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A New Perspective on Being a PD Care Partner

An Inside Look at Parkinson’s Disease Care Partners

Being a care partner for someone with Parkinson’s disease (PD) can be a difficult, but potentially very rewarding role. Making it even more challenging is the fact that the role is assigned without consent of the care partner, without any training and without the option of refusal. Care partners often lack confidence in their caregiving skills and are very unsure about whether they are performing their responsibilities adequately.
Dr. Kevin Klos would like to change that.
Dr. Klos is a movement disorders physician in Tulsa, OK where he has close ties to the APDA Oklahoma Chapter.  He has 20 years of experience taking care of people with PD and educating families, and has a particular interest in understanding the challenges of caregiving in PD. This is informed by the fact that he is also a care partner for his mother, Judy, who has PD. He is committed to helping his fellow caregivers with education and support to guide them on their journey with their loved one.  His main message is that care partners, despite all their misgivings, generally do an excellent job. I sat down with Dr. Klos for a conversation about caregiving.
Q: You are a movement disorders physician with more than 20 years of experience treating people with PD. What made you explore the topic of caregiving?
A: In my practice, I see my patients progress in their disease slowly over the years. The care partner role became more and more dominant with time.
When my mom was diagnosed with PD, I gained a new perspective on being a care partner and I wanted to explore resources for care partners. I realized that there was limited information that was directed specifically to caregivers.
I practice in Tulsa, OK, and in the past there has not been a lot going on locally for care partners. What I saw happening for example, was that an impromptu caregiving support group would develop on the side as the boxing class for people with PD was going on. There was clearly a need for care partners to learn more about caregiving from each other. Caregiving is not a role that you ask for, or that you can train for. It is a role that is thrust upon you. I realized that I wanted to explore resources for care partners and expand the resources that were available. I started by researching the area of caregiving among my patients.
Q: How did you investigate caregiving in your practice?
A: About seven years ago, I started a project in my own clinic, gathering information from both care partners and patients. I distributed comprehensive surveys and questionnaires, conducted anonymously during the clinic visits. Surveys from a care partner and person with PD pair, were linked. I also had my nurses extract information from the medical chart to couple it with the anonymized survey results, so we knew certain details about the person with PD, such as what stage of PD he/she was in.
The surveys were not focused on the

A Discussion with Parkinson’s Disease Care Partners

What does it mean to be a Parksinon’s disease care partner?

Being a care partner for someone with Parkinson’s disease (PD) is a whirlwind of challenges, responsibilities, setbacks and victories. It is a very difficult, but potentially very rewarding role. Knowing that many of you reading this are trying to navigate the complexities of being a care partner, we thought it would be helpful to  hear from others in your situation. If you haven’t already, you might find that reading our Becoming a Care Partner overview will be helpful as well.
For today’s blog, I spoke with three care partners to bring their unique perspectives to our readers who might be grappling with similar issues. Remember, every person with PD is different, their disease progression is different, and each care partner is different – so keep that in mind as you read on. But despite those differences, we think you will find helpful advice, bits of inspiration, and some solace in their stories. All names have been changed for privacy.
 
Q: What is the most gratifying part(s) of being a care partner for someone with Parkinson’s disease?
Ellen: We have developed a deeper connection and bond. I have also grown personally by taking an active role volunteering with APDA.
Gary: We live with Parkinson’s disease together. We are continually adjusting to this new norm. One priority is a daily exercise routine.
Brenda: I find that the most gratifying part of being a care partner is the intimacy that occurs in providing necessary care for someone you love.
 
Q: What is the most challenging part(s) of being a care partner?
Ellen: Staying patient and positive. It is difficult to know when to push him and when to back off.  I want to continue to challenge him, but it is sometimes difficult to know what he is capable of.
Gary: Anticipating my wife’s needs to keep her safe on a 24/7 basis…I can never let down my guard.
Brenda:  I would say there are three things that I find the most challenging: 1) Being responsible for EVERYTHING. I still have all my responsibilities from before PD and now I also have to do EVERYTHING my spouse once did. 2) Knowing that I cannot cure or stop my spouse’s disease and I can’t take away his pain. 3) The loneliness of my spouse’s unavailability to share and discuss issues – especially as the dementia increases.
 
Q: Do you get help from family, friends, neighbors?
Ellen: My husband is pretty self-sufficient, so I do not feel the need to ask for help at this point.  He is ambulatory but struggles with balance. Fortunately, he does not fall. He has had some mild cognitive decline and I worry most about that.
Gary: Yes, they are always available in any circumstance.
Brenda: Yes – we are blessed with WONDERFUL FRIENDS and some family members. They check in and do what they can.
 
Q: What keeps you going in the tough/challenging moments?
Ellen: Remembering to take a breath and physically give myself some space. I try to find some humor in moments. And