A Caregiver’s Role in the ‘TBM’ Support Partnership

As this chronic illness progression continues to steal away functioning, I need more support. When I previously wrote about the excellent role Mrs. Dr. C plays within the support partnership, a reader asked, “How do I get me a Mrs. Dr. C relationship?”

I didn’t reply at the time. After pondering it, I would say, “You have to build it.” The patient’s role in the partnership is not just about being sick, but about being well together.

For “TBM” – my three-tiered self-management strategy of threshold management, brain rewiring, and mindful movement – to be effective in reshaping the Parkinson’s brain, it needs to become a way of life. TBM needs to replace old patterns that contribute to the ugly days.

Spending more hours each day on TBM, rather than reverting to old habits, took me years. I’m still working on it. It wouldn’t have happened without the supportive partnership I have with Mrs. Dr. C.

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Parkinson’s isn’t easy for the patient or the caregiver in the support relationship.

Substantial life changes from Parkinson’s may result in caregiver burden. Caregiving affects a person’s emotional, financial, social, physical, and spiritual functions. The internal conflict that caregivers may experience when they are unable to fulfill their personal needs just makes it worse.

As the Parkinson’s patient, the best contribution I can make to the TBM support partnership is empathy for my partner. I need to step out of the “sick role” and walk in her shoes. I make a concerted effort to do this daily by checking in on her. I try to give her the time and resources to do activities she enjoys — those that add meaning to her life. She has her space to do her thing.

But we also share space.

Whatever accomplishments I receive notice of, she is part of that shared space. It’s not, “Look at what I did, dear.” It’s, “Look at what we did.”

Mrs. Dr. C is a working part of everything I create. It’s a mutually agreed-upon relationship with defined roles that we both fit and enjoy. That’s not to say there are no unpleasant tasks, but we agree to shovel together.

Currently, we’re both reading “The Wounded Storyteller” by Arthur W. Frank. It’s so engrossing that it takes several read-throughs to thoroughly digest everything the author covers, including the various roles people adopt when affected by chronic illness. Frank sees empathy as what a person “is with” another, a partnership in which each understands that the relationship requires completion by the other. The narrative we tell ourselves about the illness is shaped by the empathy we have for each other.

Skilled communication is paramount in building empathy. We use “I feel …,” “I need …,” and “Can you help with …?” We take the time to say “thank you” and “please,” and give praise for all accomplishments. We also use T.O.O.T.S. (“Time Out on the Spot”), because no matter how hard we try, facing suffering every day is a burden for both of us.

In an article published in the journal Rehabilitation Research and Practice, author Rozina Bhimani identified several gaps in the research on caregiver burden. Her study results indicated a need to identify practical interventions that decrease caregivers’ physical, psychological, and socioeconomic burdens. She found that an understanding of how caregivers negotiate day-to-day caregiving activities is missing. Gaps exist when it comes to information about how caregivers reconcile multiple medications and manage a patient’s rehabilitation needs at home. Bhimani recommended “a systematic evaluation of the caregivers’ capacity at the time of clinic visit.”

Mrs. Dr. C said that very few of my providers have even acknowledged her during clinic visits, let alone asked about the home situation of caregiving.

I love that Mrs. Dr. C and I are a team, despite Parkinson’s. The ugly days interfere. I can’t generate empathy or share space as a team member because all of my experiences in those moments are Parkinson’s-focused. There’s no room for anything else. But thanks to TBM, we both know that now.

Practicing TBM makes the ugly days more manageable, which improves the quality of the support partnership. And as the support partnership improves, so does my TBM practice — a symbiotic effect.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.