Caring for the CareGiver, April 29 Webinar

Planning Ahead with Parkinson’s: A Practical Tool for Care Partner

Virgil Stucker 

On April 29, I offered the care partner’s perspective in the “Caring for the Caregiver” monthly webinar offered through the Massachusetts Executive Office of Aging and Independence.  Here is a link to a recording, which you may find useful.

Here is my script: 

Good afternoon. It is an honor to participate in this webinar with Liz, Cathi, and Anne. I’m Virgil Stucker, volunteer coordinator of the western Massachusetts “Berkshire Parkinson’s Support Group.” More importantly, I am the care partner for my soulmate, Lis, who was diagnosed with Parkinson's Disease 12 years ago. 

Like many of you listening, I know that Parkinson’s is not just a diagnosis for my wife; it has become a central part of my daily life as well. It affects everything. It dictates our morning routines, it drains our energy, it plays with our emotions, it shifts the traditional roles in our marriage, and it alters our plans for the future. 

At 73 and 74 years of age, we had planned to be elder Peace Corps type volunteers; instead, we are at home, and our four children and nine grandchildren are the ones living in the wider world in 6 countries. Thank goodness for Zoom! 

Consider the Dilemma of the Care Partner

Unlike being the care partner for a spouse with a shorter-term or more predictable disease, the Parkinson’s care partner is on a marathon journey, with decades of dealing with symptoms that progressively worsen, but often in completely unpredictable stages.

As care partners, we live with a constant, heavy tension. On the one hand, we pour our energy into the present—we do our best to help our partner have a good day today, and perhaps tomorrow. 

On the other hand, we try to look beyond to our uncertain future. But if we are honest with ourselves, we are too frequently slow in developing longer-term plans. This is understandable. Long-term planning is emotionally taxing, and we may already be feeling overwhelmed by our day-to-day caregiving responsibilities. 

However, we must recognize that our lack of preparation can set us up for crises that could have been completely avoided had we planned better.

Fortunately, Lis and I feel less overwhelmed today because we have developed long-term plans, have an excellent medical team, and share our lives with our 100+ member Berkshire Parkinson’s Support Group. 

Recently, as a group, we decided to tackle a vital question: How can we make longer-term planning easier for families like ours?

We created a Long-Term Planning and Resource Guide for our region in western Massachusetts. Today, we are unveiling our website, which incorporates this Guide as a set of practical tools. While it is tailored to our region, most of it will be useful to anyone dealing with Parkinson’s across the Commonwealth.

(Start Screen Share)

The website is BerkshireParkinsonsSupport.org. I will give you a tour.

(Screen Share: Navigate to Home page)

On the home page, you will see the tools listed at the top. 

(Screen Share: Navigate to “Essential Hospital Planning” page)

During hospital stays, hospital staff often do not comply with the strict, time-sensitive medication regimen required for Parkinson’s patients. This is a national problem. Symptoms can spiral as a result, extending lengths of stay, adding avoidable rehab, and sometimes causing irreversible harm. 

We are proud to say that we successfully negotiated with Berkshire Health Systems Hospital leadership to agree to specific protocols that assure medication compliance for our hospitalized loved ones. Showing this page to hospital staff during the admission process is a helpful reminder.

We encourage other support groups to negotiate similar protocols with their hospitals. 

(Screen Share: Navigate to “Resource Directory” page)

We also compiled a list of regional resources across many categories. Just click on the “+” button to open a category. For example, here are accessible neurologists with movement disorder expertise (essential for someone with Parkinson’s). We have none in Berkshire County, so our list reaches to options as far east as Boston and Worcester, Hartford to the south and Albany to the west. 

With this directory, our hope is that when a new problem arises, a care partner doesn't have to start from scratch, frantically doing a Google search in a moment of panic. This directory is meant to be a trusted list in one place, saving time, reducing stress, and helping families act sooner. It will, of course, need periodic updating.

(Screen Share: Navigate to “Planning Worksheets" section)

Here you will find interactive planning worksheets to help care partners and people with Parkinson’s think ahead across several important areas of life. These include guided planning questions in a checklist format which help to trigger short and long-term planning. You don’t need to take it all on at once; move in incremental steps. Completing each one will help you to avoid crises. 

Let’s ‘page’ through Step Three to give you an overview. You will see 8 planning categories to consider………. 

Some Care Partners listening have also wondered about when to seek additional in-home support. Here is a separate button with a checklist to help you with that.

Step One helps the care partner and the person with Parkinson’s to review their values. 

The first two ‘buttons’ give you the Worksheets in a downloadable form you can fill in. 

(End Screen Share)

By using some of these tools on BerkshireParkinsonsSupport.org, we hope that you will be better able to answer three critical questions:

What do I need now?

What might I need next?

And what can I put in place before we are in a crisis?

That kind of planning makes a real, tangible difference. It replaces paralyzing uncertainty with readiness. 

And for care partners, readiness matters. It helps us feel less reactive and more grounded. It allows us to have difficult conversations earlier, when there is more time, less pressure, and more choice. 

Planning ahead is an act of profound care.  We cannot plan for everything this disease will throw at us. But we can plan for the next step. And sometimes, taking that one step is enough to turn fear into action.