Our friend Denise Dagan shared her book review of “Love, Dignity & Parkinson’s: from Care Partner to Caregiver,” by Terri Pease, PhD. Though “Parkinson’s” is in the title, this book will be of interest to spouse caregivers coping with Lewy body dementia and the other atypical parkinsonism disorders. It is directed at spouse caregivers. Denise highly recommends the book. Her brief summary is below.
Denise Dagan’s Summary of
“Love, Dignity & Parkinson’s: From Care Partner to Caregiver” by Terri Pease, PhD
Just a year after her husband died with Parkinson’s Disease (PD), Terri wrote 120 pages just for spouses that gets into the nitty-gritty of “being in a partnership when PD is part of the picture.” Throughout the book she acknowledges the tremendous losses a spousal caregiver feels as the love of their life changes in ways that significantly impacts their relationship. She balances that with lessons in how to lovingly communicate, be the decision-maker when needed, and be mindful of your loved one’s dignity as well as your own health and wellbeing. I love that Terri includes a check-in at the end of each chapter. These check-ins act as speed bumps, asking the reader to pause and think about what you just read, how that information applies to your situation, and what action you should take (if any).
Part One helps readers understand that that changes of Parkinson’s Disease (PD) in the brain profoundly impact the way it interacts with the body. Terri gives readers a heads-up about the impact Parkinson’s will have on every aspect of your life together and asks that you learn about the disorder, talk with your spouse about what each of you want, and put a plan in place for his/her care AND yours. The check-ins lay the groundwork to have an easier time down the road as a PD care partner.
Part Two discusses the impact Parkinson’s has on a person as a partner and how PD might affect your life together. The check-ins are exercises to help the reader make adaptations and adjustments to sustain a loving and dignified relationship alongside their Partner with Parkinson’s (PwP).
It is understood that PD affects both the body and the mind, but most people unfamiliar with the disorder are also unfamiliar with the non-motor symptoms, like facial masking, lack of empathy, depression, anxiety, and apathy. Terri points out that many a spouse has taken these changes as signaling a breakdown of the marital relationship and divorced their husband, only to find out years later that “what looked like disconnection was dopamine loss instead.”
To sustain a positive relationship in a PD marriage, it is the caregiving spouse who must adjust. Terri uses the acronym S.T.E.A.L.S. to describe how PD changes your partner and your relationship. S.T.E.A.L.S. stands for sleep, thinking, elimination, affection, learning, and sex. Terri explains how PD affects each of these aspects of life and how a caregiver might respond kindly to maintain dignity and calm fears, while at the same time taking action in the best interest of both partners. Sometimes, the lesson is how to explain to your spouse that you’ve made a difficult decision, like sleeping in separate rooms. Other times the lesson is a shift in the caregiver’s perspective, like understanding that if-then thinking is a thing of the past and if you want your spouse to help you carry in the groceries, you will have to ask.
Throughout, Terri focuses on the caregiving spouse so that the check-in questions ask the reader to think about how much are changes in each of the S.T.E.A.L.S. areas affecting them, what adaptations have they made in each area, what adaptations might they consider making, and whether they should seek help.
In chapter four Terri talks about the “emotional bank account,” present in every relationship. In a healthy relationship, both parties put in love, kindness, caring, forgiveness, money, work, and countless other things that build up their partner and strengthen their partnership. From time to time each partner draws on that storehouse of well-being to get them through tough times. Some partnerships have deep reserves, but others have much less in their “bank” with one partner having made most of the deposits and the other taking more than they put in. Still other relationships seem nearly empty, with little give and take between them.
With this metaphor in place, Terri discusses the challenges of caring for another person through to the end of their life while maintaining the PwP’s dignity as well as your own health and wellbeing. The check-in asks the reader to evaluate their own relationship bank and discover where and how you will need to reach out for help or even say “no” to some aspects of caregiving. I love that she leaves the door open to leaving the relationship.
Chapter five acknowledges that each person has a different capacity for caregiving and offers this lesson that expands all readers’ caregiving skill set: at some point a PwP may become less able to recognize and understand their own feelings. Like communicating with a child, you may have to learn to interpret meaning from meager words and behavior. If you can voice what you believe your PwP feels and what they are trying to convey, you may be able to communicate in calmer and more effective ways.
Terri goes on to discuss different types of relationships and the expectation some PwP have that their spouse will take on every aspect of the PwP’s care. This is impossible for a single person who will certainly experience burn out and damage their own health over the course of years. Terri encourages caregivers to put their own wellbeing first and ask for help with caregiving when needed. Doing this requires caregivers to set boundaries. The check-in at the end of the chapter asks readers to evaluate whether you are a natural caregiver, and answer what activities of daily living (ADLs) can your PwP do for themself, what ADLs do you want to help with, what ADLs will your PwP need help with eventually, and how will that help be provided?
Caring for yourself first so you can be well and able to care for your spouse, is an act of love. To do this, it helps if caregivers understand what they find tires them out and what is re-energizing. In a nutshell, get help making sure the things you find tiring get done (you don’t have to do them yourself!) and put on your calendar activities that you need (sleep, prayer, exercise, socialization, etc.) or most enjoy (grandchildren, hobbies, clubs, etc.).
In chapter eight, Terri warns readers that you will eventually lose your partnership with your spouse. She urges readers to begin learning now how to take over management of every task and chore associated with your home, finances, and your PwP’s care. This can be challenging in relationships where one partner defers to the other. Nevertheless, there will come a day when decisions must be made (taxes are due) and the usually deferring spouse must step in (hire a tax preparer) to divert a negative outcome (penalties).
As part of this process and helpful in handling difficult behaviors, caregivers should begin right away to set the expectations for how their PwP will treat them. Start building new habits of communication so your PwP will recognize and value when you say “yes,” and respect when you say, “no.” Learn how to “stand in the neutral middle” between your feelings, needs, and worries on one side and your partner’s reactions and behavior on the other. Terri gives very personal examples for how to do this.
Should your spouse’s cognitive changes dip into the realm of dementia, Terri recommends the videos and podcasts produced by Teepa Snow, an online dementia care expert who will teach you how to approach them with compassion and sensitivity.
In the final chapter, Terri talks about the end of your relationship with the PwP. She advises caregivers not be slow in reaching for the support that palliative care and hospice organizations can provide. Once it is clear that medical interventions are not going to change the course of the illness, it is appropriate to engage these services to make your PwP’s life comfortable and dignified. Palliative and hospice care can be provided to a PwP for years prior to their passing and be a tremendous support for caregivers.
Terri respects the decision some people will make not to become a caregiver, but to leave the relationship instead. Most will stay because of religious, cultural, or other obligations, and love. All will grieve for the losses Parkinson’s brings to their relationship long before the PwP dies.
The back of the book has three appendices:
* Resources for learning about PD and finding support groups
* Resources about sexuality, disability, and aging
* Ideas for a Date With You (re-energizing activities for caregivers)