Notes from the Care Partner Meetup: September 2024

Questions from the Meetup

Since the conversation during the meetup centered around a handful of questions, these notes will highlight those questions and expand on aspects of them.

Please note that some quotations below have been edited for clarity and brevity. 

Dementia and Executive Function

We asked Dr. Mapstone, “Why are care partners not told early on that a person with Parkinson’s will most likely have some form of dementia due to the demands of the disease on his or her brain–and why are we not told that this will likely relate more to executive function and decision-making?”

Dr. Mapstone said, “There are still folks who hold on to this idea that Parkinson’s disease is primarily a motor disorder, where we get the tremor the stiffness, rigidity, the slowness of movements known as bradykinesia, and the gait problems.”

He went on to say, “What we’re focusing on today is more the cognitive and behavioral aspects of Parkinson’s. These are becoming more appreciated but they don’t quite get out there to everybody at the same rate. There are early adopters and people who are on the front lines who see this because they’re with people with Parkinson’s all the time. They know the cognitive impacts. Clearly as a care partner for a person with Parkinson’s disease, you are also on the front lines, and you see this day to day.

Dr. Mapstone also acknowledged that a small percentage of people with Parkinson’s will have minimal or even no impact on their cognitive function throughout the course of their life with Parkinson’s, but that most will experience cognitive impacts and the most common impact is to executive function. He described executive function as the cognitive process that results from the frontal lobes of the brain, which is highly specialized for planning, decision making, and control of some of our primal instincts.” Dr. Mapstone used the example of having the self control to not say inappropriate things in public or control one’s urge to eat too many cookies. This kind of self-control may be degraded or slowly eroded by Parkinson’s. 

These challenges represent a kind of dementia, which Dr. Mapstone noted “refers to a loss of something that was there before” and occurs slowly over time. Dementia affects daily function and can have many causes, of which Parkinson’s disease is one. Of course Alzheimer’s disease is another, but there are many others, including reversible forms of dementia like those caused by sun stroke or Vitamin B-12 deficiency. Dr. Mapstone also acknowledged that a person’s energy levels are important for cognition, and we know people with Parkinson’s are clearly exhausted from not only their inability to sleep well but also by the rigors of the disease. 

Reflections from the Panelists

Gail said she wished she’d known more about the cognitive side of Parkinson’s. This would have helped when her husband uncharacteristically forgot her birthday, since she could have understood it was Parkinson’s at play and not him. At the time it made Gail feel guilty for missing the clues or understanding Parkinson’s better. Nothing and no one prepared her for these sorts of cognitive impacts. Gail also said she felt horrible about mistakes she’d made and focused on them, rather than all the good things she was doing and had done. She reminds us, in retrospect, to be kind to ourselves.  

Pat said he also experienced this with his partner who was a teacher and started to forget things, which prompted her to seek early retirement. He said he couldn’t remember when executive function wasn’t a problem, it’s difficult to trace the origins.  

After listening to Gail and Pat, Dr. Mapstone said, “It’s important to acknowledge these feelings of guilt or inadequacy by the care partner, but also to forgive yourself and accept the fact you can’t always do things correctly. We will all make mistakes and, hopefully, they are not big ones. And hopefully it is coming from a place of caring and compassion. We need to turn inward to give ourselves grace for our mistakes and make it a regular routine, daily or weekly, to acknowledge you are doing the best you can.”  

He also advises us to find support and help for our person when possible so we can get some time for ourselves. If your person with Parkinson’s is still quite able, you can carve out that time for yourself more easily. As things progress and you need support, you will hopefully be in a place to continue making time for yourself with some planning. 

A Note About Caring for Parents

It’s important to acknowledge the adult children who might be listening to or reading this and whose parent has Parkinson’s. Changes in executive function and behavior can be confusing for them as well. In many ways, the old relationship has shifted for them, too, and they may no longer trust their parent’s choices.

It’s important for them to bring this up and try to counsel their parent in way that will be understood. And it may require a third party–a trusted friend perhaps–who can help navigate the changing dynamic, due to the imbedded nature of the parent/child relationship. It’s incumbent on the spouse–if possible–to keep their adult children informed for many reasons, and one of these is that every care partner needs to be able to recruit help from time to time, and it is best for people who help to understand the situation. 

Guilt and Self-Recrimination

Pat and Gail both asked why we focus on the things we feel we have done wrong, which leads to guilt and self-recrimination?  

