Written by Connie Carpenter Phinney
Our October Care Partner Meetup featured the first person with Parkinson’s to join our panel as a guest. We welcomed Allan Cole, who lives with Parkinson’s, and his wife of 32 years, Tracey.
The Coles are a special couple who have been living with Allan’s Parkinson’s for eight years. They have two teenaged daughters and live in Austin Texas, where Allan is the Dean of the School of Social Work at the University of Texas. A self-described academic, Allan has written widely about his experience with Parkinson’s and created PDWise.com to share his experiences. Tracey is also a social worker and in the capacity she had she worked with people with Parkinson’s prior to Allan’s diagnosis.
This month, our panelists included DPF Care Partner Ambassadors Gail Gitin and Pat Donahoo. We were also joined by Polly Dawkins.
If you haven’t already signed up to attend our sessions live, you can do so today.
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An audio-only version of this webinar will be available soon.
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MEETUP NOTES
Tracey and Allan agree that Parkinson’s has enriched their lives.
During our conversation, Tracey said, “Our life together is incredibly full with all the people we have around us and also by helping people with Parkinson’s that have come into our lives.” Allan added, “It’s both something you don’t want, and something that, in some ways, you’re grateful for.”
I asked Allan and Tracey about what the hardest thing was for them, in consideration of their shared background in social work. Their answer was that they complement one another, but they noted that, even with their backgrounds, they don’t always “get it right.” They say their capacity to listen and have empathy serves them well. Being present for people is the core of social work and they have learned to meet each other where they are, not where they want them to be.
Tracey said, “In spite of the challenges, what is really key is to be present for each other,” but the Coles both acknowledged that there are many losses involved because of Parkinson’s and that listening actively and staying calm are keys for them.
SOME WAYS THROUGH THE EARLY DAYS
Somehow, the Coles say that they have found a way to keep humor through all the hardest times, but that’s not the only tool they use. Allan observed that Tracey gave him the gift of letting him “get where he needed to get” regarding his diagnosis and to do so in his own time. Allan said,
“Tracey believed I was going to be okay and knew it in her heart before I could even give that a chance. I didn’t know much about Parkinson’s. I assumed that my life was over, and you know all the things that are kind of, you know, characteristic of people who are naive. She knew a lot more than I did, and she helped me get up to speed, and I told people she believed for us until I could believe it myself.”
Speaking more about his decision to reveal his diagnosis, Allan said, “I was terrified. I thought, ‘I’m in the prime of my career.’ People are going to think I can’t do my job. How am I going to send my kids to college? For about 10 months I was silent, but then I had the two hardest conversations I’ve ever had: one with my parents and one with my kids.”
Allan admits that some of his initial assumptions about life with Parkinson’s were inaccurate, and he said, “For me. I wish I’d been public about [my diagnosis] sooner, because I carried a secret, and the secret started doing more damage to me than I envisioned being public about Parkinson’s would ever do.” He also said, as a teacher who encouraged his students to live and work with authenticity, it became clear that harboring a secret wasn’t an option. For Allan, it became a matter of conscience.
QUESTIONS FROM OUR LISTENERS
RESPONDING TO RESISTANCE
A listener asked about how to break through the resistance of a person with Parkinson’s who refuses to seek help other than medication such as physical therapy, counseling or support groups.
After suggesting that faith community leaders may be helpful with this, Tracey said, “I think that’s really hard when a person is experiencing so much resistance, but try to understand why [your person with Parkinson’s] doesn’t want to get the help.”
This is, of course, a tough situation. Parkinson’s is a disease of management, and if you fail to manage it, not only will be harder on the person with Parkinson’s, but it’ll be much harder on the care partner. What can the care partner do? It’s fair to ask for or recruit a third party to intervene.
On this subject, Allan added, “Tracey’s helped me understand that by my allowing others to care for me, I’m giving them something in return, just like they give me when they allow me to care for them.” He adds he has had to step out of the role he is used to in order to navigate Parkinson’s, and that this has included learning how to ask for and accept help.
