Parkinson's Disease, Support Groups

SHIP OF THE BRAVE

The reportorial question I often ask when I am seeking to draw a person out is this: Why are you attending this event? Why are you here?

The question usually produces useful insights and understanding about motives and state of mind, not to mention a good quote or two.

I used it with caregivers for Parkinson’s patients who gathered for a weeklong cruise in the Caribbean this month. It was a monumentally naïve, even stupid, question in this context.

Their reason for carving out the time and money was, as one eloquently put it, “so we could be normal people on normal holiday enjoying one another and not objects of curiosity.” No cooking, cleaning or errands for a blessed week.

The cruise was the ninth sponsored by the Parkinson Research Foundation of Sarasota, which operates the renowned Parkinson Place. The 37couples came from states ranging from California to Texas to Ohio to Vermont to Florida. Most were Parkinson cruise veterans. They received two days of the highest possible level of educational seminars from acclaimed neurologists Juan Sanchez-Ramos and David Riley.

Great doctors aside, it’s the caregivers, most of them women, that I want to discuss. They are extraordinary people. They stand tall and brave in the face of their partner’s advancing disabilities.

They manage the aftermath of falls; manage spouses who wander and become lost; manage partners whose voices have become so soft it is difficult to understand what they are saying; manage spouses who had regressed cognitively to the level of a three-year-old; manage partners so immobile they require almost full-time attention.

Observing those brave caregivers was a heartbreaking privilege. They were cheerful, upbeat and admirably social. The tears came quietly when they described how good their lives once were and how much their partner was now suffering the ravages of a relentless, unpredictable and incurable malady.

I will never forget the couple from California. She is a retired healthcare professional who has directed her still robust energies towards making the care of people with Parkinson’s better.

Her husband has had Parkinson’s for 25 years, but you would never know it. He remains the bear of a man who once played football and still visits the gym for as many workouts as possible.

He said our cruise would be his last. His energies had declined so much he could no longer participate in the manner he preferred. His wife’s eyes glistened as he spread that final goodbye to his fellow cruisers.

At the opposite experience pole was the Florida couple with a very recent diagnosis of Lewy body disease, the fiercest kind of Parkinsonism. The man had already lost his ability to drive. He was experiencing hallucinations. His wife was struggling to understand what had happened to her husband and what resources she needed to find immediately to deal with the rapidly escalating symptoms.

The best I could do was point her to Parkinson Place for support and care and give her the remarkably informative booklet from the Parkinson’s Disease Foundation: Parkinson’s Disease Q&A, Seventh Edition, a must read for the newly diagnosed.

The Parkinson Research Foundation’s Parkinson Place Director Marilyn Tait, was relentless in pounding home this essential message: caregivers’ No.1 job is to take care of themselves. Unless they did, they would lack the stamina and clear headedness to care properly for their loved one.

In a posting by Marty Beilin from the Well Spouse Association, Maggie Strong offers a similar message. She describes three progressive stages that typify a caregiver’s life.
The Heroic Stage

“The diagnosis is in, and a productive panic energizes you and family members. You want to learn as much as you can about your spouse’s illness or disability. Doctors and other experts are consulted. You read everything you can on the subject…
Optimism often abounds during the heroic stage….

“But over time when there is little improvement or decline sets in, hope slowly fades and optimism turns to despair… The heroic stage comes to an end as you come to terms with the reality of your spouse’s condition and prognosis.

Ambivalence

“Long-term caregiving sets up debilitating internal conflicts. On the one hand, you want to support and care for your partner. It’s the right and moral thing to do. You are motivated by love, or a sense of duty, or societal expectations. At the same time you feel physically exhausted. Financial concerns mount. You may have to quit your job. Intimacy is difficult or impossible. You don’t see a future. You want to get out…

The New Normal

“In this third stage, balance, resolution, and inspiration empower caregivers to live much more fulfilling lives. You recognize and come to terms with the long-term nature of your situation. But you no longer put off or set aside your desire to pursue your own interests and dreams…

“To achieve balance, you communicate more openly with your spouse and take steps needed to resolve the often difficult and painful issues in the marital relationship…

“The new normal is achieved when we no longer go about our caregiving responsibilities with resentment but attend to the needs of our partner with love.”

For more information about Parkinson Place in Sarasota, FL or to learn more about Parkinson Research Foundation’s Educational Cruise 2017 please visit ParkinsonPlace.org or call 941-893-4188.

Addendum

1. The Well Spouse Association is a community of spousal caregivers for the chronically ill and/or disabled. It offers support groups, an online chat room and forum, and mentors. It sponsors bi-monthly weekend respite events. It also shares best practices on how to carve out time for caregivers daily or weekly. Contact information for the dues-paying organization is 1-800-838-0879, http://www.wellspouse.org and info@wellspouse.org.

2. 2017 PRF Educational Cruise
March 17-26 sailing from Port of Miami to Southern Caribbean on Royal Caribbean’s Navigator of the Seas. Stops in Haiti, Curacao, Aruba and Bonaire.

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