Has someone you care about recently been diagnosed with Parkinson’s disease?
Are you wondering how you - as a spouse, partner, or family member - can step into the caregiver role and what you should expect in the days, months, and years ahead?
What kinds of things should you consider, as a caregiver, to make sure you and your loved one are set up for success in the future?
Are you worried about how this new dynamic will affect your relationship?
Today we’re talking about how to lay the groundwork early after a Parkinson’s diagnosis to ensure you, as a caregiver, and your loved one can move forward together in an effective and powerful way.
Something important to remember: No two Parkinson’s journeys are the same.
No one has a crystal ball, and it’s impossible to predict exactly what your future will hold for your loved one or for you as a caregiver.
The goal of this post is to empower you with some powerful tools, resources, and strategies that you can implement in order to reduce the worry, anxiety, and stress that can come with a new Parkinson’s diagnosis.
What we’ll cover:
What does it mean to be a Parkinson’s Caregiver? (Roles & Responsibilities)
7 things you’ll need as a Parkinson’s Caregiver
How to learn about Parkinson’s (without getting ahead of the disease)
Ways to establish positive communication patterns before symptoms progress
Young Onset Parkinson’s Disease - Special considerations
Our guest today is Anne Wallis, the Associate Director of Education at the Parkinson’s Foundation.
As part of Anne’s role in the Education department, her focus is providing quality informational resources and programs for people with Parkinson’s disease, their caregivers and loved ones, and the professionals who are part of the medical and care team.
Prefer to watch instead of read?
We have you covered. Please scroll down to the end of this post to watch the full video interview with Anne.
What does it mean to be a Parkinson’s Caregiver?
There's obviously a huge difference between the caregiver who has a person with Parkinson's who was diagnosed yesterday, and the person with Parkinson's who was diagnosed 30 or 40 years ago.
Parkinson's looks so different from person to person, especially from the beginning to later on in the disease, so the caregiver of a person with Parkinson's really doesn't look like one thing.
In a perfect world, a Parkinson’s caregiver is the person who is:
Giving care to their loved one with Parkinson's,
Flexibile and ready to handle the disease as it comes (because it's not going to come the same way that you've seen it with other people with Parkinson's),
Able to fluidly adjust as things change and face whatever challenge arises with an open mind, and
Makes sure they're also taking care of themselves as the disease progresses.
7 Things You’ll Need as a Parkinson’s Caregiver*
1. Learn about Parkinson’s (without getting ahead of the disease)
It’s really easy for people to get information about Parkinson’s and then get upset, because they think they know what is going to happen. That’s not the reality of this disease. You need to balance your need to learn about Parkinson’s with the human instinct to expect the worst, so you don’t end up freaking out.
2. Time management
It is important in the early stages to lay the groundwork for what you may need as the disease progresses, so practice delegating to your loved ones with tasks that come up around caregiving. That means making sure you’re establishing routines that work for your family and that you are staying flexible so that Parkinson’s doesn’t become who you are. Be really intentional about creating that system for your days, weeks, and months that works with how your loved one’s Parkinson’s is progressing.
3. Self-care, health and respite
As a social worker, this is my favorite topic to discuss. Self-care is so important with caregiving, and that means talking about your health and respite. Make sure you are getting all the preventative health care you need, because if you get sick you can’t care for your loved one. You’re aging alongside them.
When you need a break, take it, but don’t wait until you need one. Practice taking breaks before you need them. Plan trips with friends and protect that time, and look for your signs of stress so you can find what works for you to beat it and to build care breaks into your schedule.
4. A support team
Who in your life can play roles in your caregiving team from early on through the advanced stages? Try to bring them on board early. There’s always someone who can help if we pause to identify them.
5. Your relationship with the person with Parkinson’s
There is no such thing as a perfect relationship, and no one is going into this new phase of managing Parkinson’s with a perfect relationship where communication is easy and you’re always on the same page.
Those imperfect parts of your relationship don’t go away even though you are now united by fighting Parkinson’s. Be intentional about establishing positive relationship patterns before the disease progresses.
Ways to establish positive communication patterns before symptoms progress:
look for apps and other tech tools to handle time management tasks, especially if you have children or busy schedules
use a Caregiving Notebook to track your needs so you can communicate with your loved one and medical team
seek out a counselor to work through all your fears about your relationship that existed before and after diagnosis to set up a good foundation and learn coping tools
set up a regular touch point with your loved one to create a protected time where you can vent issues to each other in a safe way to prevent buildup and explosions of frustration
6. Medical, financial and care decisions
It is true for everyone, but especially if you are younger: You need to start thinking about changes you need to make for medical, financial, and care decisions. But don’t try to do it all at once, because you’ll overwhelm yourself!
Particularly if your loved one is on the younger side, you’ll want to begin with thinking about whether they will need disability benefits and how to get those when that time comes. Establishing a baseline is really important. You may not need a disability claim, but a medical baseline definitely helps explain your journey.
7. Community resources
The Parkinson’s Foundation offers a wealth of resources for caregivers on their website that are easy to navigate and incredibly comprehensive.
There’s a helpline (1-800-4PD-INFO) that can connect you to support groups, expert care, specialists, or answer any question you may have.
You can also see if there’s a Parkinson’s Foundation Center of Excellence near you. There are 45 locations, mostly in North America, and are a great resource if there’s one within driving distance. If not, there’s still probably a local support group near you.
You may be able to find those through your county or area’s agency on aging, which will have information on financial assistance as well as other local resources.
*To learn about the 7 needs in-depth, head over to the Parkinson’s Foundation website to download or order their book, Caring and Coping.
Young Onset Parkinson’s Disease (YOPD) - Special Considerations
This is not an easy hand you’ve been dealt. It can seem like an impossible feat to fit in everything you need to do for your loved one with Parkinson’s, and also work and/or parent full-time. There are so many other people in a similar boat, trying to figure it out as well. You are not alone, and remember that it’s okay to be scared and overwhelmed. Here are some things to consider.
Set small goals for yourself.
Don’t try to make every appointment or squeeze everything into one day. Pick one thing, do it, and bask in the glory of having done it. Celebrate the tiny victories.
Prioritize talking about the big stuff
Make sure you are talking to your doctor about non-motor symptoms, like depression and anxiety, early since they have the most significant effect on your daily life. Cognitive behavioral therapy is great for everyone with a new diagnosis, but especially for those with anxiety and depression, and can be a great tool for those with so much activity and responsibility still on their plates.
Preparing to apply for disability
Get your loved one assessed by a physical therapist, a speech therapist, and a neuropsychiatrist ASAP so that you can track changes over the years and prove what you used to be able to do and why you can no longer do it. It’s not formal, but it helps establish benefit claims and creates a go-to medical team that becomes as much a part of your routine as seeing a dentist.
If you are young, you’ll want to think about whether or not in 10-15 years you’ll still be in the workforce and what it will mean to your financial situation if you have to apply for disability. You’ll also need to start thinking about estate planning.
The Parkinson’s Foundation Caregiver Summit
Every year, the Parkinson’s Foundation gathers caregivers in-person and online at their annual Caregiver Summit. If you can attend or tune-in online, you’ll learn a great deal about how to better balance life, and Parkinson’s, as a team.
Download Invigorate’s free Parkinson’s Caregiver Kit
We’ve gathered the most helpful tools, strategies, and resources for the Parkinson’s caregiver into one easy-to-digest and incredibly helpful eGuide. You’ll learn the tried-and-true go-to tips from experts, people with Parkinson’s, and CarePartners so you don’t have to reinvent the wheel.