mental-health

Getting to know the people in your support network for more than the Parkinson’s connection may prove to be beneficial as long as differences in values don’t derail a much needed relationship.

We were having a family dinner a while back and started discussing politics, something we mostly agree on. I shared that we have friends who don’t necessarily hold the same ideas in our PD network and it is interesting to consider how they come to their views. Someone said that they believe all of their friends are of the same mindset, that is the connection that brings them together. In that moment I discovered another reason to be thankful for my husband’s diagnosis. It broadens my world to include those who may not have the same philosophical beliefs yet who share a common enemy, Parkinson’s Disease.

This disease isn’t selective so the people in our Parkinson’s community come from all different lifestyles and backgrounds. It’s easy to discuss the common thread that brought us together which is our hatred of PD, it’s not so easy to talk about current events. I do think that topic could lead to some very interesting conversations. I wouldn’t want to see our different viewpoints split us up because I need these folks in my life. While I would like to know them better as individuals and let them know me, I’m not sure quite how to make that happen.

The greatest value of being a part of this community comes from our shared experiences. I can talk openly about challenges I face in caring for my husband and ask their advice with difficult decisions. It is great when I can pick their brain on practical issues as well. They often have knowledge that can help me with daily challenges outside the PD world. Maybe someday we can find a way to respectfully discuss our differences and, I suspect, agree to disagree. The support we give each other is based on values and compassion that go beyond thoughts of politics or religion. In this friendship, does the rest really matter?

The Parkinson’s community is larger and stronger than many of us realize and includes many wonderful and welcoming people. You never have to travel this journey alone.

I first learned this concept when I finally found the courage to reach out to a local support group. My contact was a phone call to one of the facilitators, a gentleman who had been diagnosed with Parkinson’s a few years earlier. He explained that he and his wife led a monthly group and shared some of his story while encouraging us to come to the next meeting. He assured me that we would be welcomed and that we would find good support and ongoing resources. We spoke for almost 10 minutes during that call and I understood that I had found someone who could help both of us as we faced uncertain and difficult times ahead.

When we got to the meeting, his smile was warm and welcoming as he brought us in and introduced us to his wife and then to a few others in the room. His Parkinson’s symptoms were mild yet visible; some of the others around us appeared further along in their journeys. It was obvious that we had found ourselves in the midst of a like group of people. I was so thankful that I finally gathered the courage to reach out because it was obvious these folks would have much to offer us. It actually felt like we had found a new family.

These memories are close to my heart today as this lovely man passed in his sleep last week. His contributions to the local PD community were so valuable. I hope his journey ended peacefully and that he knew how much he meant to so many of us. Rest in peace my friend and know that you helped us connect with a lifeline on this journey. You will not be forgotten. 

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.