NOT WANTING TO NAG
Care partners ask us often why they always have to be the nag. One factor in this is that we know apathy is often a big part of Parkinson’s. While it doesn’t affect everyone, if it does affect your person with Parkinson’s, they will be less likely to accept help or to seek other modalities of help which could be extremely beneficial to them.
If your person is unable or unwilling to cooperate, be sure to alert your medical care team. They might be able to alter the medication or help find another work around. As a reminder, apathy can be treatable so please tell your medical team when you are experiencing this.
Our longtime panelists chimed in on apathy, too.
Gail said, “I didn’t have the apathy problem so much, but I participated with my husband to help make things that were good for him fun. I went boxing with him. I went to Ping Pong with him. I went to spinning classes with him and after, we got his favorite coffee drink afterwards, and it became a date.”
Pat said, “Cidney came home after diagnosis in 2011 and said, I’m going to ride my bike across Iowa, and that began a long career of doing the Ride Across Iowa. And while apathy is a bugger that shows up on occasion, I help by getting involved and listening, and not make any rash decisions. I’m not always the best at it, but I try hard.”
CONFERRING WITH HEALTHCARE PROVIDERS
Another listener asked if care partners talk to their person’s care team with or without their person with Parkinson’s present.
The first thing to note is that in almost every circumstance, a doctor can’t speak to you—the care partner—unless the person being treated by the doctor has signed a HIPAA release form. This acronym stands for Health Insurance Portability and Accountability Act which was put in place to protect privacy but can also be a wall between you and your partner’s medical team.
I think you want to try to get those permissions soon, and the doctors can help you explain why it’s beneficial, especially where side effects of medicines are concerned.
Most movement disorder specialists we speak with consider the care partner to be an integral part of the team and would prefer to see you both together than just the person with Parkinson’s. Visits are always too short and they’re too important to miss any details, so we also have advocated for you to go to the doctor appointments and for you to record those conversations rather than trying to take notes. Phone apps like otter.ai can help with recording the visit.
Regarding going with her husband to appointments, Gail said one of her primary reasons to go to the appointments was that her husband wasn’t able to focus or hear the details the same way she did. Gail also said that to help streamline visits, she used to send an email to the doctor before each visit to explain what’s really going on day to day to help articulate her concerns.
As another way to help with visits to the doctor, Gail suggested keeping a notebook describing what happens between appointments and what happens at each appointment. Gail added that she would include notes about anything having to do with the disease into her notebook. She’d list all the meds and every doctor they had seen, including contact information, so she would have everything she might need to share with any doctor at any visit.
Tracey said, “We’re very fortunate because Allan’s primary neurologist engages with me. It’s not as though she’s just having a conversation with Allan.” Tracey adds the care partner has a wealth of information to provide and it’s important whether in person or by email to document the progress and the challenges.
If your doctor isn’t responsive to the care partner, it’s probably time to shop for a new one and this is hard work, and it takes time but try. Get on the waiting list. It might take you a year to change doctors. Again, Parkinson’s is a disease of management and must be managed well, so take all the steps necessary to find the best care, even when they’re difficult.
WHAT ABOUT WHEN THE DOCTOR ONLY WANTS TO SPEAK TO THE CARE PARTNER?
Another listener asked about the inverse of the previous problem. They asked how to manage when a doctor only directs questions to the care partner, even though the person with Parkinson’s is fully capable of speaking.
I relayed a time this happened to us in a teaching setting and the lead neurologist had to call out a resident/trainee for directing the conversation to me, not my husband. It’s important for the care partner to know it is fair to redirect the attention of the doctor who may not even realize they are doing it.
MENTAL HEALTH AND THERAPY RESOURCES
In light of their shared background in social work, a listener asked Tracey and Allan to share the resources they use, individually or collectively, for mental health and emotional therapy.
They said previously they’d been part of Power for Parkinson’s, which is an exercise group in Austin which also has information to share online. Tracey observed that this was helpful because there were other caregivers there that she learned to rely on.