Dr. Mapstone said this is where we can drill into mindfulness techniques to teach ourselves to accept and let go. There are many apps you can access on your phone. Calm is one, and I like the Daily Trip with Jeff Warren. It’s a ten minute/day commitment and can help ease your mind and lift you out of your negative thinking.

A thought: the Davis Phinney Foundation motto: Every Victory Counts was created by Davis as a way of acknowledging the good things that happen every day: a hug, a nice walk or bike ride, a good night’s sleep. It’s important to pause and take in what is good, and to try to not to stew over what messes with you.  

Pat also acknowledged feeling the pressure of maintaining his own mental well-being and Gail noted that there are many demands on him–and many of us–both at work and at home. We need to tease out what matters and learn to let some of it go. 

Marriage/Couple’s Counseling 

A member of the audience asked about marriage/couple’s counseling.  

Dr. Mapstone said,

I feel very strongly about the need for insight oriented psychotherapy, which is the ability to sit with somebody who’s going to guide you through this introspection that we’ve been talking about. Lots of times we go through our days in our lives without really understanding why we do what we do. By pulling out those feelings that are driving our behavior and putting them on the table, we can look at them and say, Why do I feel that way? What is making? What’s the cause of what’s the root cause of that?

Many of our behaviors are rooted in basic fears. These are things like insecurity, the fear of being left alone, trust and mistrust. A lot of very basic fears are driving some of our behaviors, and if we can understand the relationship between this behavior which might come out as aggression or irritability, or resistance–we might actually learn it’s coming from be insecurity, or a failure of trust.

There is potential for growth at any stage, and a good therapist will help you understand your reactions and feelings.

Another audience member asked if it can be “too late” for counseling. As part of their question, they said, “What if we’ve been pushing for new things and change for many years without any change in the relationship?”

Dr. Mapstone said the phrasing of this question might be a red flag indicating mild to moderate hopelessness or depression, which means they should definitely visit with a therapist. But he qualifies this to say it doesn’t always need to be a paid therapist but someone who will listen, like a friend or your chaplain. He said quite often he hears people say they have been married a long time–3 or 4 decades–and their person has changed a lot with Parkinson’s and simply aren’t the same person. This is one of the hard parts about Parkinson’s; understanding what is change due to aging and what is change due to the disease. 

Another audience member said, “I hate how our marriage sometimes seems almost like a parent child instead spouse/spouse relationship. How can I pivot back?”

I have this sensation quite often and it’s hard because we like to share in decision-making and often the present reality is that we can’t. This puts undue pressure on the care partner and on the relationship. 

Mark Mapstone said, “This is this is where you need to extract yourself out and use the information that we talked about today: this is the disease. This is not him or her trying to behave like a child. Their brains are different now, and often they simply can’t do this. It is extremely hard, particularly after many years of being with this person, to recognize how they used to be able to do this. It may be true that some people are being willful and difficult, but mostly it’s the disease acting out–not your partner.”

So you adjust and it’s important to try to keep the love in there: to keep hugging and kissing and holding hands, and remind yourself of where the attraction began, and know that a lot of it does not reside in their cognitive function any longer. It is within our capacity to accept, not deny the changes and keep rolling with them. This is equanimity–accepting the isness of the moment. 

Dr. Mapstone said, “Frankly, it sucks. This is not a fun thing to deal with, and it shouldn’t be but as an adult person who is now in charge of the couple moving forward. I think it’s important that you have the perspective and understanding of what the disease has taken.”  

Remember to Care for YOU, too

During this month’s meetup, we also talked about how everyone knows exercise is important for neuroplasticity, but also for just to feel good. We always lean into that for the person with Parkinson’s, and quite often forget to say you need exercise, too! Get outside! Take–or make time–for yourself. That is a huge prescription for all of us to remember. We lean hard into getting our person to Parkinson’s to their physical therapy, to their classes, and then we forget ourselves. So if you’re not taking care of yourself: start now. It’s never too late. 

Take heart knowing people like Mark Mapstone are doing research in this space working hard to not only identify blood markers, but also to better treat Parkinson’s. The future will be brighter, but it is taking time and often we feel like time is running out. Parkinson’s is so complex, affecting so many systems that we can feel overwhelmed and under-equipped. But you must prioritize yourself. It’s a prerogative, not a choice. And we are fortunate, we don’t have the disease, even if we do live adjacent to it and it is a constant challenge and worry. 

There are no magic pills available to treat dementia in people with Parkinson’s but exercise and consulting with your clinical care team are important. Be honest, take notes, make videos, and keep asking questions. We’ll see you next month.