Written by Connie Carpenter Phinney
In addition to our regular panelists, July’s Care Partner Meetup featured a special guest: Dirk Labuschagne.
Dirk has worked as a chaplain in the Neuropalliative Care Clinic at Rush University for the past three years. Originally from South Africa, he is involved with chaplaincy training at Rush University and was trained at a Presbyterian seminary. As usual, Davis Phinney Foundation Executive Director Polly Dawkins was our moderator.
In addition to reading these notes, you can watch a video recording of July’s meetup below. Also, consider subscribing to our YouTube channel to be notified every time we upload a new recording.
Our next Meetup will be on August 6, 2024 and will feature the return of another special guest, Mark Mapstone, PhD. If you haven’t already signed up to attend our sessions live, you can do so today.
Download an audio-only version of this meetup.
MEETUP NOTES
Palliative Care Defined
At the start of the meetup, Dirk explained that palliative care aims to help you live as well as you can for as long as you can. This practice involves physical, emotional, and spiritual support and is often facilitated by the collective effort of professionals such as Dirk. Palliative care focuses on providing relief from symptoms and improving quality of life for those living with serious illness.
THE Chaplain’s Role
Dirk clarified that a chaplain isn’t providing answers to life’s existential questions but spends more time listening to patient and caregiver concerns. At their best, a chaplain creates anxiety-free space for a person who is wrestling with their own beliefs and questions. The chaplain’s role involves being a conversation partner, and Dirk said that he often does this work directly with care partners.
Describing his work, Dirk said he might start by getting acquainted and asking us how we see the world and about our belief structures and values. From there, Dirk said that a chaplain might help us sort out the question of how illness works and why difficult things happen. While there are no easy answers, Dirk said a chaplain should give space to ask and discuss the hard questions.
Dirk added that he spends much of his time with care partners because so few of us can be truly honest to others about how we’re feeling, and the kind of questions and struggles that we have are unique. Acknowledging the scope of the care partner’s experience, Dirk said, “Sometimes it’s helpful to just have a kind of separate space to really say, ‘Goodness, this is hard. I’m struggling, and this is not how I pictured my life.’”
What is the difference between a chaplain and a minister?
Dirk explained that a ministerial pastor is a leader in a specific religious community while a healthcare chaplain usually has a graduate divinity degree including year-long training and 2,000 hours of supervised experience to become a healthcare chaplain. In the healthcare setting, chaplains are trained to be mindful not to impose their own beliefs. They understand how vulnerable the population they work with is, and their work is to provide support and comfort, most often by listening.
Chaplains sometimes receive a referral from the doctor who says the patient is kind of disillusioned and not currently active in a church but would like to meet. Dirk said it’s important for a chaplain to meet every person where they are in terms of their own past spiritual experience and start with the more reflective aspects of prayer and meditation and being open to dialogue and reflecting together.
How do we find a chaplain?
Start with your healthcare provider. If you are seeing a specialist at a movement disorders center or neurology clinic you might ask what kind of resources they have available. The clinic may not have a chaplain who’s dedicated to that team, but there may be a chaplaincy department within the hospital or hospital system. In our conversation, Dirk noted that it sometimes takes some advocacy from the physician to reach out to that department to connect you. If possible, ask for a chaplain trained in the neuropalliative care clinic.
Some listeners suggested talking to friends who might help you find a church that could provide this service. Whether through a clinic or a church, a key point is you won’t find a chaplain if you don’t seek them out. You must start somewhere and will probably need to be persistent.
Gail talked about rituals being helpful to stop our brains from constantly beating us up. Creating ritual can help you feel less guilty or judgmental, and this can ultimately give you a break. She said she wished she could put her brain on a shelf to stop it being so active, especially when her husband, who passed away from Lewy Body Dementia three years ago, was suffering.
Pat said when things get tough, it’s good to take a moment to breathe and accept we’re here in this life to be challenged, grow, and progress. In thinking this, he’s able to convert the challenge to opportunity.
What does a good day look like?
