adding to the conversation. I am learning to let him know when we need to hurry and ask if I can help or take over a particular task to get it done. I am trying to be respectful of the man who is trapped in a body that becomes more difficult for him to manage every day thanks to Mr. Parkinson and those darn Brady twins.

Even when not actively engaged in care for your loved one, you may find that they are always present in your thoughts.

I think about the Willie Nelson song, “Always on my mind”. My husband is always on my mind, that is to say I am always on alert, listening to make sure all is going well for him. It’s not necessarily a bad thing, but it is also not always a necessary thing. Nor is it a healthy thing for me.

When I am constantly on alert, the stress causes my cortisol levels to rise. Many studies have been done with family caregivers of people with dementia, but I am here to say that the same feelings exist in any person caring for a loved one with a chronic illness. It’s like I am always in a fight or flight mode, waiting for the next disaster to happen. I love those times when my husband takes a nap or sits down to read for a while because I can let go and take a break. I’m able to step into standby mode for a little while which gives my cortisol levels a chance to normalize. And yet I will catch myself looking over to make sure he’s still breathing, how crazy is that?

As a CarePartner, I know I must stay healthy in order to provide the care he needs, but how can I do that when just being here for him may be a threat to my wellbeing? There are techniques for alleviating stress, I know them and need to use them. There are opportunities for me to get away, I must take advantage of them. Finally, I can maintain an awareness of my own feelings and do my best to keep my husband always on my heart, just maybe not always on my mind.

For more information on what cortisol is and how it functions in our bodies check out this article I found on the Cleveland Clinic website entitled simply Cortisol.

Dealing with disappointments can be really challenging for the CarePartner and the Person with Parkinson’s Disease.

According to Google, disappointment is defined as “sadness or displeasure caused by the nonfulfillment of one’s hopes or expectations.” Unfortunately, it comes coupled with anger, frustration, loss, sadness, all feelings I know well as CarePartner for my husband with Parkinson’s Disease. I know he is also facing this to an even greater degree in his daily battles. Everyone will encounter disappointment at some point in their lives, it just seems like we get to do it so much more often these days.

I continued searching my friend Google for advice on how to deal with disappointment and found some helpful information on the Harvard Business Review website. Granted it didn’t have anything to do with being a CarePartner, but the coping skills they shared seemed universal. They say that if I take the time to understand why I am disappointed, then look at what may be possible, I can adjust my expectations to look for a realistic solution that works rather than dwell on what doesn’t. This matches my husband’s approach of focusing on what he can still do rather than what PD tries to tell him he can’t. I like it.

Daily Caring, an on-line resource for Caregivers, doesn’t directly address disappointment but they do have a great article on how to deal with “The 7 Deadly Emotions of Caregiving”. They talk about the importance of acknowledgement and suggest healthy outlets for my difficult emotions. They stress the value of connecting with others and understanding that my feelings are normal. It’s okay for me to be angry, frustrated, resentful, sad, but I must find healthy ways to cope. Disappointment is going to be a part of my journey, I simply need to make sure I don’t waste more thought on it than it deserves.

Find the article from the Harvard Business Review “Dealing with Disappointment, by Manfred F.R. Kets de Vries” here and “The 7 Deadly Emotions of Caregiving: How to Cope” here.