Tough Talks: Building a Support Team
Building a Support Team by Fern Pessin
Caregiving can feel overwhelming, especially when it seems like your loved ones (carees) don’t see the necessity of fulfilling your recommendations to keep them safe and healthy. Another major stressor is feeling that you’re all alone, with everything falling on your shoulders. Having a team to provide feedback, time, financial support, advice, and share responsibilities can significantly ease caregiver stress.
Effective communication is critical to building a collaborative team that addresses what’s needed rather than only what each person prefers to focus on. Regular communication in a format that suits each individual—written, spoken, video, in-person meetings, or text messages—helps build trust. With trust, everyone can get on the same page, which leads to mutual agreement on decisions. This results in plans being executed and routines upheld by multiple people rather than just one person.
Roles
Each care team member can contribute more effectively when they are aware of their role and responsibilities. Sharing regular updates will create a cohesive environment where everyone feels valued and motivated to provide their best support. When others are in the know, you can actually take time for yourself and go on vacation now and then!
Who is the primary care provider? Who handles the hands-on duties day to day? The primary care provider typically coordinates the care team. Weekly reports to the rest of the team keep everyone informed about completed tasks, upcoming steps, and any necessary adjustments. This practice ensures that no responsibilities fall through the cracks, and everyone knows what is expected of them. Regular updates also allow anyone on the team to step in, make decisions, and act if something comes up and the primary care provider is unavailable.
Who are the secondary or long-distance providers? These care team members might be business owners or have very time-consuming jobs. They might live out of town. Perhaps they have physical challenges. Maybe they have young children or a spouse who needs caregiving at home. These secondary care team members could manage things that don’t require physical presence. Such as researching and ordering supplies online, managing finances, taxes, and/or legal issues, phone screening potential aides, researching communities that provide more support, handling tech issues, etc. They may not have flexible schedules, so secondary providers may only be available for in-person care participation over weekends or short trips to provide respite for the primary care provider.
The Teams You’ll Want
Ideally, you’ll want to create two teams. The first team handles the primary care of your loved one(s). The second team, which might overlap with some members from the first, focuses on specialized expertise.
Get Organized
Your care teams will provide valuable information, advice, time, and resources whenever challenges arise, ensuring you are never alone in your caregiving journey. By organizing contact information for each person, cataloging what they can offer, and defining what you need in a spreadsheet, project management software, or your contact app, you’ll find the path to more manageable and effective caregiving unfolding before you.
Start Early
Simply put – early planning is better. Establishing your caregiving role and gathering care teams before your loved one faces comprehension, cognitive, or physical challenges is optimal. The goal is to create a safe environment that ensures the health and well-being of your loved one, right? So, if your loved one hasn’t told you and can suddenly no longer communicate what they prefer, you’re left guessing. Each person on your team who wants to help will only be able to imagine a solution rather than know the true wishes of the caree.
Primary Care Team
Begin creating your team by identifying what you can personally contribute. Is it time and direct daily or weekly care, money, legal or financial advice, medical support, real estate, transportation, technology, research, or something else? Let’s see who else can fill the gaps to ensure your caree has full coverage. The key here is that you don’t have to do everything yourself! You might think you want to. And, TBH, at times, it would be easier. But, down the road, you will resent being unable to live your own life because you are the “only one.”
Next, consider others who your loved one might already have in place. What can/do they contribute?
Who might wish to join the Care Team? What can they contribute? [See the lists below itemizing various forms of assistance your caree might find beneficial.]
Who else might you invite to supplement/share efforts or provide additional benefits? Family, neighbors, friends, and volunteers at various organizations can fill in the blanks when delivering parts of the care plan of action. [See lists below.]
Specialist Team
Knowing who to call and what each offers can remove the burden of doing it all yourself. Having a list of the resources your loved one currently uses and adding resources that might be needed can save the day when urgency presents.
Don’t be afraid to ask for and accept help from others. For day-to-day needs, consider whom you can rely on to support your loved one with tasks such as companionship, pet care, home care, yard upkeep, making calls, running errands, providing outings, paying bills, driving, cooking, home repairs, and more.
Look at a typical day and list everything that needs to be done. Add in weekly and monthly responsibilities and deadlines. Ask family, neighbors, your house of worship, and volunteer groups for assistance.
Consider collecting the following resources:
Primary Experts Team
- Doctors (for each specialty)
- Lawyers (Elder Law, Estate Law, Business, Real Estate)
- Financial Advisor
- Tax Consultant/Accountant
- Money Manager
- Nurses and Aides (Agency or Private)
- Notary
- Banking Rep
- Tech guy (IT issues)
Household Management Team
- Plumber
- Electrician
- Handyman
- Housekeeper
- Errand Runner
- Food Delivery or Chef
- Pets & Plant Management/Landscaping
- Driver/Transportation
Health Related
- Driver/Van
- Rx Delivery
- Medical Supplies
- Medical Rentals
- Aide(s)/Nurse
- Companion
Preferred Providers
- Hospital
- Medical Office
- Imaging Center
- Laboratory
- Pharmacy/Pharmacies of choice
- Dentist
- Geriatric Psychiatrist/Psychologist/Counselor
- Physical Therapist
- Personal Trainer
- Support Program (grief, caregiving, illness specific)
There might be a nearby Meals on Wheels group to deliver hot meals and provide a visitor for conversation. Maybe a high school intern or church member can provide companionship while you’re at work. Perhaps someone tech-savvy can set up autopay for bills and invoices.
Empower others by giving them specific tasks so they feel they’ve contributed significantly and know they’ve done what was needed. This can alleviate your burden and ensure your loved one is well cared for. It frees time to fulfill your work obligations, as well as time to have family and friends’ social experiences.
Remember, accepting help strengthens the support network around your loved one.
Sharing Status and Health Updates
Care partners should regularly be updated on the health status and any personal caregiving wishes of the caree. This can be done through a simple group email.
Each carer can leave chronological notes in a binder or notebook at the caree’s home to maintain a progress and health notes log.
Trying to keep all the well-meaning neighbors, friends, and family up to date on your loved one’s condition (especially when they’re in a hospital or have a critical illness) can monopolize your day and make you feel like you’re repeating the same thing again and again. To reach a wider audience, a web-based program (like caringbridge.org) enables people to read updates, leave caring messages, make donations, and find out how to help with errands, deliveries, or visiting hours. (Note: Someone on the care team needs to input updates to the site regularly, or it may not be helpful to anyone.)
By getting organized and assembling a dedicated Care Team, you are laying the foundation for managing your caregiving responsibilities with ease. This will allow you to protect your well-being and lead a fulfilling life.
Additional Resources:
Try downloading a question-and-answer booklet that will guide you through the info and data to collect and questions to ask at the non-profit, www.fivewishes.org.
I’ll Be Right There: A Guidebook for Adults Caring for their Aging Parents includes worksheets, checklists, and guidance for various situations. This book is available through Forty W Advisors or on Amazon in Kindle or print versions at https://bit.ly/PessinBooks.