Being the carepartner for a Person with Parkinson’s requires tenacity, grace, and support. But you don’t have to do it alone. There are many resources available for carepartners, including support groups and online resources.
Recent Caregiver’s Corner Blog Posts
Darlene’s Parkinson’s disease initially manifested itself with a quiver in her lip and progressed over 25 years to symptoms serious enough to warrant entry into a hospice program. As her caregiver, I have witnessed a decline characterized by relatively sudden (typically within months) onset of new symptoms followed by relatively long (typically years) “plateaus” of stability.
February can be a gray and dreary month in Ohio with the holiday rush behind us and Spring still several weeks away. Valentine's Day offers an opportunity to celebrate and recognize loved ones. Many special people can be acknowledged with a valentine wish— from a parent, to a friend, to a co-worker, to a physical therapist. Traditionally we think of romantic relationships as the true celebrants on Valentine's Day. So I have been pondering romantic and intimate relationships when navigating life with PD.
In thinking about a blog post this month I cannot help but think of Thanksgiving. It is so easy to think about the negatives of a Parkinson’s diagnosis for the person with PD and for their surrounding circle of family and friends. I want to stop and consider is there anything about a PD diagnosis that perhaps one can be thankful for or appreciate?
Holidays can be full of joy and excitement, but also tricky to navigate if you have any sort of chronic illness. The keys to enjoying the holidays can be sorted into a few important categories: maintain routines, be alert to safety issues, ask for and accept the help you need, and keep it simple.
Dr. Johnna Devoto helps caregivers and PWPs find strategies for maintaining quality of life and live well with Parkinson’s disease. In this talk from our PD Edu series, Dr. Devoto helps caregivers create a plan for moving forward based on cognitive changes and mood disorders that may come into play down the road as you navigate a life with PD.
Julia Burks sits down to chat with caregiver support group leader Janet Schmidt about her experience as the carepartner of a Person with Parkinson’s.
In this busy life having a list can be a lifesaver. Jot down a list of what needs to be done each day from picking up medications, to trimming toenails, to filling the car with gas.
I get lots of questions on how to deal with dementia. I could give you a list of resources to look up on the internet, workshops to attend, books to buy.
When I began my “career” in caregiving in the 70s, I don’t remember seeing much literature about the subject, especially since I didn’t use the internet. Learning about resources amounted to the Yellow Pages and phone calls.
Darlene’s Parkinson’s disease initially manifested itself with a quiver in her lip and progressed over 25 years to symptoms serious enough to warrant entry into a hospice program. As her caregiver, I have witnessed a decline characterized by relatively sudden (typically within months) onset of new symptoms followed by relatively long (typically years) “plateaus” of stability.
No one fully understands what your caregiving situation is like for you. No one. Not even other Parkinson’s caregivers; and ironically but maybe especially, not even the person you are caring for. Just as no two Parkinson’s “cases” are alike, no two caregivers, caregiving relationships, or caregiving situations are alike.
One of the most common questions from family members of people diagnosed with Parkinson’s disease pertains to when and how to get help at home for caregiving support of a loved one. Often people diagnosed with Parkinson’s disease and their loved ones struggle with knowing when to add support at home for everyone, and there are many complex and unique concerns for each family regarding their support system and life at home. There is not a “one size fits all” model for support at home, but there are some general benefits to adding support sooner than later. If you or your loved one are starting to wonder when to add support, it may be time to begin to plan to add support.
No one fully understands what your caregiving situation is like for you. No one. Not even other Parkinson’s caregivers; and ironically but maybe especially, not even the person you are caring for. Just as no two Parkinson’s “cases” are alike, no two caregivers, caregiving relationships, or caregiving situations are alike.
Eighteen years ago, when my husband was first diagnosed with Parkinson’s Disease, he forbade me to tell anyone for two years. He argued that it was his disease and therefore his story to tell at the time of his choosing. The fact that Parkinson’s Disease had happened to him was clear, but it had happened to me, too. It had happened to us.
Carepartner Support groups
Frankfort, Ky
3rd Thursday of every month, 6:00 -7:30pm
First Christian Church
316 Ann St
Frankfort, Ky
Dillsboro, Ind
2nd Tuesday of every month
The Waters of Dillsboro-Ross Manor
12803 Lenover St
Dillsboro, Ind 47018
Thursdays 10-11:30am
Meets virtually from October 31st through December 19th, 2024.
Space is limited, registration required
Care Notebooks
The life of a caregiver is very full and I am always searching for ways to help make it easier and more efficient. One way to do this is to create a “Care Notebook.” It is a “one-stop resource” for physician appointments, caregiver information, and something tangible to grab if you are heading to the emergency room or hospital for a procedure. It could include information such as: medication history (past and present), recent tests performed, allergies, family contact information, physician business cards, insurance cards, living will, questions for physician visits, calendar for appointments, etc., etc. It can be as stream-lined as you desire or as full as you wish. It would serve as a central place to organize all of your health care information and would make it easier to share the information with your health care team.
Maureen Gartner, NPC
CaregiverHelp.com
Elaine Sanchez is one of the co-founders of CaregiverHelp.com. This website is a video-based caregiver support program. Elaine started this journey from her own experiences with caring for family elders. She has "a passion for helping others cope with the emotional stress of caring for family elders." Elaine has developed many online continuing education courses together with her husband, Dr. Alex Sanchez. Also she has been approved by Washington State DSHS to deliver training to long-term care workers in the State of Washington. Elaine has on numerous occasions been a keynote speaker on the subject of healthcare and caregiving across the US. She is also the author of "Letters from Madelyn, Chronicles of Caregiver".