In a recent episode of the On Being podcast, the host, Krista Tippett, interviewed of Dr. Atul Gwande. Dr. Gwande wrote a book called Being Mortal: Medicine and What Matters in the End that also addresses the deeper questions of living a life of meaning. Dr. Gwande talks about how research shows that creating a palliative care team will not only enhance quality of life but often prolong it. When orchestrating meaningful palliative care, instead of focusing on end-of-life planning, a more important question to ask is “what does a good day look like for you?”
This is an important question for both the person suffering from illness and their care partners. Asking it keeps us grounded in the moment. We can’t take away Parkinson’s, but we can strive for better moments. Slowing down is a good place to start, especially if it gives you the space to ask what you can do to improve the quality of your own life apart from your person with Parkinson’s. Is it by taking a walk? Doing art? By practicing meditation? A matter of just carving out some alone time? Finding help? If you can do that, it might help you through the harder times and hopefully help you not simply survive but thrive.
Bad days happen, too
One of our listeners, Bruce, shared a quote from a person with multiple non-Parkinson’s-related disabilities who said, “I have good days, and I have better days.” Pat agreed with this but also stated there are bad days, and he reflected on a conversation he had that day with a family member who rarely sees him and his wife but criticized his caregiving. Sometimes well-intended advice can land as an unnecessary, uninformed, and unproductive criticism. This can make a hard day harder.
Dirk added, “Chaplains and social workers are helpful as well to just have a safe space where someone can voice these difficult emotions that you’re feeling and help get it out.” It’s important to be able to identify and acknowledge hard times from the care partner perspective. We often get mired in how our person with Parkinson’s is feeling and neglect our own tough times.
Gail said that there may be times when “everyone’s telling you you’re doing a great job, and you’re thinking, oh, I suck at this. I’m a horrible caregiver. All we do is beat ourselves up.” She finds that in a group setting with other care partners who are on the same path, you can find not only empathy but support to help lift you from negative or spiraling thoughts. Gail continued, “You have to look for care. But you have to be careful. You gotta get people that will tell you the bad stuff.”
Gail went on to say that in order to understand how shared the experience truly is, you need to find people who will share all sides of the caregiving experience. Doing this can ease your load. In reference to feeling sorry for being better off than the person with Parkinson’s, she said, “We weren’t in charge of rolling the dice, right?” But we all understand the feeling and acknowledge the challenge of managing our own issues along with the person we care for.
Following Gail’s observations, Dirk offered that we are often our own worst critics. He said, “We say things to ourselves that we would never say to someone else in a similar position. It’s really isolating, and you need connection, especially as it allows you to really have some grace for yourself, as you have grace for others.”
Nobody ever asks what about me?
How do you respond when you ask them how they are and they say “fine?” Dirk said he can tell there is often more there, and when he hears this answer, he tries to invite the care partner to share more with him. “There’s probably a whole lot else there,” continued Dirk. “And if they want to go there–if they want to say more about that with me–I can hear it.”
Dirk went on to say, “We have labeled the caregiver as this kind of like selfless, ever-sacrificial kind of person who has none of their own needs and is just eternally willing to keep giving and giving. And I don’t think that is a human person, right? No one can give up all of themselves without pausing to restore. In fact, I think [care partners] need to do that more than even the person they care for in some ways, right?” He suggests we have to press against expectations from others and care for ourselves, too.
In other meetups, we’ve talked about other ways to let out our feelings, like journaling to help clear your mind and release pent-up emotions including our fears, doubts, concerns, and anger. Dirk added that poetry can help and suggested listening to the podcast Poetry Unbound, an exploration of the world of poetry and how it connects to the human experience. He also said reading the book of Psalms from the Bible can also be a source of support. Some from the audience added that listening to music is another way to calm yourself and boost your spirits.
We hope this helps! Thanks for reading and extra special thanks to Dirk Labuschagne for joining us and sharing his wisdom.
Until next time, take care.
ADDITIONAL RESOURCES
Everything You need to Know About Caregiving for Parkinson’s Disease
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