Tracey also noted that she has a dear friend whose husband coincidentally also has Parkinson’s disease and a good circle of friends.
Both Tracey and Allan rely on friends they know with Parkinson’s and this is important: expand your circle to include others who are traveling a similar journey. Allan also talked about learning to play bass guitar and told us he joined a couple of bands which has also revitalized him.
HUMOR
A listener asked a question about how to find ways to laugh.
Gail said she and her husband often noted the absurdities of their shared experience with Parkinson’s to one another.
I talked about making faces in the mirror which helps ease the facial masking and is also extremely comical, especially when we both do it together.
The Coles said they have two daughters, and he likes to tell dad jokes in front of their friends. Lately, Allan has been experiencing more dyskinesia, so he’ll joke that he’s a rocker and pretend he has a bass in hand and play the air guitar. It helps to name it and make fun of it. He also told us one of his bands is called the Movement Disorder – another tell as regards their humor.
Watching funny TV shows together like Modern Family or Brooklyn 99 for example, can be fun and funny. Other tips include avoiding the news and listening to more music. It takes a lot of self-discipline in this world to not be sucked into the news trap, but I think it’s important and would advocate for literally changing the channel.
GRIEF AND LOSS
Responding to a listener question, Allan acknowledged that Parkinson’s is a disease of loss. He said that naming the experience and accepting we are going to lose things with Parkinson’s is an important step, but he also said, “the residue from those losses accumulates, and this can get more and more painful.”
Allan advocates for finding people with whom you can share your experiences, who can understand when you name them and your need to mourn. He said, “grieving is what happens to you in the wake of loss and mourning is what you do to get through it.”
Allan also acknowledges this requires a rebuilding and seeing the world through what you have lost. Loss just doesn’t happen to people with Parkinson’s, it’s the nature of life. To live is to lose, in some ways, but Allan added it can be life-giving to find the right circle of friends.
We, the care partners, need to honor what we lose. For many of us, it’s the diminishment of the person we fell in love with. I asked the panel how we manage when our partners are not as verbal as they once were? Care partners experience loss on par with their person with Parkinson’s, but care partners also need to express how we feel and to have our own losses understood.
CLOSING THOUGHTS
As care partners, it is crucial to not conflate the disease with the person we care for – they are not the disease. And it is fair to dislike Parkinson’s. Creating that separation may help you maintain empathy and a deeper understanding of loss for both of you. It is a lifelong conversation when you are diagnosed with an incurable disease.
Gail mentioned a note she keeps on her desk. It says, “Don’t sacrifice yourself to be a perfect caregiver. You can never really reach perfection, and this disease is ever-changing. Be kind to yourselves. Your inner voice judges you by overly harsh standards, we just have to keep on pushing and find humor in some strange way, laughing at the absurdity. And always, simply do your best.”
Thanks for reading and thanks especially to our wise and well-informed guests Allan and Tracey Cole.
ADDITIONAL RESOURCES
Our Every Victory Counts Worksheets
Synapticure: Movement Disorder Specialists by Telehealth
Making the Most of Your Next 15 Minutes with the Doctor
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WANT MORE PRACTICAL ARTICLES LIKE THIS?
You can learn much more about living well with Parkinson’s today through our Every Victory Counts® suite of resources. Each manual is packed with up-to-date information about everything Parkinson’s. Click the link below to order your manual(s).
Thank you to our 2024 Gold Partner, AbbVie, and our Silver Partner, Mitsubishi Tanabe Pharma America, for their ongoing support of these must-have manuals. Additionally, we’d like to thank Barbara and Dale Ankenman, Abby and Ken Dawkins, Bonnie Gibbons, Irwin Narter, Lorraine and J Wilson, and Gail Gitin in loving memory of Gene Gitin for their generous donations that allow us to make these resources available and accessible to all.
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The post Notes from the Care Partner Meetup: October 2024 appeared first on Davis Phinney Foundation.
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