Just as many people can help your person with Parkinson’s live well, there are many whom you can add to your care team as you navigate your role as a care partner. Who plays a role in supporting you may change over time, and you may not need the same care team that another care partner does. As you think about who would make a vital part of your team, here are some people to consider:
Financial, legal, and long-term care advisors
The unknowns of any chronic medical condition bring financial, legal, and long-term care questions. Having a trained professional advise you in proactive strategies can reduce confusion and enhance peace of mind.
Donald L. Haisman, a certified financial planner (CFP) who is living with Parkinson’s, says a team of “financial care partners” can assist you and your person with Parkinson’s, which could include the following professionals (specific US- based designations in parentheses):
- Accountant (ideally a Certified Public Accountant, CPA)
- Attorney who specializes in estate planning
- Financial planner (ideally a Certified Financial Planner-Professional, CFP)
- Investment advisor (many times, this is also the CFP)
- Insurance agent (ideally a Certified Life Underwriter, CLU)
Haisman advises you to “share your honest concerns with those professionals on your team; they likely have years of experience assisting families in your situation.” He also says that someone on your financial team needs to be the coordinator of all these professionals. “This is very important because these disciplines overlap and contribute to your estate plan. Of the professionals I have suggested, the CFP is most likely to have the overall training, experience, and background to be your coordinator. Often, if you start with a CFP, they can refer you to others, if necessary.”
In addition to financial experts, professionals who specialize in medical and long-term health planning can be valuable members of your care team. At times, especially as your loved one’s Parkinson’s progresses, you may need to make medical and/or financial decisions on their behalf. Planning ahead for these situations and having in place a living will, power of attorney, and other advance directives is essential. An attorney who specializes in this area can help you design these important documents, as can many nonprofits and organizations who help with aging and end-of-life planning. To learn more about your state’s advance directive forms and policies, click here.
For many care partners, adding an expert in long-term care and long-term care insurance to their team brings much peace of mind. Seek out someone who understands your state’s or country’s policies and regulations around homecare, home healthcare, long-term care facilities, insurance and expenses, and other important aspects of long-term care. There is a profession called “Aging Life Care Professional,” which is kind of like a general contractor for senior citizen medical care. The right Care Professional can save you hours of work and many dollars by referring you to trustworthy and quality care providers. The Aging Lifecare Association is a national group of professionals with a website that can help you begin the search for a local resource.
Social Worker, Counselor, Therapist, Psychologist, or Psychiatrist
Just as these professionals can help your person with Parkinson’s process and manage emotions and mental health challenges, they can also benefit you. If you need guidance in any aspect of mental health, seek out one or more of these professionals for expert advice and suggestions on coping, resilience, grounding, and much more.
Many Parkinson’s care partners turn to these advisors for support, guidance, and hope, sometimes within the construct of traditional religions and sometimes through other forms of spiritual expression.
Care partner support group
People we’ve spoken to who are part of care partner support groups often comment on how important building their community has been. These groups receive emotional support, learn practical advice, and have a safe space to talk about care partner challenges. When you connect with others and bond through shared experiences, you open yourself to greater happiness, growth, and development. Support group members often collaborate on projects, mentor people working in similar fields, become Parkinson’s advocates, and build the courage, strength, and resiliency they need to help their people with Parkinson’s live well each day.
Respite care worker
While it might not be in your budget to hire full-time care for your person with Parkinson’s, hiring an aide or a respite worker for even an hour a day can make a huge difference in your life. If you’re working full time, you might investigate hiring a respite care worker to check in on your person during the day while you’re away. If you’re not working outside the home, having a respite care worker stop by for even short periods can give you time to devote entirely to yourself—to relax, recharge, exercise, or engage in one of your hobbies. If there’s an aspect of caregiving that is especially challenging for you, whether physically or emotionally, hire someone to take it over or ask a good friend or family member to help you out. You don’t have to do everything on your own.
Now, more than ever, you need trusted friends to turn to for support, love, and fun. The need for these relationships seems obvious; however, when you’re helping your person live well with Parkinson’s, sometimes tracking medications, going to appointments, exercising, preparing healthy food, and taking care of family take up nearly every minute of your day. Many care partners we’ve talked to said fun often stays at the bottom of the list. Don’t forget to stay connected to your friends and build time into each week to decompress, laugh, and simply have fun with them. Those same care partners said how much their lives improved when they built time for fun, play, and friendships into their day.
Take care of yourself first. This is often a challenge when your person with Parkinson’s is constantly on the top of your mind and needs a great deal of care; however, you cannot give something you don’t have. To love and care for them, you must love and care for yourself. To ease their discomfort and pain, you must be able to ease yours as well. Self-care is not indulgent or selfish. Instead, it is your ticket to living well. And when you live well, you’re much better equipped to help them do the same.
You and your person with Parkinson’s need a support system as you navigate this shared journey. Don’t wait to reach out and start adopting a holistic approach. Seek out providers who listen, respect your input, and with whom you feel comfortable. A strong care team—not only for your person with Parkinson’s but for yourself as well—is key to living well as a Parkinson’s care partner, today and for many years to come.
This post was written by the Davis Phinney Foundation.
This post was sponsored by Kyowa Kirin.